Vision Loss, Access to Eye Care and Quality of Cataract Surgery in a Marginalised Population the Karachi Marine Fishing Communities Eye and General Health Survey

Home , Shams Pir

Vision loss, access to eye care and quality of cataract surgery in a marginalised population The Karachi Marine Fishing Communities Eye and General Health Survey

Sayyed Khabir Ahmad

A thesis in fulfilment of the requirements for the degree of Doctor of Philosophy

School of Social Sciences Faculty of Arts and Social Sciences

June 2015

THE UNIVERSITY OF NEW SOUTH WALES Thesis/Dissertation Sheet

Surname or Family name: Ahmad

First name: Khabir Sayyed Other name/s:

Abbreviation for degree as given in the University calendar: PhD

School: School of Social Sciences Faculty: Arts and Social Sciences

Title: Vision loss, access to eye care and quality of cataract surgery in a marginalised population: The Karachi Marine Fishing Communities Eye and General Health Survey Abstract Background Marine fishing communities are among the most marginalised and hard-to-reach groups; health research with these communities is time- consuming, expensive and unpredictable given that most male members are at sea for lengthy periods. Objectives and methods The Karachi Marine Fishing Communities Eye and General Health Survey was a cross-sectional study among fishing communities living on three islands and in four coastal areas in Karachi, on the coast of the Arabian Sea. The survey examined gender, ethnic and socioeconomic differences in the burden of vision loss, access to eye care services, user experiences, and outcomes of cataract surgery. Data were collected between March 2009 and April 2010: informants participated in a detailed interview regarding their sociodemographic characteristics, eye care use and experiences, were tested for presenting and best-corrected visual acuity with a reduced logMAR chart, and underwent detailed eye examination. Key findings Of 700 participants (49.4% males) aged ≥ 50 years planned to be included, 638 (91.1%) were interviewed and examined. Nearly all (93.9%, 95% confidence interval [CI], 91.7%–95.6%) lived in extreme poverty and 84.3% (81.3%-86.9%) had no school-based education. The age-standardised prevalence of mild vision impairment (VI; presenting visual acuity <6/12-6/18 in the better eye), moderate or severe VI (MSVI; <6/18-3/60) and blindness (<3/60) were 15.1 % (12.2%-17.9%), 23.2 % (19.8%-26.5%), and 2.8% (1.4%-4.2%), respectively. Women had markedly poorer vision. Cataract accounted for 62.5% of all blindness and 54.7% MSVI while uncorrected refractive errors accounted for 30.7% and 70.3% of MSVI and mild VI, respectively. Overall, 349 (54.7%; 95% CI 50.8%-58.6%) participants had never had an eye examination. Ethnic Bengalis were 4.2 times less likely (odds ratio 0.24, 95% CI 0.15–0.38; P<0.001) to have had an eye examination in the past than Kutchis. Bengalis compared with Kutchis and Sindhis, and individuals describing their household financial status as “poor/fragile” compared with “fine” were more likely to cite financial hardships as barriers to the uptake of eye care, while women were more likely to cite financial hardships, “fears” and social support constraints than men. Bengalis had markedly lower cataract surgical coverage than other ethnic groups. Acceptability of eye care services in this marginalized population, especially among women, was low. Of those who had used eye care services within the last 5 years (n=218), 43.1% (36.7%-49.76%) reported unwillingness to visit again their last visited care facility or to recommend this service to others. Women were two times more likely to voice such concerns compared with men, especially about financial inaccessibility, ineffectiveness of care and poor communications by staff. Women’s eyes were 4.38 times more likely to have suboptimal visual outcome (PVA<6/18) compared with men’s eyes (adjusted odds ratio 4.38, 95% CI 1.96-9.79; P<0.001) after adjusting for the effect of household financial status. However, women did not voice their dissatisfaction with the outcome as frequently as men. Implications Vision impairment and blindness are receiving attention globally but with insufficient focus on those most difficult to reach and having unequal access. This study provides the first detailed description of large unmet needs of a hard-to-reach, marginalised population in Karachi, despite the adverse security situation. These communities, especially women and ethnic Bengalis, require proactive attention in policy, service delivery, and research.

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ACKNOWLEDGEMENTS This work would not have been possible without the help and support of many individuals and organisations. First, most importantly, I would like to thank my supervisor, Professor Anthony Zwi, for fully supporting me through every stage of this extremely challenging research and academic journey. I am very grateful to him for his extraordinary contributions and kindness. Professor Daniel Tarantola was my co-supervisor until he left UNSW in early 2013. He provided me extraordinary support and guidance and I am very thankful to him. I would also like to thank my other teachers and mentors who have helped me reach this level of education and who have been the foundation for my work and intellectual enthusiasm. This work was funded through a scholarship grant to me from The Fred Hollows Foundation (FHF), Australia, and I would like to acknowledge this invaluable support. Special thanks to Ms. Rashin Choudhry, Dr. Rubina Gillani, Ms. Virginia Sarah, Mr. Brian Doolan, and Mr. Michael Johnson of the FHF, as well as all study participants who gave their valuable time. In particular, I thank our survey team members, Mr. Adeel Sarfaraz, Mr. Faraz Ahmed, Mr. Munawar Ali, Mr. Abid Butt, Ms. Amna Kutchi, Ms. Humaira Kutchi, Dr. Fawad Umer, Ms. Samana Zaidi, Ms. Heena Ali, Mr. Younus Kutchi, and Mr. Hanif Kutchi, for their contributions across different stages of the survey. I also thank Mr. Iqbal Adamjee, Mr. Ashraf Adamjee, and Dr. Jamshaid Khan of Adamjee Eye Hospital/Adamjee Foundation, Karachi, for their generous support for the treatment of participants and many others in these communities in whom eye disease was diagnosed, as well as Dr. Zahid Jadoon, Professor Saleh Memon, Mr. Sean Victor, Mr Bal Chand, Mr. Ebrahim Hasan Khan, and Mr. Raza Zaidi. I also take this opportunity to thank the Aga Khan University, Karachi for providing me with the space and support to complete this work, in particular the following: Dr. Azam Ali, Dr. Tanveer Chaudhry, Professor Asad Jamil Raja, Professor Jamsheer Talati, Professor Ather Enam, Professor Farhat Abbas, Professor Anwar Ali Siddiqui, Professor Mohammad Khurshid, and Mr. Iqbal Azam. My courageous and caring wife, Beenish Khabir, my lovely daughters, Yumna Khabir, Momina Khabir, and Fatima Khabir, and my other family members were adversely affected by this work and I thank them all very much. Both my parents became critically ill and died prematurely during this academic journey and I pray for their eternal peace. Finally, if I have missed any names, I apologise. v

List of publications arising from the thesis

1. Ahmad K, Zwi AB, Tarantola DJM, Azam SI. Eye Care Service Use and Its Determinants in Marginalized Communities in Pakistan: The Karachi Marine Fishing Communities Eye and General Health Survey. Ophthalmic Epidemiol; 0(0):1-10. DOI: 10.3109/09286586.2015.1012592 http://informahealthcare.com/doi/abs/10.3109/09286586.2015.1012592 2. Ahmad K, Zwi AB, Tarantola DJ, Chaudhry TA. Self-Perceived Barriers to Eye Care in a Hard-to-Reach Population: The Karachi Marine Fishing Communities Eye and General Health Survey. Invest Ophthalmol Vis Sci 2015;56(2):1023-32 DOI: 10.1167/iovs.14-16019 http://www.iovs.org/content/56/2/1023.abstract 3. Ahmad K, Zwi AB, Tarantola DJM, Soomro AQ, Baig R, Azam SI. Gendered Disparities in Quality of Cataract Surgery in a Marginalised Population in Pakistan: The Karachi Marine Fishing Communities Eye and General Health Survey. PLoS One 2015 DOI: 10.1371/journal.pone.0131774 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0131774

In all cases candidate contribution was >70% having taken account of proposal development and design, planning, implementation and analysis of findings, drafting of all materials for publication, submitting and responding to reviewer comments. Professor Anthony Zwi contributed something like 10% to those except for the implementation and initial analysis, and others contributed lesser proportions.

Table of Contents Table of Contents ...... vii List of Abbreviations ...... xi List of Figures ...... xii List of Tables ...... xiii Plain language description of the study ...... 1 1. The main research questions ...... 2 2. Scope and outline of this study ...... 2 Chapter 1 GLOBAL EYE HEALTH: DISEASE BURDEN AND RESPONSE ...... 4 1.1 Global eye health ...... 4 1.2 Cataract: The role of prevention ...... 5 1.3 Global burden of cataract-related blindness and vision impairment ...... 8 1.4 Key challenges in addressing global cataract blindness and vision impairment...... 10 1.4.1 Availability of cataract services ...... 10 1.4.2 Access to cataract services ...... 12 1.4.3 Quality of cataract services ...... 13 1.5 Summary points of Chapter 1 ...... 14 Chapter 2 PAKISTAN: HEALTH, HEALTH SYSTEMS AND EYE HEALTH ...... 15 2.1 Population, geography, and administrative divisions ...... 15 2.2 The development context ...... 16 2.3 Health status of the Pakistani population ...... 17 2.4 Health system in Pakistan ...... 19 2.4.1 Who is responsible for the provision of health care in Pakistan? ...... 22 2.4.2 Service delivery ...... 23 2.4.3 Health workforce ...... 25 2.5 Eye health status of Pakistani population ...... 27 2.6 Pakistan’s response to major eye health problems - A review of eye health system . 28 2.6.1 Eye health governance ...... 30 2.6.2 Eye care service delivery ...... 31 2.6.3 Eye health workforce ...... 32 2.7 Summary points of Chapter 2 ...... 33 Chapter 3 WHY STUDY THE EYE HEALTH OF FISHING POPULATIONS? ...... 35 3.1 The state of worldwide fishery resources ...... 35 vii

3.2 Fishing communities: poverty, vulnerability, and marginalisation...... 36 3.3 Eye health of fishing populations: Why has so little medical research been focused on it? ...... 39 3.4 Why it is particularly needed to look at vision loss in the fishing population? ...... 43 3.5 Summary points of Chapter 3 ...... 43 Chapter 4 TOWARDS A RIGHTS-BASED ANALYSIS OF EYE HEALTH ...... 45 4.1 Existing approaches to reduce cataract blindness ...... 45 4.2 What are human rights and how did they emerge? ...... 48 4.2.1 How did modern human rights emerge? ...... 48 4.2.2 What are human rights? ...... 51 4.3 The right to health...... 52 4.4 Eye health as an enabler of central human capabilities, and a human right ...... 56 4.4.1 Eye health and right to the highest attainable standard of health ...... 58 4.4.2 Eye health and other human rights ...... 66 4.5 Applying human rights to eye health ...... 71 4.5.1 Advocacy and bearing witness ...... 71 4.5.2 Application of legal framework ...... 72 4.5.3 Rights in delivery of care and programming ...... 73 4.6 The added value of human rights-based approaches for eye health ...... 74 4.6.1 Rights imply obligations and duties; focusing on needs does not ...... 74 4.6.2 Not only outcomes, but also processes ...... 75 4.6.3 Emphasis on disadvantaged individuals and neglected populations ...... 76 4.6.4 Takes a holistic view ...... 77 4.6.5 Conclusions...... 77 4.7 A conceptual framework to examine the problem of cataract blindness and vision impairment ...... 78 4.7.1 Disease burden ...... 81 4.7.2 Access to care ...... 81 4.7.3 Quality of care ...... 81 4.8 Summary points of Chapter 4 ...... 83 Chapter 5 METHODS ...... 85 5.1 Study design ...... 85 5.2 Setting ...... 86

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5.3 Study participants ...... 88 5.4 Study variables ...... 89 5.4.1 Outcome variables ...... 89 5.4.2 Socio-demographic variables ...... 92 5.5 Informed consent and ethics approval ...... 93 5.6 Training and data collection process ...... 94 5.7 Sample size ...... 96 5.8 Statistical methods...... 97 5.8.1 Self-reported eye problems ...... 97 5.8.2 The prevalence and causes of vision impairment blindness ...... 98 5.8.3 Eye care utilisation ...... 98 5.8.4 Self-perceived barriers to eye care ...... 99 5.8.5 User experiences and acceptability of eye care services ...... 99 5.8.6 Cataract surgical coverage ...... 100 5.8.7 Barriers to cataract surgical services ...... 100 5.8.8 Outcome of cataract surgery ...... 100 5.9 Summary points of Chapter 5 ...... 101 Chapter 6 RESULTS ...... 102 6.1 Characteristics of survey participants ...... 103 6.1.1 Response rate ...... 103 6.1.2 Age, sex and marital status ...... 104 6.1.3 Occupation ...... 104 6.1.4 Education level ...... 104 6.1.5 Household income ...... 105 6.1.6 Self-reported financial status of the household ...... 105 6.1.7 House ownership ...... 105 6.1.8 Household crowding ...... 106 6.2 Eye problems (self-reported), vision impairment and blindness ...... 111 6.2.1 Self-reported eye problems ...... 111 6.2.2 The prevalence of vision impairment and blindness ...... 112 6.2.3 Causes of vision impairment and blindness ...... 113 6.3 Access to eye care services and user experiences of eye care ...... 125 6.3.1 Eye care services that are available for the study population ...... 125

6.3.2 Eye care utilisation ...... 125 6.3.3 Barriers to access to eye care ...... 126 6.3.4 User experiences and acceptability of eye care services ...... 128 6.4 Cataract surgical coverage and barriers to cataract surgery ...... 151 6.5 Cataract surgery and its outcomes ...... 159 6.5.1 Prevalence of cataract surgery ...... 159 6.5.2 Outcome of cataract surgery ...... 160 6.6 Summary points of Chapter 6 ...... 173 Chapter 7 DISCUSSION OF KEY STUDY FINDINGS ...... 175 7.1 About the survey and the study population ...... 177 7.2 Burden and causes of vision impairment and blindness ...... 180 7.3 Access to eye care ...... 184 7.3.1 Eye care use ...... 184 7.3.2 Barriers to eye care ...... 189 7.3.3 User experiences and acceptability of eye care services ...... 191 7.4 Cataract surgical coverage and barriers to cataract surgery ...... 196 7.5 Outcomes of cataract surgery ...... 200 7.6 Summary points of Chapter 7 ...... 203 Chapter 8 EYE HEALTH IN FISHING COMMUNITIES IN PAKISTAN: THE RIGHT TO HEALTH (CONCLUSIONS AND RECOMMENDATIONS) ...... 205 8.1 The right to health: a particular preoccupation with the most vulnerable groups and disparities ...... 205 8.2 Lack of effective health care system to deal with vision loss in this population ...... 206 8.3 The double burden of vision loss among women ...... 207 8.4 Ethnicity: a key determinant of inequalities in access to eye care ...... 208 8.5 Disadvantages in eye health and the poor socioeconomic status ...... 209 8.6 Availability of eye care facilities does not always guarantee access to eye care services ...... 210 8.7 Poor access to health-related education and information: a major obstacle ...... 210 8.9 Vision impairment and blindness adversely affect other human rights ...... 212 8.10 The right to eye health and Pakistan’s obligation ...... 212 8.11 Summary points of Chapter 8 ...... 214 REFERENCES ...... 216

List of Abbreviations

Acronym Description BVA Best-corrected visual acuity CEDAW Convention on the Elimination of All Forms of Discrimination Against Women CI Confidence interval CRC Convention on the Rights of the Child CRPD Convention on the Rights of Persons with Disabilities CSC Cataract surgical coverage ECCE Extracapsular cataract extraction FAO Food and Agriculture Organization of the United Nations FLCF First-level care facility GEE Generalized estimating equation IABP International Agency for the Prevention of Blindness ICCE Intracapsular cataract extraction ICCPR International Covenant on Civil and Political Rights ICESCR International Covenant on Economic, Social and Cultural Rights LMICs Low and middle-income countries MDGs Millennium Development Goals MSICS Manual small-incision cataract surgery MSVI Moderate to severe vision impairment NCD Non-communicable disease OR Odds ratio PHC Primary health care PVA Presenting visual acuity RAAB Rapid assessment of avoidable blindness RACSS Rapid Assessment of Cataract Surgical Services UDHR Universal Declaration of Human Rights VA Visual acuity VI Vision impairment WHO World Health Organization

List of Figures Figure 1 Applying a rights-based approach to eye health in fishing communities in Karachi, Pakistan ...... 3 Figure 2 Global causes of blindness in 2010 ...... 9 Figure 3 Global causes of moderate or severe vision impairment in 2010 ...... 9 Figure 4 Flow diagram for selection of studies ...... 41 Figure 5 A proposed conceptual framework for analysing the burden of a given public health problem (e.g., cataract blindness) and the way in which health systems respond to it...... 79 Figure 6 Pathway of need assessment to outcome of interventions: A summary of findings of Pakistan National Blindness and Visual Impairment Survey 2001-2003, using a gender lens .... 80 Figure 7 Applying a rights-based approach to eye health in fishing communities in Karachi, Pakistan ...... 83 Figure 8 Schematic diagram of the design of the Karachi Marine Fishing Communities Eye and General Health Survey...... 86 Figure 9 A map of the selected localities inhabited by the fishing populations in Karachi, Pakistan ...... 87 Figure 10 Schematic diagram of the research plan ...... 89 Figure 11 Pathway of need assessment to outcome of interventions...... 103 Figure 12 Box plot (upper) of age at the time of surgery in men and women; Dot plot(lower) of distribution of age at the time of surgery by sex ...... 166 Figure 13 Pathway of need assessment to outcome of interventions: survey findings summarised ...... 176

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List of Tables Table 1 Burden of vision impairment and blindness by age group and sex, 2010 ...... 4 Table 2 Estimated population of people 60 years of age or older in developed and developing countries 2010-2050 ...... 10 Table 3 Pakistan’s key development and health indicators ...... 16 Table 4 Pakistan’s expenditure on health in comparison with its neighbours and other countries in the region ...... 23 Table 5 The number of health care facilities in Pakistan ...... 24 Table 6 The number of health care workers in Pakistan ...... 26 Table 7 Principal causes of blindness and vision impairment in Pakistan ...... 27 Table 8 Targets of the national programme for Prevention & Control of Blindness for 2005- 2010 ...... 31 Table 9 Eye workforce in Pakistan by cadre* ...... 33 Table 10 The number of world fishers and fish farmers by region in 2010 ...... 36 Table 11 Factors contributing to vulnerability and poverty among fishing communities ...... 38 Table 12 Key findings of the included studies in systematic review of status of eye health among fishing communities ...... 42 Table 13 The main inputs and outputs of the national eye care plan in Pakistan ...... 46 Table 14 Division of the rights in UDHR into 6 families...... 50 Table 15 Human rights related to the leading causes of worldwide vision loss ...... 61 Table 16 Need-based juxtaposed with human rights-based approaches ...... 75 Table 17 Events calendar used to determine age of subjects in 2009 ...... 92 Table 18 Demographic and socioeconomic characteristics of survey participants (n=638) by gender ...... 107 Table 19 Socioeconomic characteristics of survey participants (n= 638) by ethnicity...... 109 Table 20 Multivariable analyses of factors associated with the presence one or more eye problems (self-reported) in one or both eyes among survey participants (n=638)...... 114 Table 21 Prevalence of self-reported eye problems in one or both eyes among survey participants (n= 638) by gender ...... 116 Table 22 Profile of self-reported eye problems among survey participants (n=638) by cataract surgery status ...... 118 Table 23 Gender differences in the crude and age-standardised prevalence of vision loss ..... 120 xiii

Table 24 Age standardized prevalence of vision loss according to age, ethnicity, SES and other characteristics ...... 121 Table 25 Uni- and multivariable analysis of factors associated with presenting vision <6/12 in the better eye among survey participants (n = 638) ...... 122 Table 26 Cause of vision loss by gender among survey participants (n = 638) ...... 124 Table 27 List of the key available eye care facilities/providers* for the fishing and other populations in Karachi ...... 131 Table 28 Proportion of survey participants who received their last eye examination within the last 12 months, 2 years, 5 years or who ever had an eye examination (n = 638)...... 132 Table 29 Use of eye care by occupation, stratified by ethnicity (n=638) ...... 134 Table 30 Factors associated with ever having an eye examination among the survey participants (n=638)...... 135 Table 31 Gender differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349) ...... 137 Table 32 Ethnic differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349) ...... 138 Table 33 Socio-economic differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349) ...... 139 Table 34 Prevalence of eye disease symptoms among participants who cited lack of need as the only reason for not having had an eye examination (n=160) in comparison with those who cited other reasons (n=173) ...... 140 Table 35 Prevalence of vision impairment, and the degree of self-reported visual disability among participants who cited lack of need alone and those who cited other reasons for not having had an eye examination in the past ...... 141 Table 36 Univariate and multiple logistic regression analysis of factors associated with the perception of lack of need among individuals who reported not having had an eye examination in the past (n=333) ...... 142 Table 37 User experiences and acceptability of their recently visited eye care services (n=218) ...... 144 Table 38 Unacceptability of eye care and its determinants among survey participants (n=218) ...... 145

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Table 39 The principal reasons behind acceptability of the most recently utilised eye care service (n=124), according to gender ...... 147 Table 40 The principal reasons behind acceptability of the most recently utilised eye care service (n=124), according to type of facility visited ...... 148 Table 41 The principal reasons behind unacceptability of the most recently utilised eye care service (n=94), according to gender ...... 149 Table 42 The principal reason behind unacceptability of the most recently utilised eye care service (n=94), according to type of facility visited ...... 150 Table 43 Cataract surgical coverage by gender ...... 153 Table 44 Cataract surgical coverage by ethnicity ...... 154 Table 45 Cataract surgical coverage by self-reported financial status of the household ...... 155 Table 46 Gender differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181) ...... 156 Table 47 Ethnic differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181) ...... 157 Table 48 Socio-economic differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181)...... 158 Table 49 Gender, ethnic and socio-economic differences in the rate of cataract surgery among survey participants (n=638)...... 163 Table 50 Gender, ethnic and socio-economic differences in the proportion of operated eyes among survey participants (n= 1276 eyes)...... 165 Table 51 Presenting and best-corrected visual acuity in eyes that had undergone cataract surgery (n= 145 eyes)...... 167 Table 52 Visual outcome of cataract surgery by selected characteristics (n= 145 eyes)...... 168 Table 53 Uni- and multivariable GEE analyses of predictors of suboptimal visual outcome of cataract surgery (PVA < 6/18 [n= 145 eyes])...... 169 Table 54 Uni- and multivariable GEE analyses of predictors of dissatisfaction with cataract surgery (n=144 surgeries)...... 170 Table 55 Prevalence of, and factors associated with, irregular pupil in the operated eyes (n=137 eyes)...... 171 Table 56 Prevalence of astigmatism as assessed in 113 eyes that had undergone cataract surgery among survey participants...... 172 xv

Table 57 Socioeconomic status of the survey population, as compared with the national average for comparable age group! ...... 178 Table 58 Selected previous studies measuring access to eye care services in general population ...... 185 Table 59 Outcome of cataract surgery in the present study, and its comparison with WHO recommended standards ...... 201

xvi Plain language description of the study

The global burden of vision loss disproportionately affects the poor and vulnerable, especially women, older people, rural and remote dwellers and those with little or no formal education. Most of the 223.4 million people who are either blind or have moderate to severe vision impairment (MSVI) live in resource poor countries.1 Much of this vision loss is avoidable through prevention or treatment. Vision impairment and blindness have received remarkable attention globally and nationally but with insufficient focus on those most difficult to reach and having unequal access. This doctoral thesis research is focused on the eye health of marine fishing populations living in Karachi, Pakistan’s port city. Globally, marine fishing communities are among the most marginalised and hard- to-reach groups; health research with these communities is time-consuming, expensive and unpredictable given that most male members are at sea for lengthy periods. Marine fishing is one of the world’s most dangerous occupations, with high rates of fatal and nonfatal injuries.2-11 There is also a constant risk to the few assets these communities possess such as boats and equipment. Hounded by daily worries of survival, most male members are at sea for lengthy periods and it is hardly possible for them to pay attention to their health as well as that of their families. In Karachi, Pakistan, the women in the community take major responsibility for the housekeeping, shrimp cleaning or travel daily to their neighbouring affluent areas to work as housemaids. Both housemaids and shrimp cleaners are amongst the lowest paid workers in the country.12 These communities often have low literacy rates, and are very poor and isolated.13 The Karachi Marine Fishing Communities Eye and General Health Survey was a cross- sectional study of males and females aged ≥ 50 years in the marine fishing communities living on three islands and in four coastal areas in Karachi, on the coast of the Arabian Sea. The fishing communities in Keamari, Karachi comprises mainly of three ethnic groups, Kutchi, Sindhi and Bengali. Among the three, the Bengalis are considered the most vulnerable because many of them are thought to have migrated illegally to Karachi from Bangladesh. These issues are covered in much more detail in subsequent chapters.

1. The main research questions

1. What is the burden of vision impairment and blindness among adults aged ≥ 50 years in the marine fishing communities in Karachi, Pakistan? Who, within these communities, is most affected? 2. What is the status of access to eye care services and what determines access? What are the self-perceived barriers to the uptake of eye care services, including cataract surgery? 3. What is the acceptability of available eye care services from the users' perspective? 4. What are the quality and outcomes of cataract surgery in these communities?

2. Scope and outline of this study

This thesis is structured in 8 chapters. Chapter 1 reviews epidemiological literature on global eye health in general and on cataract-related vision loss in particular, and outlines major challenges in relation to global eye health. The next chapter, Chapter 2, covers these issues in the context of Pakistan, and highlights its complex socio-political and development environment as well as health system. Chapter 3 narrows the discussion down to the fishing communities and reviews available literature on the health, health- related lifestyle, socioeconomic status and eye health of these populations living in Pakistan as well as other countries. Chapter 4 analyses the literature on health, human rights and development with particular reference to the links between eye health and human rights and suggests ways in which the two can benefit from each other. Chapter 5 presents a discussion and justification of the research methods used in the study, while Chapter 6 presents the key findings. Chapter 7 summarises and interprets the key results, discusses the limitations of the study as well as implications of the findings. Chapter 8 discusses the results of the study from a combined health and human rights perspective (Figure 1) and concludes the thesis.

Context

Goals •International covenants, treaties and consensus documents signed/ratified by the government •National constitution •Policy •Laws and regulations

Process •Equality/non-discrimination

•Participation Context •Accountability

Context Content •Availability •Accessibility •Acceptability •Quality

Outcomes •Outcomes of projects •Outcomes of programmes •Outcomes of other activities

Context Figure 1 Applying a rights-based approach to eye health in fishing communities in Karachi, Pakistan

Chapter 1 GLOBAL EYE HEALTH: DISEASE BURDEN AND RESPONSE

This chapter reviews epidemiological literature on global eye health with a particular focus on age-related cataract which is the leading cause of worldwide blindness and vision impairment. It then examines published literature on interventions for the prevention and treatment of cataract, specifically behavioural modifications and surgery. Next, the chapter presents a critical overview of the state of cataract surgical services in low- and middle- income countries (LMICs) and the challenges they face.

1.1 Global eye health

The term “eye health” is used to describe vision loss (defined as presenting visual acuity [PVA] <6/12 in the better eye)—which includes both vision impairment (PVA < 6/12 but ≥ 3/60 in the better eye) and blindness (PVA <3/60 in the better eye) and their causes, eye care human resources, eye health programmes and services, and the policy context.14,15 The most recent estimates by the WHO suggest that 285 million people were visually impaired worldwide in 2010, of whom 39 million people were blind and 246 million had moderate or severe vision impairment (MSVI; PVA < 6/18 but ≥ 3/60 in the better eye).16 A further update, by the Vision Loss Expert Group of the Global Burden of Disease Study, estimated that globally 32.4 million people were blind in 2010 and 191 million people had MSVI (Table 1). Most of them lived in LMICs such as India, China, Indonesia, Pakistan, and Nigeria in which health systems are fragile and the per capita expenditure on health

Table 1 Burden of vision impairment and blindness by age group and sex, 2010

Age group Moderately or Severely Visually Impaired Blind Male Prevalence %* No. in Millions* Prevalence % No. in Millions 0-49 years 0.72 (0.63-0.91) 20 (18-26) 0.08 (0.07-0.09) 2.2 (1.9-2.5) 50-69 years 6.6 (5.9-7.9) 35 (31-42) 0.85 (0.74-0.97) 4.5 (3.9-5.1) ≥ 70 years 18.8 (17.0-22.0) 28 (25-33) 4.2 (3.7-4.8) 6.2 (5.5-7.0) Female 0-49 years 0.89 (0.78-1.1) 24 (21-30) 0.10 (0.09-0.12) 2.8 (2.4-3.2) 50-69 years 7.9 (7.2-9.5) 43 (39-52) 1.1 (1.0-1.3) 6.2 (5.5-7.1) ≥ 70 years 20.9 (19.1-24.6) 42 (38-49) 5.3 (4.8-6.0) 10.6 (9.6-12.1) Source: Stevens GA, White RA, Flaxman SR, et al. Global prevalence of vision impairment and blindness: magnitude and temporal trends, 1990-2010. Ophthalmology 2013; 120(12): 2377-84. *95% Confidence intervals are shown in parentheses. 4

limited, thus constraining interventions against both existing and emerging public health challenges. Much of the blindness and MSVI are concentrated among those who are poor and vulnerable, especially women, older people, rural and remote dwellers and those with little or no formal education. Indeed, 60% of all blindness and 57% MSVI worldwide occur among women. Approximately 80% cases of cases of MSVI or blindness occur in people aged ≥ 50 years—although they make up approximately only one-fifth of world’s total population. Yet, this situation offers a major opportunity to reduce inequalities and enhance health outcomes given that 65% of blindness and 76% of MSVI are preventable or treatable17 if cost-effective interventions are properly scaled up, trust between communities (especially marginalised ones) and health care providers is bridged, and outcomes are improved.18,19 Proper scaling up of cataract surgery and refractive services in LMICs alone can provide good vision to the majority of the visually impaired or blind people. However, current coverage levels in these settings remain unacceptably low and unevenly distributed despite many recent improvements.20,21 The following sections present scientific literature on the aetiology and epidemiology of cataract as well as insights regarding interventions for the prevention and treatment of this condition.

1.2 Cataract: The role of prevention

The lens is a clear avascular part of the eye whose function is to focus light or an image on the retina. Once it touches the retina (the light-sensitive part at the back of the eye), light is converted into nerve signals, which are transmitted to the brain. Cataract develops when some of the proteins in the normally transparent lens clump together and block the light partially or completely from reaching the retina. Depending on the size and location of the aggregated proteins, vision may be partially or completely lost until the opaque lens has been removed. Common symptoms of cataract include blurring and worsening of vision, fading of colours, decreased night vision, problems with bright lights and sunshine and double vision or multiple images in one eye.22 There are four types of cataracts, classified according to the location of the opacity on the lens: cortical, nuclear, posterior sub-capsular, and mixed. Each one of these can occur in isolation or in combination (mixed cataract). Nuclear cataract, located in the centre of the lens, is the most prevalent type and is strongly associated with aging. A cortical cataract is one in which the opacity develops in the soft outer part of the lens called cortex and gradually extends towards its centre. Cortical cataract, the second most

prevalent type of cataract, is known to be highly heritable.23 Evidence from population- based studies suggests that cortical cataract is associated with exposure to solar ultraviolet B (UVB).24-27 There are a number of occupational groups which are at high risk of developing cortical cataract. These include fishermen, glassblowers, and furnace workers because UV radiation is reflected off surfaces such as water, snow and white sand. Also at increased risk are people living in agrarian societies, who spend a lot of their time outdoors farming while wearing no protective sunglasses. The third type is posterior subcapsular cataract which develops in the back of the lens just anterior to the posterior capsule in the line of visual axis and is associated with diabetes, the use of steroids, high body mass index (BMI) as well as myopia.28 Age is the single most important risk factor for cataract. Approximately 85% of all cataracts are age-related and it remains largely unclear why it is so.29 Indeed, for each successive 10 years after age 40 years, there is an exponential increase in the risk of having cataract. Cataract affects women disproportionately. The cause of these gender differentials in the occurrence of cataract remains unclear but could be related to the hormonal differences between women and men.28 Moreover, women face unique socio-cultural barriers to accessing cataract surgical services once they have vision impairment or blindness due to cataract. A recent review of 23 population-based studies from across LMICs revealed that 21 studies had lower cataract surgical coverage (CSC) among women than men.30 A meta-analysis of these surveys revealed that women were nearly half as likely as men (Peto odds ratio 1.72, 95% CI 1.47-1.96) to have cataract surgery. Gender, like age, is a non-modifiable factor. However, closing the gender gap and other disparities in access to surgery are critical for the success of current and future cataract surgical programmes.31 The two other important risk factors for cataract are exposure to sunlight and cigarette smoking, both of which are modifiable. Population attributable risk (PAR), the portion of the incidence of a disease in the population that is due to an exposure or several exposures, provides the basis for public health interventions. The WHO estimates that as many as 20% of the cataracts may be due to UV radiation exposure alone.32 Another report suggests that population risk for cataract attributable to both smoking and UV-B exposure is 14%.33 The widespread use of wide-brimmed hats and ultraviolet-B blocking sunglasses especially in areas with high UV radiation has been advocated, especially early in life, to reduce the risk of cataracts. Similarly, it is argued that reduction in or elimination

of smoking would yield significant reduction in the burden of cataract. However, such interventions have not been used in the global blindness prevention and control programmes because the risk attributable to both ultraviolet light and cigarette smoking is small and implementation of such interventions at global or national scale is not easy or cost-effective. The use of antioxidants and multivitamins or mineral supplements for the prevention of cataracts remains a matter of controversy. A systematic review, undertaken by the Johns Hopkins University Evidence-based Practice Center, found no evidence of benefit from multivitamin or mineral supplements in the prevention of cataracts.34 The WHO35 states:

Comprehensive prevention of cataract development is not known yet. Reduction of cigarette smoking, ultraviolet light exposure, and alcohol consumption may prevent or rather delay the development of cataract. Diabetes mellitus, hypertension and high body mass index are identified as additional risk factors.

Brian and Taylor33 comment: The benefits of cataract prevention are obvious, but unfortunately, the likelihood of achieving it is remote. However, a delay of 10 years in the onset of cataract would, with today‟s criteria for surgical intervention, halve the number needing surgery. In Australia, where the median age for developing cataract is in the eighth decade, this reduction would be achieved with only a 14% delay in the onset rate.

In the absence of any effective ways to prevent cataract-formation or reverse existing cataracts in the lens, cataract surgery is the only effective treatment. There are four main types of cataract surgical techniques: intra-capsular cataract extraction (ICCE), extracapsular cataract extraction (ECCE), phacoemulsification (phaco) and manual small incision cataract surgery (MSICS). Each of these has their distinct advantages and disadvantages. ICCE which is now performed by only a small proportion of surgeons became widely used in 1960s and 1970s; the technique involves removing the lens and the surrounding lens capsule in one piece and leaving the eye aphakic (without a lens). The patient's vision is subsequently corrected by very thick eyeglasses. ICCE is relatively inexpensive and easy to perform. It can take only 3-5 minutes. However, the problem is that patients need to wear thick eyeglasses after surgery, which is not cosmetically 7

pleasing to many, especially women. In the long term, many people may become blind due to lost or broken spectacles or the development of retinal detachment. ECCE successfully addressed the problem of lost or broken glasses associated with ICCE. The procedure started replacing ICCE in the early 1980s and is now one of the most widely used techniques for cataract surgery in LMICs. It involves removing the natural lens while leaving the posterior capsule (that covers the back of the lens) intact to allow implantation of an intraocular lens (IOL). ECCE require a large incision, approximately 9-12 mm. The wound needs closure with sutures. In many urban centres in LMICs, ECCE is fast being replaced by small incision, sutureless surgery such as phacoemulsification. In phacoemulsification, an ultrasonic device is used to break the cloudy lens. Lens pieces are suctioned out followed by the implantation of a foldable IOL. Because the incision is much smaller than the one for ECCE, visual recovery can take as little as one to two days. The procedure has been shown to provide the best visual outcomes in randomised controlled trails36 and is the standard of treatment for cataract in developed countries. However, the high cost of foldable IOLs, phacoemulsification equipment, maintenance and training are major barriers to establishing such services in LMICs, especially in rural and remote areas. MSICS is a modified form of ECCE, but require no sutures. A 2006 Cochrane review36 concluded that:

“[MSICS] provides early visual rehabilitation and comparable visual outcome to Phaco [and] has better visual outcomes than ECCE and can be used in any clinic that is currently carrying out ECCE with IOL”.

1.3 Global burden of cataract-related blindness and vision impairment

As mentioned earlier, cataract remains the single most important cause of vision loss worldwide, accounting for approximately 33.4% of all blindness and 18.4% of MSVI (Figures 2 and 3). In numeric terms, cataract is the principal cause of blindness in 10.8 million people and MSVI in another 35.2 million people worldwide.17 It is estimated that globally there are approximately 100 million eyes with cataract causing a VA < 6/60, and 300-400 million eyes with cataract causing VA < 6/18. Annually, at least 25 million eyes develop VA <6/60 due to cataract and 3-4 times this number develop VA <6/18. Globally, the need for cataract operations is at least 30 million per year, but only around 15 million cataract operations are performed.37

As mentioned previously, cataract is strongly age-related.28 The world's population is aging. The proportion (number) of people 60 years of age or older in the world is increasing rapidly and is projected to reach 13.4% (1 billion) by 2020 and 21.9% (2 billion) by 2050—from 12.2% (890 million) in 2015.

Other causes/ unidentified 28%

Cataract 33%

Trachoma 1% Diabetic retinopathy Uncorrected 3% refractive error Glaucoma 21% 7% Macular degeneration 7%

Figure 2 Global causes of blindness in 2010

Other causes/

unidentified Trachoma 21% 1% Cataract Diabetic 18% retinopathy 2% Glaucoma Macular 2% degeneration 3% Uncorrected refractive error 53%

Figure 3 Global causes of moderate or severe vision impairment in 2010

As Table 2 indicates, most of this increase will occur in LMICs.38 While considerable gain in life expectancy in these countries reflects effectiveness of public 9

Table 2 Estimated population of people 60 years of age or older in developed and developing countries 2010-2050 World More developed Less developed Least developed regions regions regions Year (000) % (000) % (000) % (000) % 2010 759,110 11.0 269,201 21.8 489,909 8.6 44,270 5.2 2020 1,030,539 13.4 323,148 25.5 707,390 11.0 62,452 5.9 2030 1,370,386 16.5 369,470 28.8 1,000,916 14.2 88,937 7.0 2040 1,683,510 19.1 397,873 31.0 1,285,637 17.1 128,965 8.7 2050 2,008,244 21.9 416,055 32.6 1,592,188 20.2 185,129 11.1 Source: World Population Prospects: The 2008 Revision Population Database. health interventions, it has also increased demands on health care, including eye care, as a result of age-related diseases such as cataract which disproportionately affect older adults. While the number of cataract operations is increasing in most countries, this is not enough to compensate for the rise in incidence due to the aging of the population. Taking VA <6/60 cut off for cataract surgery, the current global need for cataract operations is at least 30 million per year. This annual need will rise to 75 to 100 million operations if the threshold for cataract surgery is changed to VA <6/18 from < 6/60.39 But as mentioned earlier, the annual current output (10 million surgeries) is not enough to meet the demand at all.

1.4 Key challenges in addressing global cataract blindness and vision impairment

1.4.1 Availability of cataract services

Cataract surgery remains one of the most cost-effective health interventions. In 1993, a World Bank report titled World Development Report 1993: Investing in Health placed cataract surgery among interventions with the lowest cost per DALY averted.40 One-year of “lost healthy life” can be averted by cataract surgery, which may cost only US $15–32. Vision 2020 recommends a static facility that can deliver cataract surgical services (as a minimum) eye care for a population of approximately 0.5–2 million.41 An ophthalmologist can perform 1000 to 2000 or more cataract surgeries a year in a well-managed,

adequately staffed facility if barriers to access are addressed and high quality of cataract surgery is provided. Indicators that can be used to measure availability are: the proportion of health administrative areas with static eye care or cataract surgical services, the number of cataract operations performed per year per million population (Cataract Surgical Rate [CSR]) and the proportion who were eligible for cataract surgery that received it (also called cataract surgical coverage). Some of the factors that can determine the minimum required CSR of a given country or region are: 1) the prevalence and incidence of cataract blindness and vision impairment, 2) population density, 3) socioeconomic status, and 4) the threshold of vision impairment used as an indication for cataract surgery.41 According to Taylor and Keefe,42

Before the advent of intraocular lens surgery, surgery was delayed until the vision was 6/60 or less. This level of acuity resulted in economic blindness. Now the level of visual acuity that could be described as economic „blindness‟ is less than 6/12. This is the level of visual acuity usually needed to hold a driver's licence. Vision less than this not only has an economic impact, but it also affects independence and mobility in areas where driving a motorcar is almost essential for daily living.

The WHO has set a CSR target of 3000 surgeries per million population for LMICs as the minimum necessary to eliminate cataract blindness by the year 2020. However, in most countries in Africa, the CSR is disappointingly low—less than 1,000 cataract operations performed per year per million population. By contrast, LMICs like India have made substantial progress in the last two decades, increasing its CSR to over 4,500 per million population today from 1342 in 1989-90 and 3,620 in 2001.43 This success in India has been mainly due to the Indian government’s support for free cataract surgeries with IOL implantation in the late 1990’s in many states, availability of trained human resources, and the local production and availability of cheap IOLs, consumables and equipment. In developed countries, the CSR is 4,000 to 6,000 operations per year per million population.39 Just as there are differences in CSR within nations and the world’s regions, there are sub-national and regional differentials. For example, CSR in indigenous Australians is 6.9 times lower (1,370) than in Australia as a whole (9,500).44

1.4.2 Access to cataract services

Although eye care services have expanded significantly in LMICs over the last two decades,45-47 access to them is not uniform. Recent population-based surveys—Rapid Assessment of Avoidable Blindness (RAAB), a modified version of Rapid Assessment of Cataract Surgical Services (RACSS)—in LMICs have provided valuable information on how cost, lack of information about services, transport difficulties and fear could impede access to cataract surgical services.48-55 Cost has been identified as the single most important barrier to the uptake of cataract surgery.56-58 A recent age- and sex-matched case-control study conducted in three low-income countries, namely Kenya, Bangladesh, and the Philippines provides evidence of a significant association between vision impairment from cataract and poverty. Individuals with vision loss due to cataract were poorer than their counterparts with normal vision in all three countries,59 highlighting the need for increased provision of cataract surgery to the poor. In the Pakistan National Blindness and Visual Impairment Survey, a strikingly high 76.1% of 356 individuals in whom cataract was the principle cause of VA < 6/60 in the better eye reported cost as a barrier to uptake followed by lack of knowledge of the condition (11.5%), waiting for the cataract to mature (9%), no escort (1.7%) and fear of surgery (1.4%).56Another population-based study among individuals ≥ 50 years of age in Orakzai Agency in Pakistan also reported cost as the single most important reason for poor uptake of cataract surgery (reported by 73.3% people with bilateral cataract blindness), followed by ‘cataract is not yet mature’ (10.7%), fear of surgery (6.7%), need not felt (6.7%), lack of knowledge of the condition (1.3%), and no one to accompany (1.3%). A rapid assessment of avoidable blindness conducted in 16 districts in India’s 15 most populous states in 2007 indicated that only 11.9% individuals (with VA <6/60 in the better eye or in one eye due to cataract) reported cost as a barrier. This finding may be due to the fact that availability and affordability of cataract surgery has increased substantially, primarily due to the World Bank-assisted cataract blindness control project since 1994, mass production of cheap IOLs, the popularity of MSCIS as a cost-effective alternative to phacoemulsification and the establishment of many charity-based hospitals which provide free or subsidised eye care services. Current blindness prevention programmes have mostly focused on making cataract services geographically accessible and minimizing the cost of cataract surgery. However, there are concerns that it is too simplistic to blame these two factors for the

generally low cataract surgical output worldwide. A complex interaction of social, economic, cultural, motivational, and informational and other factors determine whether some people who are blind and visually impaired due to cataract will undergo cataract surgery. A significant proportion of people with vision loss due to cataract are not aware that the cause of their vision loss is treatable. Chibuga and colleagues60 identified 128 individuals who were eligible for cataract surgery in 12 villages in Hai district of Kilimanjaro region, Tanzania and were informed of regular services (within 5 km2) providing transportation and cataract surgery. At years 1 and 2 after the survey, 97 could be followed up. Only 22 had accepted surgery—18 in the first year and 4 in the second (only 5 who went for surgery were blind or had severe vision impairment). The elderly were the least likely to accept surgery. “Focusing too narrowly on the monetary costs (direct or indirect) of cataract surgery may lead us to miss other critical social determinants that keep people blind”, cautions Lewallen.61

1.4.3 Quality of cataract services

The WHO62 recommends that more than 85% of cataract surgeries achieve a good visual outcome (PVA: 6/18 or better) with fewer than 10% having borderline(<6/18-6/60) and less than 5% having poor (< 6/60) outcomes. However, population-based data that exist suggest that a quarter to a third of all cataract surgeries in many LMICs leave people with poor visual outcome.63 For example in Pakistan’s national eye survey,64 only 29.5% of the operated eyes (n = 1788) had good outcome whereas 35.3% and 34.3% had borderline and poor outcomes. Visual outcomes with best-corrected vision/pin-hole were assessed in 1721 operated eyes. But even after correction, the outcomes were far below the WHO’s standards—52%, 28.6% and 19.4%. Factors associated with poor outcome in the study included eye camp surgery, ICCE, rural residence, female gender and illiteracy. This survey adds strength to the previous data obtained in several district/agency-wide studies in Pakistan such as in Malakand,65 Orakzai58 and Chakwal.66 All of them reported poor outcome in 32-43% operated eyes. The outcomes are also not encouraging in the neighbouring India where more than 5 million cataract surgeries are performed each year. In the Rapid Assessment of Avoidable Blindness survey in India, conducted in 16 districts in India’s 15 most populated states in 2006-2007, a total of 7288 cataract surgeries were evaluated. Of these, 55.9%, 21.3% and 22.8% had good, borderline and poor outcomes, respectively. For IOL surgery (n= 4633), these values were 69.9%, 19.6% and 10.5%

whereas for surgery without IOL (n=2655) these were 31.5%, 24.4%, and 44.1%. The situation reported in the surveys in many other countries in the South Asia, Latin America and Africa is not much different.53,67-69 An important limitation of many of these studies, however, is their inability to examine users’ perspectives of quality of care as well as the process by which the outcomes are obtained as they have focused almost exclusively on a single indicator of quality of cataract surgical care, Snellen’s visual acuity.70,71

1.5 Summary points of Chapter 1

. The Vision Loss Expert Group of the Global Burden of Disease Study estimated that globally 32.4 million people were blind in 2010 and 191 million people had MSVI. . Cataract is the most important global eye health issue (accounting for approximately a third of global blindness) and is therefore the main focus of attention of the current blindness prevention and control efforts in low-and middle-income countries, including Pakistan. . 85% of cataract cases worldwide are age-related. At present, there are no effective preventive approaches for cataract. Cigarette smoking and ultraviolet light exposure are two important modifiable risk factors, but their combined population attributable fraction is only 14% and they are not easily prevented. . Surgical removal is the only effective way to treat cataract. Cataract surgery has been shown to be one of the most cost-effective public health interventions in terms of cost per DALY averted. Cataract surgical services in LMICs have witnessed significant growth in the past 20 years, but inadequate access, especially for women and other disadvantaged groups, and the poor quality of services, remain major challenges.

Chapter 2 PAKISTAN: HEALTH, HEALTH SYSTEMS AND EYE HEALTH

This chapter introduces the physical, economic, and socio-political environment of Pakistan where this research was carried out. It focuses on the overall health status of Pakistan’s population and highlights the progress made by the country towards achieving the health-related Millennium Development Goals (MDGs) by 2015. The growing burden of non-communicable diseases (NCDs) and hepatitis B and C are discussed, followed by an overview of the health system in Pakistan. The latter part of the chapter narrows the discussion down to the prevention and control of blindness in Pakistan, especially the burden of major eye diseases and the attention they have received from the government and non-governmental organisations.

2.1 Population, geography, and administrative divisions

Pakistan is a large South East Asian country with a population of around 179 million (Table 3). Its population is relatively young (median age 21) with 37% of its people less than fifteen years of age. Around 37% of Pakistan’s population now live in urban areas given a consistently high rural to urban migration rate.72 Pakistan’s population is ageing (as life expectancy continues to increase) while still maintaining high annual growth rate (1.5%). The country is spread over an area of 796,095 km2 (excluding Pakistani- administered Kashmir; area 83,716 km2), bordering Iran on the west, Afghanistan to the north and northwest, China on the northeast, India on the east and southeast, and the coast of the Arabian Sea to the south. Administratively, Pakistan comprises five provinces (Sindh, Punjab, Baluchistan, Khyber Pakhtunkhwa, Gilgit-Baltistan), two administrative areas (Islamabad Capital Territory, Federally Administered Tribal Areas) and two special administrative areas (Azad Jammu and Kashmir and Northern areas).73 The provinces are subdivided into districts, sub-districts (tehsils, or taulkas), and villages or municipalities. Under the Devolution of Power Plan announced by former president Pervez Musharraf in 2000, districts in Pakistan had local governments, until 2008, were run by an elected Nazim (administrator) with administrative and financial powers. Subsequent governments abandoned this plan.

Table 3 Pakistan’s key development and health indicators Indicator Estimates Total population, 2012 179,000,000 Population living in urban area (%), 2012 37 Total fertility rate (per woman), 2012 3.3 Gross national income per capita ($), 2012 2,880 Population living on <$1 a day (%) 2000-2007 22.6 Life expectancy at birth (years)*(Male, female, both sexes), 2012 64, 66, 65 Probability of dying between 15 and 60 years of age m/f (per 1000 190/157 population), 2012 Sources: World Health Organization’s World Health Statistics 2014 and http://www.who.int/countries/pak/en/

Pakistan is a multi-ethnic country and is comprised mainly of Punjabis, Pakhtuns, Sindhis, Seraikis, Mohajirs, Balochs, and Hindkowans. The Punjabis account for nearly 44% of the total population and mainly reside in Punjab, which is the most populous province of the country. The Pakhtuns (Pushtuns or Pathans) are the second major ethnic group, making up one-eighth of the population. They are the predominant ethnic group in Khyber-Pakhtunkhwa and FATA, which are currently struggling to tackle the ongoing Taliban insurgency, and which are still home to 2 million Afghan refugees. Lack of opportunities in the province has forced millions of Pakhtuns to seek jobs in more developed regions of the country, especially Karachi, or abroad, mostly in the Middle East. Sindhis comprise 12% of Pakistan’s population and dominate the rural part of the Sindh province while the Mohajirs—Muslims who migrated to Pakistan from India after the partition in 1947—constitute 8% of the population and dominate the urban part of the Sindh, especially the cities of Hyderabad and Karachi, which is the economic hub of the country. Balochs live in Baluchistan which is the largest province by size and the richest in natural resources, notably natural gas and oil, but the least developed and most impoverished. Its two major ethnic groups, the Balochs and the Pakhtuns, have been demanding a greater a control over these resources, and a fair share of the gas royalties, but with little success.

2.2 The development context

Pakistan was ranked 146th in global human development index (HDI) among 178 countries in 2012.74 HDI is a composite measure of life expectancy, educational status and standard of living (measured by purchasing power parity and income) and has been used

to measure the average progress of a country in human development. Poverty is widespread and about a quarter of the country’s population lives on less than one dollar per day (Table 3). Food prices have risen dramatically over the last decade, as have the prices of housing, energy and all other goods and services. Malnutrition is common among children under 5.72 As UNICEF75 noted:

Food and economic crises have increased food insecurity. Prices of essential food items rose over 35 per cent in 2007-08, compared to an 18 per cent increase in labour wages.

While progress has been made to achieve universal primary education in the country by 2015, an estimated 28% boys and 40% girls are still not enrolled in schools and the current pace of progress is too slow to achieve the Millennium Development Goal (MDG) of universal primary education. About half of boys and two-thirds of girls who are enrolled do not complete primary school.75 Even if attendance improved, the quality of schooling maybe sub-optimal.76 In the conflict-hit tribal areas, schools have been the primary target of militant groups. Scores of schools have been destroyed since the conflict started in 2007.77

2.3 Health status of the Pakistani population

Although improving, the health status of Pakistan’s population, especially women and those living in rural areas, is still low. The country is still struggling with the unfinished agenda of infectious diseases and perinatal and nutritional disorders while facing the growing threat of non-communicable diseases and hepatitis B and C. This is compounded by high-impact natural disasters such as earthquakes and floods as well as the growing conflict between Pakistan's military forces and militant groups. Self-rated health (SRH) is a widely used measure of the overall health status of a population.78 The National Health Survey of Pakistan (NHSP), conducted between 1990 and 1994, measured SRH in a nationally representative sample of 9,442 people ≥ 15 years of age.79 Overall, 65.1% Pakistanis (51.3% men vs. 77.2% women) rated their health as poor or fair. The prevalence of poor or fair health in Pakistan, especially amongst women, is one of the worst ever reported. Health status is a broad concept and includes physical, psychosocial, and mental health and their determinants. The following discussion is focused mainly on maternal and child mortality, infectious diseases and non- communicable diseases as these three make much of the disease burden in the country. 17

More than 15,000 women in Pakistan die every year from complications related to pregnancy and childbirth. This can be explained by the fact that only 49% of the births taking place in the country in 2012 were attended by skilled health personnel.80 Other key determinants of maternal mortality ratio (MMR; the number of maternal deaths per 100,000 live births) include high fertility rates, low income, low maternal education, rural residence, and inadequate emergency obstetric care. The Pakistan Demographic and Health Survey (PDHS) 2006-2007 showed MMR is 276—almost two fold higher in rural areas compared with urban ones (319 vs. 175). Data for 2013 show that MMR is 170.80 This means that Pakistan is unlikely to achieve its Millennium Development Goal of reducing its MMR to less than 140 by the year 2015.81 The failure in Pakistan as in many other LMICs results from a lack of widespread availability of and access to emergency obstetric services as part of an effective health system necessary to prevent maternal deaths.82 Hogan and colleagues 83 reported that in 2008, a total of 342,900 (302,100– 394,300) maternal deaths occurred in the world—down from 526,300 (446,400–629,600) in 1980; Pakistan ranked third among six countries that account for more than half of all worldwide maternal deaths. In an accompanying commentary Horton84 said:

“The apparent failure to reduce maternal mortality during 20 years of the Safe Motherhood movement has been one of the most deforming scars on the body of global health. This striking lack of progress, despite maternal mortality reduction being awarded its own Millennium Development Goal (MDG-5) in 2000, has been a source of puzzlement and embarrassment to global health leaders”.

Like maternal deaths, most of the child deaths also occur in low- and middle- income countries (such as Pakistan) and are preventable.85 Most of the child deaths occurring in Pakistan annually can be prevented if universal coverage with effective and affordable interventions for new-bornn care or against diarrhoea, respiratory infections, malaria and sepsis are achieved. Pakistan has witnessed a decline in the rates of under-5 and infant mortality in the period between 1990 and 2013. The targets are to reduce under-5 mortality and infant mortality rates to 52 and 40 by 2015—down from 130 and 101 in 1990, respectively.81 Pakistan needs to do more to achieve the targets set by MDG 4—reduction in child deaths by two-thirds from 1990 levels. The overall routine immunisation coverage rate in young children is still below 90%. This is partly due to the ongoing conflicts in several parts of the country, population displacements and floods— 18

compounded by chronic health system problems such as massive corruption and poor management capacity, shortage of health workers, targeting of immunization workers. Many children are missed and continue to die from vaccine-preventable conditions. Infectious diseases such as malaria and tuberculosis remain undefeated. Hepatitis B and C have been a growing and neglected public health threat.86-90 An estimated 10-15 million people are living with these conditions, which have resulted in a major increase in the number of people with chronic liver diseases, and which put significant demand on health care systems.91 The use of contaminated needles and other sharp instruments and unsafe blood and blood product transfusion have been implicated as the major causal factors.88 Most of the injections are administered by unqualified or unlicensed personnel in the private sector. The extent to which Pakistan can take steps to change the behaviour of hundreds of thousands of these “unlicensed” health workforce members remains unclear since the government has no effective control over the way they practice medicine.91 Non-communicable diseases (NCD) are another silent killer, accounting for nearly 50 per cent of the burden of disease in the country. Yet, successive governments have ignored them. For example, the National Health Policy 2001 did not even mention NCDs.92 Pakistan is among the top 10 countries in the world with high numbers of diabetics. A third of Pakistanis more than 45 years of age have hypertension. Tobacco use is common and obesity is on the rise. Although more than a quarter of the population has at least one risk factor for NCDs, it was not until 2004 that NCDs attracted government attention and a national plan for NCDs was unveiled.93,94

2.4 Health system in Pakistan

At partition in 1947, Pakistan inherited a weak health care system. There were only a limited number of health care services. The physician-to-population ratio was 1:500,000. Under colonial rule, the health care system, whether aimed at providing preventive or curative services, was never designed to address the health needs of the general population. Rather, the entire health system was engineered to protect the British military as well as other government servants from epidemics and communicable diseases. As one Australian physician95 who had spent time in a mission hospital at Quetta recalls:

Fearing Russian encroachment via Afghanistan, the British military commanders of the day considered the chain of missionary hospitals positioned along 19

the frontier, including the one at Quetta, to be the equivalent of several battalions. These missions, in effect, garrisoned the border with Afghanistan, supplementing the forts along the thousand miles from Iran to China.

Soon after partition, Pakistan sided with the United States in its Cold War struggle against the Soviet Union. In 1958, General Ayub Khan took over as president in a military coup. All political parties were banned and the constitution abrogated. An impressive growth of economy and the rapid industrialisation of the country—in large part resulting from aid from the USA and its allies—brought a great deal of prosperity to the country during his rule (1958-1969). The first major health planning exercise, reflected in the Second Five-Year [Development] Plan (1960-65), started in this area. Substantial health care infrastructure development took place at this time, especially in the urban areas. At the end of the 1971 conflict between East and West Pakistan, which led to the creation of independent Bangladesh, Bhutto came to power and significantly changed Pakistan's pro-capitalist system. He introduced socialist economic reforms that included the nationalisation of all major industries, colleges, and schools in the private sector. A decentralised health system with a network of primary health care centres was launched across the country. Each Basic Health Unit (BHU) catered for a population of 6000 to 10000. For around 4-5 BHUs, there was a Rural Health Centre (RHC) that aimed to provide more comprehensive health services. Both BHUs and RHCs could refer patients to secondary or tertiary health care centres in the urban centres. According to Burki, the initiative had a strong rural bias as the health minister in Bhutto’s cabinet was a 'rural socialist’.96 Bhutto, who personally launched the new health initiative, said at that time:

These units...will not be of the type we have known so far. Each one shall be headed by a graduate doctor, a lady health visitor and other health technicians.

A rigged national election in 1977 to favour ruling Bhutto’s victory pushed Pakistan toward chaos. On July 5, 1977, General Zia-ul-Haq who then led Pakistan's army staged a military coup, seized power, and remained the head of state until his death in 1988. Under Zia’s rule, Pakistan was a major recipient of western aid during the Soviet Afghan war, when Pakistan joined hands with the USA and its allies to support Afghan Mujahideen fighters to drive the Soviet troops out of Afghanistan.

The 1978 Alma Ata Declaration on Primary Health Care (PHC) which called for a radical transformation of conventional health care systems into ones whose primary focus is primary health care was a major impetus behind the establishment of a large network of primary health centres as well as secondary and tertiary hospitals. However, the primary health facilities failed to achieve the desired improvements in the health status of the population and they remain disappointingly underutilised. In addition, questions have been raised about the value of the present level of investment in these facilities.97 Factors associated with low utilisation of existing primary health care services include poor geographic accessibility, staff absenteeism, infrequent availability of essential medicines, high out-of-pocket payment, and poor attitude of staff.97 Poor performance means the government has started contracting out this network of national hospitals to non-governmental organisations in selected districts,98 based on the experience in other countries.99 For example, about 104 BHUs in district Rahim Yar Khan in the Punjab province, were handed over to an NGO on a pilot basis in 2003. A government- commissioned evaluation of these BHUs by the World Bank (which is a strong advocate of contracting out delivery of health services to NGOs in fragile states), revealed that the handover of the facilities has increased efficiency with no additional cost implications.98 Encouraged by the results, around 3093 health facilities (including 2390 BHUs) are now being managed through public-private partnerships. In 2002, the WHO ranked Pakistan’s health care system number 122 among the 191 member countries surveyed—much behind its former territorial twin Bangladesh (rank: 88) and two neighbours Iran (93) and India (112). In a recent analysis of the health system in Pakistan, Nishtar97 likens the system problems to ‘choked pipes’. “A health system has to be functioning in order to deliver any service. When its pipes are choked nothing can be delivered and when the pipes are leaking, there is pilferage from the system” (personal communication). The health system is plagued by systemic challenges such as massive corruption, inequalities and lack of investment and leadership.97 Health systems are a key determinant of health. The way in which health systems in a country or its jurisdictions are designed, operated and maintained affects the health and wellbeing of its population. The WHO has identified six building blocks of a health system: governance, health financing, service delivery, human resources for health, health information systems, and pharmaceuticals and vaccines. The following review highlights where Pakistan is today with regard to each one of these.

2.4.1 Who is responsible for the provision of health care in Pakistan?

According to Pakistan's constitution, population health is a provincial subject. After the recent 18th Amendment to the Constitution, provincial health departments have become the main actors for both planning and implementing health programmes and service delivery within their respective jurisdictions. Constitutionally, health is not a human right in Pakistan. However, in 2008, Pakistan finally ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR) which recognizes “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”, which was adopted by the United Nations General Assembly on December 16, 1966, and which has been in force from January 3, 1976. However, the extent to which the country considers itself bound by the obligations of the treaty remains unclear as it has not made significant legislative change to this effect. It is also unclear if ratification will be translated into meaningful reforms in public health expenditure, which remains disappointingly low. The WHO recommends a minimum US$35-50 spending per person per year to provide basic, life-saving services. Pakistan is spending only US$ 23 per person per year of which the government spends only around $ 7 (30.4%). Public expenditure on health has more than doubled since 2000, but it continues to be lower than in India ($ 11), Iran ($ 118) and Sri Lanka ($ 32).72 This is also far lower than the average public expenditure on health in low-income countries ($ 11), lower middle income ($ 34), upper middle income ($ 269) and high income ($ 2699) countries. Much of the problem stems from the huge foreign debt service the country pays on external loans. In 2001, Pakistan was the only South Asian country to be declared a severely indebted country by the World Bank. External debt has increased from $40 billion in 1999 to $61.8 billion in 2012. The situation has further deteriorated in 2013 and 2014. Islam100 noted that Pakistan’s increasing debt burden and its worsening economic woes are “severely limiting” its ability to invest in health. Health is a provincial subject but the provinces are dependent on federal transfers of payments and their level of dependence has been increasing for health financing.100 There are three main modes of financing health care in the country: taxation, out- of-pocket payments (private expenditure on health) and donor contributions (Table 4). Out-of-pocket health expenditure is by far the most common mode of payment, accounting for over 82% of the private expenditure on health. Only about a quarter of the population has health insurance or other forms of cover from their employers. The rest pay for care

directly through out-of-pocket payments. External contributions account for about 3% of total expenditure on health.

Table 4 Pakistan’s expenditure on health in comparison with its neighbours and other countries in the region

Indicator

Pakistan Bangladesh India Iran Lanka Sri Total expenditure on health as % of gross domestic 2.7 3.4 4.1 6.4 4.2 product General government expenditure on health as % of 30.0 33.6 26.2 46.8 47.5 total expenditure on health Private expenditure on health as % of total expenditure 70.0 66.4 73.8 53.2 52.5 on health General government expenditure on health as % of 3.5 8.0 3.7 11.5 8.5 total government expenditure External resources for health as % of total expenditure 3.3 7.7 1.4 0.1 1.7 on health Social security expenditure on health as % of general 4.2 0 17.2 41.0 0.1 government expenditure on health Out-of-pocket expenditure as % of private expenditure 82.1 97.4 89.9 95.4 86.7 on health Private prepaid plans as % of private expenditure on 0.3 0 2.1 3.8 9.1 health Per capita total expenditure on health at average 23 15 40 253 68 exchange rate (US$) Per capita total expenditure on health (PPP int. $) 64 42 109 689 179 Per capita government expenditure on health at 7 5 11 118 32 average exchange rate (US$) Per capita government expenditure on health 19 14 29 322 85 (PPP int. $) Source: World Health Statistics 2010; World Health Organization

2.4.2 Service delivery

In Pakistan, health services are delivered by a mixed public and privately funded health care system, with most services provided by the private sector. Organisations involved in the provision of health services include the federal government, the provincial health departments, private sector healthcare providers, armed forces, non-governmental organisations and the employees’ social security institutions. Public funded health services remain severely overstretched by the unfinished agendas of infectious disease 23

and the growing burden of chronic illness compounded by the rapid emergence of chronic liver diseases. The public funded health care has around a dozen disease-specific programmes as well as a 3-tier network of services delivered at the primary, secondary, and tertiary levels (Table 5). The disease-specific programmes focus on blindness, malaria, HIV/AIDs, hepatitis, vaccine preventable diseases, and tuberculosis.

Table 5 The number of health care facilities in Pakistan Facility 2000 2004 2009 Secondary and tertiary hospitals 876 916 968 Beds 76,615 81,873 84,257 Rural Health Centers 531 552 572 Basic Health Unit/Sub Health Centers 5171 5301 5345 Dispensaries 4,635 4,582 4,813 MCH Centers 856 906 906 T.B. Clinic 274 289 293 Source: Federal Bureau of Statistics, Government of Pakistan

There are crosscutting programmes such as the national Lady Health Workers Programme that aims to provide basic health services at the doorstep and provide a link to emergency and referral care. Since its launch in 1994, the programme has expanded substantially with 130,000 LHWs across the country. Each LHW is supposed to cover a population of 1,000 (approximately 150 houses). The LHW Programme has been envisioned by the government as a key strategy for improving the health status of women and children in rural areas and in urban slums and now covers approximately half of the population. As mentioned earlier, the country has an extensive network of more than 12000 first-level care facilities (FLCFs), including dispensaries, basic health units, and rural health centres. However, many of these are non-functional. The rest are grossly underutilised and the quality of the services they provide is poor.97 The referral system between FLCFs and the next level of health care facilities centres is poor and not operational. Most of the conditions that were envisioned to be treated at the FLCFs end up in more than 950 secondary (Tehsil Headquarter Hospital & District Headquarter Hospital), or tertiary care centres—most of them affiliated with medical colleges and postgraduate medical institutes. The private health sector plays a major role in service delivery of health care throughout Pakistan. The 2008-2009 Pakistan Social & Living 24

Standards Measurement Survey provides nationally representative estimates on a number of health indicators including health care utilisation. The survey indicated that 71% of the population, when ill, consults a private health provider while only 18% go to public health facilities.101 This finding means that only one out of every 5-6 contacts that a Pakistani makes each year with health care providers involves public facilities. That most people, when sick, go to the private sector has been a consistent finding across studies in Pakistan and effective interventions to address this problem are long overdue. Poor geographic access, absenteeism of critical health care and inadequate supply of medicines in the public sector discourage people from accessing it. The private sector includes clinics, pharmacies, hospitals, laboratories and diagnostic facilities—often run by unqualified persons. This sector also includes non-allopathic health care providers and their practices such as hakeems and homeopaths and traditional providers and faith healers. Private practitioners often abuse the poorly regulated system. These include the use of unnecessary injections, most of which are administered in the private sector. A significant proportion of them are unsafe. Janjua and colleagues102,103 have estimated that around 1.5 billion injections are administered in the country of which around 90% are unnecessary. In the last two decades, the not-for-profit charitable sector has emerged as an important component of the country’s health care system, most notably in the field of prevention, cancer care and control of blindness. More than half of the eye care in the country is provided by NGOs. For example, a quarter of eye surgeries, especially cataract surgeries, are performed by the LRBT (Layton Rahmatulla Benevolent Trust), which has a large network of 18 hospitals and more than 50 community-based clinics across the country.

2.4.3 Health workforce

The ability of a country or its units to meet their health challenges depends largely on the skill, adequacy and distribution of its health workforce. In Pakistan, the doctor-population ratio is 1:1700-2000—compared to 1: 500 in developed countries and 1: 1000 recommended by WHO for LMICs.104 The target is likely to be achieved because the production of physicians has been a priority for successive governments. Moreover, there has been a substantial increase in the number of private medical colleges in the last 15 years.

There are no reliable data on the health workforce in Pakistan. Table 6 shows the number of health care workers in Pakistan as reported by the Federal Bureau of Statistics, Government of Pakistan. Talati and Pappas104 have estimated that in 2005, 74,000 physicians were practicing in Pakistan. Each year, 5,400 physicians are produced; 1,150 physicians emigrate and another 570 stop practicing. However, a major challenge has been the imbalances in their geographic distribution, skill-mix as well as their migration to affluent countries. Limited educational and recreational opportunities for self and children, insecurity (threats, robberies and kidnappings) and lack of peer interaction make it difficult for rural areas to recruit and retain physicians. Interference from community leaders and politicians is endemic. Measures to address geographic imbalances have included compulsory service in the rural area and other incentives, but have had limited success. The problem of a rural-urban imbalance in physician workforce remains unsolved.

Table 6 The number of health care workers in Pakistan

Cadre 2000 2005 2009 Doctors 92863 118140 139555 Dentists 4165 6743 9822 Midwives 22525 23897 26225 Nurses 37528 51270 69313 Source: Federal Bureau of Statistics, Government of Pakistan

The increasing incidence of violence against doctors based on ethnic and sectarian origins in several parts of the country has driven some to migrate from rural to urban and others from urban to affluent countries. In the last 2 decades scores of doctors have been killed in Karachi alone.105 It is unclear how many of the more than 30,000 Pakistani physicians who have emigrated abroad have done so because of the ongoing insecurity and despair in the country. Another worrying problem has been the low number of nurses, midwives and other health workers relative to population. Pakistan needs a minimum of 2.3 doctors, nurses and midwives per 1000 population to deliver essential maternal and child health services and reduce the number of maternal and child deaths, but it has only half this number—1.2 per 1000.106 There are more than 50,000 pharmacies nationwide but most of them lack pharmacists.

2.5 Eye health status of Pakistani population

Pakistan is one of the few LMICs to have a nationally representative evidence base on the eye health status of its population and it is among a small number of LMICs that have implemented a national plan for the prevention and control of vision impairment and blindness. This section, as well as the remainder of this chapter, reviews literature on the burden of vision impairment and the attention it has received from the government and non-governmental organisations. The Pakistan National Blindness and Visual Impairment Survey conducted during 2001-2003 showed that 0.9% (95% CI, 0.8%-1.0%) of the population was blind.107 Although the prevalence of blindness has apparently decreased from 1.9% (reported in 1990),108 the number of people living with blindness remains almost unchanged because the country’s population has increased substantially. In 2003, there were an estimated 1.25 million blind individuals of all ages in Pakistan, and because of aging, this number is projected to double by the year 2020 if the prevalence of blindness in adults does not change. The survey had three striking findings: women were 30% more likely to be blind or severely visually impaired than men; people who had at least primary education were 60% less likely to be blind or severely visually impaired than those with no education and the prevalence of blindness was highest in the least developed province of the country, Baluchistan. People living in Baluchistan, Sindh and Punjab were 70%, 50% and 30%

Table 7 Principal causes of blindness and vision impairment in Pakistan Presenting visual acuity in the better eye <6/12–6/18 <6/18–6/60 <6/60–3/60 <3/ 60 Cause % % % % Refractive error 70.2 42.7 6.9 2.7 Cataract 19.2 41.6 67.8 51.5 Uncorrected aphakia 1.5 3.1 5.3 8.6 Posterior capsule opacification 1.0 2.1 4.5 3.6 Glaucoma 0.7 1.7 2.4 7.1 Diabetic retinopathy 0.3 0.5 0.4 0.2 Central corneal scar 1.9 2.6 3.3 11.8 Phthisis/absent globe 0.1 0.1 0.4 2.7 Macular degeneration 0.5 1.0 2.0 2.1 Other 4.5 4.5 6.9 9.8 Source: Dineen B, Bourne RR, Jadoon Z, et al. Causes of blindness and vision impairment in Pakistan. The Pakistan national blindness and visual impairment survey. Br J Ophthalmol 2007; 91(8): 1005-10.

more likely to have SVI and blindness compared with their counterparts in Khyber Pakhtunkhwa. The survey also found that cataract was responsible for around half of blindness and two-thirds of severe vision impairment in Pakistan (Table 7) and that cataract blindness disproportionately affected socioeconomically disadvantaged and marginalised sections of the population, particularly women, rural dwellers, and those who were illiterate.56 A review of all publications56,64,107,109-114 derived from the same survey, using a gender lens, revealed evidence of systematic gender inequities with regard to detection and management of cataract in Pakistan which is a WHO priority country for the prevention and control of avoidable blindness. The prevalence of cataract blindness was 1.80% in women compared with 1.67% in men (P<0.001) which means that, in 2003, in Pakistan there were an estimated 120,000 more women than men (345,000 women vs. 225,000 men) blind due to cataract. Furthermore, this difference will double by the year 2020 if no action is taken to reduce this gap. The survey also noted gender inequalities with regard to the uptake of cataract surgical services and that, when women had cataract surgery, they were more likely to have poor outcomes.

2.6 Pakistan’s response to major eye health problems - A review of eye health system

As with the overall health care system in the country, the eye care system in Pakistan is also a mixed one (public and private)—with the majority of individuals with eye diseases treated by non-state providers (for profit as well as not for profit). Below is a historical overview of how this response was shaped. The first major state response to the burden of blindness and vision impairment was introduced in the era of military ruler General Zia ul-Haq. After the 1979 Soviet invasion of Afghanistan, large sums of US money flowed into Pakistan, which led to growth in the economy and health care infrastructure, as mentioned earlier. While he is blamed for having destroyed the political fabric of Pakistan and sowing the seed of religious extremism, General Zia took particular interest in the fight against disabilities, including blindness, because one of his daughters was disabled. In 1980, Dr. Hugh Taylor (now Professor of Indigenous Eye Health at the University of Melbourne, Melbourne, Australia) was commissioned by the WHO to visit Pakistan and review the country’s blindness situation. The former chairperson of the national eye policy-making body in Pakistan, Professor Daud Khan (personal communication)115 indicates that Taylor’s analysis

revealed a gross mismatch between the burden of blindness and available human resources. There were only 80 ophthalmologists for a population of 100 million. Taylor thought that the prevalence of blindness in the country was higher than 2% with cataract being the major cause of blindness, while the cataract surgical output was too low to address this burden. He found that more than two thirds (45 out of 64) of the districts in the country were without an ophthalmologist and static eye care services. There was an insufficient number of ophthalmologists with no paramedic cadre to assist them. The report succeeded in sensitizing a key professional group for advocacy. Further, in response to Taylor’s report, the Ministry of Health under General Zia appointed a National Cataract Committee, which later (in 1988) was changed to the National Eye Camp Planning Committee. Eye camps were the main strategy to reduce the burden of cataract blindness in south Asia at the time.116 A leading eye charity, Layton Rahmatulla Benevolent Trust (LRBT) that now performs a quarter of all cataract surgeries in Pakistan was established in 1984. In 1987, the Government of Pakistan with the help of the WHO conducted a national survey of blindness. The study (1988–1990) led by Professor Saleh Memon revealed that the national prevalence of blindness for individuals of all ages was 1.78%.108 Two thirds of blindness was due to age-related cataract. The blindness prevalence (%) in the provinces of Sindh, Baluchistan, Khyber Pakhtunkhwa (formerly NWFP), and Punjab were 1.14, 2.69, 1.00, and 2.17, respectively. The survey consisted of sub-surveys in different regions of the country and had several methodological limitations. However, it provided necessary statistics for advocacy. A National Committee for Prevention of Blindness was formed in 1991, which produced the five-year National Plan for the Prevention of Blindness 1994–1998, a policy document that outlined the strategies needed to address blindness in the country. Its focus was on cataract blindness. The establishment of a small centre for Community Ophthalmology at the Lady Reading Hospital, Peshawar in 1987—which a few years later evolved into Pakistan Institute of Community Ophthalmology (PICO)—was perhaps the most vital factor in the development of a national eye care plan. Spearheaded by Professor Mohammad Daud Khan, the Institute promoted the idea of decentralizing eye care services with the districts serving as the unit of planning and management of eye care programs. In 1996-97, PICO—in collaboration with Sightsavers (a UK-based international NGO)— launched a pilot project in the Bannu district of Khyber Pakhtunkhwa in response to a rapid assessment that had found that despite having two ophthalmologists, the eye unit in

the District Headquarter (DHQ) Hospital Bannu was performing only 150 cataract operations per year. Lack of eye care paramedics, a separate operating theatre and lack of adequate inpatient beds as well as equipment were noted as reasons for the poor surgical output. The project provided eye equipment, trained the ophthalmologists in modern surgery (intraocular lens implantation), and provided paramedics. A several-fold increase in the surgical output was noted in the subsequent two years. Meanwhile, PICO developed and launched a programme to train key cadres of eye care workers such as eye technicians, and community ophthalmologists who later assumed leadership positions in the provinces. In 1999, PICO and the UK-based charity Sightsavers, encouraged by this increase in surgical output in the eye unit in Bannu, launched similar projects in all seven agencies of Federally Administered Tribal Areas (FATA) and three districts in Khyber Pakhtunkhwa. In the meantime, Fred Hollows Foundation, an Australian NGO, began to support 20 more districts (5 in each province). Other international NGOs, such as the CBM and Dark and Light, also adopted some of the districts. Under this strategy, a total of 60 districts were upgraded between 2000 and 2005. Funding came from these and several other NGOs. However, there were concerns among these donors that the district eye care programme they had initiated lacked ownership by the government. In 2005, the government of Pakistan launched a Rs. 2.8 billion (US $50 million) 5-year National Plan for the Prevention and Control of Blindness 2005-10 (Table 8). This was the third five-year plan for prevention of blindness and the first in which the government had allocated a substantial amount of money for prevention and control of blindness. The government upgraded 63 districts in the country under the new plan.

2.6.1 Eye health governance

Good governance is fundamental to good decision-making and meeting national and global health targets. As mentioned earlier, after the 18th Constitutional Amendment of 2010, provincial health departments became the main actors for both planning and implementation of health programmes and service delivery within their respective jurisdictions. Before this amendment, the National Eye Health Committee (formerly the National Committee for Prevention of Blindness), established in 1991, was the highest policy-making and decision-making body on matters related to eye health. This committee was more active than most other health committees and task forces. It made 3 national

plans for prevention of blindness: the first national plan 1994–98, the second national plan 1999–2003 and third national plan 2005–10 (Table 8). The Committee, comprising representatives of the provincial government, professional bodies, leading eye care organisations (both public and not-for-profit) and international donors, was mainly focused on strengthening the state-run eye care system, especially upgrading and refurbishing the eye units in the tertiary and secondary hospitals, providing equipment and producing human resource to staff these services.

2.6.2 Eye care service delivery

As mentioned earlier, cataract accounts for half of the blindness and two-thirds of vision impairment in Pakistan and has been the focus of blindness control efforts. Most

Table 8 Targets of the national programme for Prevention & Control of Blindness for 2005- 2010 Targets Targets achieved Indicators (2005-2010) (2005-2008) Upgrading of Tertiary (Teaching) Hospitals 19 13 Upgrading of District Headquarters Hospitals 63 45 Upgrading of Tehsil Headquarters Hospitals 147 00 Provision of YAG Laser to District Headquarters 111 72 Hospitals Provision of Green Argon Laser to District 111 45 Headquarters Hospitals Training of Lady Health Workers in Primary Eye Care 50000 5000 public as well as not-for-profit private eye care service delivery in Pakistan is geared to increasing the output of cataract surgery in the country. A mapping exercise of cataract services undertaken in 2000 revealed that 55% of over 310,752 cataract operations in the country each year were being performed by the non-government sector followed by the government sector (39%) and armed force services (6%).117 Since then, eye care services in the country have substantially expanded.116 The number of surgeries is believed to have more than doubled. In 2014, LRBT alone performed a total of 168 978 cataract surgeries, approximately one quarter to one third of all cataract surgeries performed in Pakistan, and also provided more than 2 million outpatient consultations. The services offered by NGOs are subsidised, or totally free, as in the case of LRBT which spends more than US $ 5 million a year. While the government has played a major role in human resource development in the country, its 31

role in service delivery has been much more limited. Services in the public sector suffer from high out-of-pocket expenditures related to purchase of medicines and transport, delays and inefficient use of resources. Almost all eye doctors and other workers in the public sector supplement their incomes with private practice, which is largely unregulated and market-driven. The diversion of patients from state hospitals to private practice constitutes a conflict of interest for the doctors and other workers. Qureshi and colleagues118 examined the annual number of glaucoma operations and admissions in the public sector tertiary care hospitals in Pakistan. They found that only 1,407 glaucoma-related operations were being performed in the selected 13 state- run tertiary centres. The median number of operations performed was 112, ranging from 17 to 206. The output was independent of the number of ophthalmologist in each centre.

2.6.3 Eye health workforce

Table 9 shows a snapshot of the number of eye care workers in Pakistan in 2009. The government, supported by both national and international non-governmental organisations, has provided stewardship for the development of human resources in Pakistan. There were 500 ophthalmologists in the country in 1993.116 This number increased to around 2,000 in 2009. In addition, most of the district ophthalmologists in each of the four provinces have received microsurgery training. Imbalance in the distribution of health workers contributes to inequities in health services delivery and differentials in health outcome. In Pakistan two-thirds of the population live in rural areas, but most of the eye care workforce, especially ophthalmologists, are based in large cities notably Karachi, Lahore, Rawalpindi and Peshawar. While Baluchistan has a very high burden of blindness, only a small number of ophthalmologists and allied human resources work there – a reflection of the “inverse care law”.119 In 2009, there were at least six centers accredited for the training of ophthalmic technicians and refractionists and these have played a major role in training and supporting these important cadres. A Masters-level course in community ophthalmology has been in operation in Peshawar since 1998 to produce eye care managers. It has graduated more than a hundred community ophthalmologists but it is unclear what proportion of them have been effectively utilised. Reliable data on the number and

distribution of ophthalmologists and allied workers, the effect of outmigration, deployment and details of their work environments are lacking.

Table 9 Eye workforce in Pakistan by cadre*

Eye health workforce Number of Total Total Total number accredited annual available in actively training output the country deployed in centres service General ophthalmologist-FCPS, MS 30 30 500 400 or equivalent General ophthalmologist–MCPS, 30 30 1 500 1 500 DOMS or equivalent Community ophthalmologist 2 15 89 – Optometrist 5 30 67 10 Refractionist 5 80 319 40 Orthoptist 4 15 40 10 Ophthalmic technologist 4 15 27 12 Ophthalmic nurse 2 20 48 21 Ophthalmic technician 6 100 1100 65 Lady health worker (LHW) 4 20 000 90 000 90 000 * Cadre (minimum accredited training): General ophthalmologist -FCPS, MS or equivalent (4 years), general ophthalmologist –MCPS, DOMS or equivalent (2 years), community ophthalmologist (1 year), optometrist (4 years), refractionist (2 years), Orthoptist (4 years), ophthalmic technologist (4 years), Ophthalmic nurse (1 year after general nursing), ophthalmic technician (1 year), lady health worker (2 days of training in eye health as part of LHW training programme). Source: Khan A, Khan N, Bile K, Awan H. Creating synergies for health systems strengthening through partnerships in Pakistan–a case study of the national eye health programme. Eastern Mediterranean Health Journal 2010;16: S 61-68.116

2.7 Summary points of Chapter 2

. Pakistan (population: 179 million) is ranked very low in the global Human Development Index (146th among 178 countries). Wellbeing and access to resources are uneven and influenced by socioeconomic status, gender, ethnicity and geographic location. In the 67-year history of Pakistan, the country has suffered poor governance, massive corruption, and several large-scale natural and man-made disasters (earthquakes, floods and violent conflicts). At least a quarter of its population lives on less than US $1.25 a day. The overall health status of the Pakistani population is low. It is among the 5 countries with the highest absolute number of maternal and child deaths each year and is unlikely to achieve the 33

global targets for improvements in child and maternal health and other indicators. The unfinished agenda of infectious diseases, the growing burden of non- communicable disease and injuries, and the emergence of hepatitis B and C characterise the health status of the country. . Pakistan’s health care system is weak and ranked amongst the lowest in the world (number 122 of 191 countries). Public per capita spending on health (only $7) is lower than that of India, Iran and Sri Lanka and is well below WHO-recommended levels. Much of the curative health services are provided by the private sector, financed mostly through out-of-pocket expenditure. The country has established a large network of health facilities, but these remain under-funded, underutilised, of low quality and at times corrupt. The private sector is large, of varying quality and largely unregulated. The majority of its workers have never had any formal training. . There are an estimated 1.25 million blind people in Pakistan. There are at least 137 blind women for every 100 blind men. Rural dwellers and people with no formal school-based education are also disproportionately affected. Cataract accounts for half of the blindness and two-thirds of vision impairment in the country and is thus the focus of attention. The country has made substantial progress in expanding eye care services, but their suboptimal quality and underutilisation as well as low accessibility by marginalised populations remain major challenges.

Chapter 3 WHY STUDY THE EYE HEALTH OF FISHING POPULATIONS?

This brief chapter reviews available literature on the eye health of fishing populations worldwide. It begins with a discussion of the worldwide fishery resources and their distribution and then moves on to the major vulnerabilities faced by fishing populations generally, such as poor socioeconomic status, unpredictable livelihood, difficult and stressful work conditions and the high rates of injuries and occupational hazards. The chapter then reviews literature on the burden of eye problems among fishing populations explains why so little research has focused on these communities, especially in LMICs where most of them live, and why it is particularly needed to look at the vision loss in the fishing population.

3.1 The state of worldwide fishery resources

Fishing is an important source of food and livelihood for millions of socio-economically disadvantaged people globally. In 2012, the United Nations’ Food & Agriculture Organization (FAO)120 estimated that in 2010, 54.8 million people worldwide (mostly in China, Indonesia, Thailand, India, Bangladesh, Pakistan and other Asian countries) were directly engaged in fishing or fish farming (Table 10). Another 85 million people worked in related sectors such as fish processing (cleaning, filleting, icing, packing, canning, freezing, smoking, salting, cooking, pickling, drying or preparing fish for market any other way), distribution and marketing. More than 90% of the world's 38.2 million fishers (an individual, generally male, who takes part in offshore or deep-sea fishing conducted from a fishing vessel, a floating or fixed platform, or from shore), almost all of them from LMICs, are employed (full- or part-time) in small-scale fisheries, which provide the majority of fish for human consumption in LMICs. Operating along the coastal areas, these fisheries play a crucial role in securing the right to food for millions of people,121 and are regarded as pro-poor as they provide livelihood to a large number of people, including women.121-123 Nearly half of those employed are women who are mainly concentrated in the pre-and post-harvest sectors, such as making and repairing nets, fish processing and marketing.121 Fish and fishery products represent a valuable source of protein and essential micronutrients. Globally, fish contributes about 16 per cent of animal protein intake. However, in many LMICs, fish accounts for one-quarter to as much as half of animal

protein. In 2010, the global per capita fish consumption was 18.4 kg compared with 11.5 kg, 12.5 kg, and 14.4 kg in the 1970s, 1980s, and 1990s, respectively. Most of this steady increase has been driven by an increasing awareness of the dietary importance of both fish and fishery products. According to FAO, in 2010 capture fisheries and fish farming supplied the world with about 148 million tonnes of fish (with a total value of US$217.5 billion), of which about 128 million tonnes was used as food for people.120

Table 10 The number of world fishers and fish farmers by region in 2010

Population Fishers* Fish farmers† Both Region Number Number (%) Number (%) Number (%) Africa 1,030,000,000 3805000 [0.37] 150,000 [0.01] 3955000 [0.38] Asia 4,157,000,000 31779000 [0.76] 16078000 [0.39] 47857000 [1.15] Europe 739,000,000 549000 [0.07] 85000 [0.01] 634000 [0.09] Latin 585,000,000 1726000 [0.30] 248000 [0.04] 1974000 [0.34] America and the Caribbean North 344,000,000 338000 [0.10] 4000 [0.001] 342000 [0.10] America Oceania 37,000,000 70000 [0.19] 6000 [0.02] 76000 [0.21] World 6,892,000,000 38267000 [0.56] 16571000 [0.24] 54838000 [0.80] *A gender-neutral name for a person (male or female) taking part in fishing conducted from a fishing vessel, a floating or fixed platform, or from shore. Generally, fishers are men involved in offshore and deep-sea fisheries. In some regions, women fish inshore from small boats or collect shellfish and seaweed. Does not include fish processors or traders. † An individual (male or female) participating in the farming of aquatic organisms such as fish, crustaceans, molluscs and aquatic plants. Also known as aquaculture, it involves cultivating freshwater and saltwater populations under controlled conditions, and can be contrasted with commercial fishing, which is the harvesting of wild fish. Source: The State of World Fisheries and Aquaculture 2012 (FAO, 2012).

3.2 Fishing communities: poverty, vulnerability, and marginalisation

In purely income terms, small-scale fishers may often compare favourably with small-scale farmers or agricultural labourers. But in terms of educational, health and nutritional status, participation in political decision-making, and vulnerability, small-scale fishers and fishing communities often appear to rank lowest in society. One should hasten to add, however, that there are considerable variations in the economic and social status as well as political influence of small-scale 36

fishers across countries and regions [Food and Agriculture Organization, 2000].124

Marine fishing communities represent one of the most marginalised and vulnerable population groups in the world.13,125 Factors behind marginalisation and vulnerability of these communities are detailed in Table 11. They are frequently characterised by disproportionate levels of poverty and poor living conditions (poor housing, overcrowding, poor access to safe water, lack of hygiene, lack of sanitation), low levels of education and segregation—although the size of these problems varies from place to place.126 127 A large number of small fishing communities (rural as well as semi-urban) are established along the coast and islands, facing environmental challenges, such as soil erosion, sea level rise, flooding, and urban expansion. This is compounded by the increasing pollution of seawater by municipal sewage, agricultural chemicals, industrial waste and oil spills, all of which have also resulted in depletion of fish stock. A major existential threat to traditional fishing communities has been 'ocean-grabbing' and overfishing by foreign industrial fleets, which have caused substantial depletion of fish stocks and degradation of marine environments.121 The destruction caused by large-scale industrial ‘bottom trawling’ has been of particular concern because it not only destroys sea-bed habitats but also results in huge levels of bycatch. Fishers generally live in remote and isolated communities and locations, which are often overlooked by development programmes and services delivery, including health, education, housing, water supply, sanitation and road building. Moreover, these communities are generally “poorly organised and politically voiceless”, have low social status and an extremely limited role in decision making.13 124,125 In 1974, the FAO emphasised that ‘‘the people engaged in these activities and their families continue, with few exceptions, to live at the margin of subsistence and human dignity’’.128 Four decades later, many of the fisherfolk still live in poverty, despite the high demand for sea products and despite development advances in most countries in the world. Some authors argue that fishing communities are not necessarily the poorest of the poor in monetary terms, but may be amongst the most vulnerable and marginalised groups because of their particularly high exposure to natural and occupational hazards, economic shocks and weak coping resources.129,130 Reliable data on the global or regional

incidence of fatal and non-fatal injuries in the fishing industry is lacking because, with the exception of a limited number of developed countries, there is no surveillance system in

Table 11 Factors contributing to vulnerability and poverty among fishing communities

Geopolitical and Regional or international conflicts, ocean grabbing or aggressive legal environment industrial fishing by foreign fleets, climate change, political and legal marginalisation.

Individual High rates of alcohol and tobacco use, unprotected sex, lack of behaviours and protective safety equipment, high rate of population growth. lifestyle factors

Social environment Low income, unpredictable catch, seasonal nature of commercial fishing, lack of income diversification opportunities, lack of alternative employment during off-season, low catch rates mainly attributable to overfishing by large foreign fishing vessels, high cost of fishing because of higher prices of diesel and equipment and high taxes, high economic dependency on earning members of the household, lack of direct access to markets, lack of education. Working Strenuous labour, extended work hours (sometimes weeks at a stretch), environment slippery and unstable work surfaces, exposure to noise and vibration, exposure to dangerous equipment, extremes of temperature and weather, lack of appropriate technology. Living conditions Spatial segregation, poor housing, overcrowding, indoor air pollution, water shortages; unsafe drinking water, inadequate sanitation and excreta disposal, poor drainage, inadequate solid waste removal.

Health and health High incidence of both fatal and non-fatal injuries, tuberculosis, systems HIV/AIDs, and skin diseases. Remoteness from onshore/near shore health facilities; limited and difficult access to health care services centres especially if the need arises in adverse weather and at a distance from onshore facilities.

place to record these. The problem is particularly severe in LMICs where most of the fishermen operate. The often-quoted statistic that worldwide, 24,000 fatal and 24 million non-fatal injuries occur annually in the fishing industry was released by the International Labour Organization in 1999.131 Recent surveillance data from developed countries such as the USA, UK, Denmark and Australia show that commercial fishing continues to be the most dangerous occupation.2-11 For example, in the United States, the average annual fatality rate is 31 times higher among fishermen than for all U.S. workers (24 deaths per 100,000 workers vs. 4 per 100,000 workers).132 Such disparity has also been widespread

in other developed countries, especially the UK133 where the fatal ‘accident’ rate among fishermen is 115 times greater than that of the general workforce. Factors contributing to occupational injuries among fishermen include high work demands (e.g. strenuous labour, long work hours, fatigue), hazardous working conditions (e.g., slippery and unstable work surfaces), failure to use safety practices and equipment, and boat sinking or capsizing due to leaking or giant waves. Access to healthcare is often extremely limited, often complicated by the remoteness of the fishing communities from the regional or sub-regional health centres. Access to health services is a particular challenge if the need for medical care arises offshore or in adverse weather. Fishing populations are particularly vulnerable to ill health due to lifestyle factors, particularly in relation to stress and mobility such as alcohol and tobacco use, and sexual practices. For example, a 2005 review of surveys134 conducted in the fishing populations in 10 LMICs identified a 4 to 14 times higher prevalence of HIV infection among fishermen or fishing communities than the national average. In fact, fishing communities were among the first hard hit populations by the HIV/AIDS epidemic.135 Factors enhancing vulnerability to HIV include the highly mobile nature of male fishers, long periods away from home and family, occupational segregation of young workers, stressful working environment, alcohol use, easy access to daily cash income and the easy availability of commercial sex in many fishing ports.125,135-138 Once infected with HIV, adherence to antiretroviral therapy and associated interventions can be a challenge because of the mobile nature of this population.139 Tobacco use is another major public health challenge. Although the availability of data on the extent of tobacco use is extremely limited, published data indicate a very high prevalence of tobacco use in the fishing communities. For example, a large survey,140 conducted 4 decades ago in the 20 coastal villages in Srikakulam, India’s most northern coastal district in Andhra Pradesh province (n= 10,169 people aged ≥ 15 years) reported 74.2% had one or more smoking and chewing habits.

3.3 Eye health of fishing populations: Why has so little medical research been focused on it?

We conducted a systematic search of the published scientific literature on the status of eye health of fishermen or fishing communities (Box 1 and Figure 4). Articles were included if

they reported the prevalence or incidence of self-reported eye problems or physician- diagnosed vision loss and its causes among fishermen, fishery workers or fishing communities. The search yielded 142 records. Two additional records were identified through other sources. A total of 5 articles describing 4 different studies141-145 were deemed relevant and are detailed in Table 12 and in the text below.

Box 1 Search strategy We conducted a literature search of multiple databases including MEDLINE (1966-2012), EMBASE (1980-2012), CINAHL (1983-2012), Science Citation Index (1945-2012) and Social Sciences Citation Index (1956-2012). A combination of Medical Subject Headings (MeSH) and text words representing eye health (i.e. eye diseases, eye problems, cataract, eye trauma, visual impairment, and blindness), fishing populations (fishers, fishermen and fishing communities) and measures of disease frequency (incidence, prevalence) were used to generate relevant citations. A database was constructed in EndNote. The reference lists of all known primary and review articles were examined to identify additional citations.

There was only one study in the literature that objectively assessed the burden and causes of vision impairment and blindness in fishing communities.141 In that cross- sectional study, Marmamula and colleagues surveyed 1560 persons, aged ≥ 40 years, in fishing communities in the Prakasam district of Andhra Pradesh in India, and found that 22.8% (95% CI, 20.7-24.9) of them had bilateral moderate vision impairment and another 7.1% (95% CI, 5.8 - 8.4) had bilateral severe vision impairment or blindness. Cataract accounted for 77.2% cases of MVI and 92.8% cases of SVI/blindness.

We identified three cross-sectional surveys 143-145 that examined self-reported eye problems besides other health problems among fishery workers and fishermen. Percin and colleagues143 interviewed 1166 small-scale fishermen (mean age ± SD: 46 ± 12 years) working along the Aegean Sea coast in Turkey and found that 471 (40.4%) of them had an eye problem (one attended to by a physician in the last one year). This concern was second only to musculoskeletal problems (84.4%). While 85% of fishermen reported eye problems due to light reflection off the sea surface, only 34% declared the use of sunglasses.143 In the second survey,144 Zytoon et al interviewed 686 fishermen in El-Maaddiya fishing port, Egypt during 2008. The prevalence of self-reported eye problems was 80.6% (95% CI, 77.5–83.5). The main self-perceived causes of eye problems were solar radiation 40

(75.0%), sea water (66.0%), wind (44.1%), and the need to focus on sea surface (39.2%). In the third study, Novalbos and colleagues 145 studied 247 fishery workers (mean age ± SD: 40.3 ± 11.5 years) employed in 19 of the 23 ports in Andalusia, Spain. They found a prevalence of 38.1% of self-reported eye problems.

142 records identified 2 additional record identified n o i through database searching through other sources t a c i f i t n e d I 126 records after duplicates removed g n i

n 96 excluded because not e 126 records screened e

r relevant to topic c S y t i l i

b 25 excluded because did i 30 full-text articles assessed g i

l not satisfy inclusion

E for eligibility criteria d e d

u 5 articles provided relevant data l c

n and included in the synthesis I

Figure 4 Flow diagram for selection of studies

It was disappointing to note that so little research has been carried out on this subject, globally, to date. Even in developed countries, there has been a failure to provide such information. Most of these populations live in LMICs where, directly or indirectly, the livelihood of more than 500 million people depends on fisheries and aquaculture. One reason why so little is known about the eye health is the hard-to-reach nature of the fishermen and other members of this community.11 A particular challenge has been the remoteness of areas inhabited by fishing communities from the regional or sub-regional urban centres. Moreover, fishermen often spend long periods of time on the sea. Their

mobile and self-employed nature makes it extremely difficult to trace and include them in research studies as does their dynamic work schedule which is susceptible to changes due to weather, catch and a number of other factors.

Table 12 Key findings of the included studies in systematic review of status of eye health among fishing communities Study identifier Population Key findings Marmamula 1560 persons ≥ 40 years Prevalence of MVI†: 22.8% (95% CI, 20.7- (2011, of age in fishing 24.9) 2012)*141,142 communities in Prakasam Prevalence of SVI/blindness†: 7.1% (95% CI, district, Andhra Pradesh, 5.8 - 8.4). India Leading causes of MVI: Cataract (77.2%) and uncorrected refractive error (21.4%), surgery related complications (1.4%) Leading causes of SVI/blindness: Cataract (92.8%), surgery related complications (4.5%), and uncorrected refractive error (0.9%) Percin (2012)143 1166 small-scale Prevalence of self-reported eye problems fishermen (mean age ± (one attended to by a physician in the last SD: 46 year ± 12 years) one year): 40.4% working along the Aegean Sea coast in 76 fishing ports in Turkey Zytoon (2012)144 686 fishermen in El- Prevalence of self-reported eye problems: Maaddiya fishing port, 80.6% (95% CI, 77.5–83.5). Egypt. Self-perceived causes of eye problems: Sun radiation (75.0%), sea water (66.0%), wind (44.1%), eye focus on sea surface (39.2%), night work (24.6%), jelly fish (15.4%), net shaking (14.6%), and fuel combustion exhaust (10.7%)

Novalbos 247 fishery workers Prevalence of self-reported eye problems: (2008)145 (mean age ± SD: 40.3 ± 38.1% 11.5 years) employed in 19 of the 23 ports in Andalusia, Spain. *Values obtained by personal communication with the authors. † MVI = moderate vision impairment SVI = moderate vision impairment

One reason why so little is known about the eye health is the hard-to-reach nature of the fishermen and other members of this community.11 A particular challenge has been

the remoteness of areas inhabited by fishing communities from the regional or sub- regional urban centres. Moreover, fishermen often spend long periods of time on the sea. Their mobile and self-employed nature makes it extremely difficult to trace and include them in research studies as does their dynamic work schedule which is susceptible to changes due to weather, catch and a number of other factors. Women in these populations are difficult to reach. A sizeable proportion of them, in addition to taking major responsibility for housekeeping and childcare, work in fish processing or travel daily to more affluent neighbourhoods to work as housemaids and thus remain away from home for many hours. As a result of these barriers, epidemiological research on fishing communities can be both labour-and capital-intensive, requiring careful planning and coordinated effort and time.11,146 The problem is also related to the general lack of epidemiological research in LMICs, where most of the fishing populations reside and where marginalised populations, those most at risk from ill-health, are often overlooked by health researchers, academia, and health planners and funding agencies.

3.4 Why it is particularly needed to look at vision loss in the fishing population?

Pakistan has a sizable population of marine fishing communities, mostly living along its 1050 km Arabian Sea coastline. Fishing is a major source of income, employment, and food for these communities which often have low literacy rates, and are very poor and isolated, suffering from government neglect and the uncertainties associated with weather and catch.13 A number of studies on vision impairment and blindness have been conducted in the older adults in the general population in Pakistan, but no study is available among the fishing population thus far.58,65,66,107 Therefore, it is particularly important to study this population in detail, especially with regard to the burden of vision loss, access to eye care services, user experiences, and outcomes of cataract surgery.

3.5 Summary points of Chapter 3

. Small-scale fishing communities represent some of the most vulnerable and marginalised groups in LMICs, yet they have been largely neglected in health research, including eye health epidemiologic investigations. . A systematic review of available literature on the eye health status of fishing communities in both developing and developed countries showed only one

population-based study that has objectively examined the prevalence of vision impairment and blindness in these communities. . One reason why so little is known about their eye health and other health outcomes is the hard-to-reach nature of these communities. A particular challenge has been the remoteness of areas inhabited by fishing communities from the regional or sub-regional urban centres. Moreover, fishermen often spend long periods of time at sea. Their mobile and self-employed nature makes it extremely difficult to trace and include them in research studies. A sizeable proportion of women in these populations, in addition to taking major responsibility for housekeeping and childcare, work in fish processing or domestic work. Most of the fishing populations live in LMICs where research is generally lacking and where marginalised populations, those most at risk of ill health, are often overlooked in health care and research.

Chapter 4 TOWARDS A RIGHTS-BASED ANALYSIS OF EYE HEALTH

This chapter summarises the main existing approaches to reducing the worldwide burden of cataract blindness and vision impairment, with a special focus on Pakistan. It then explains what factors influence the framing of these approaches, identifies some of their limitations and discusses how a rights-based approach can add value to need-based approaches and to the strengthening of health systems. This chapter examines the relationship between eye health and human rights. It identifies human rights that are of particular relevance to eye health and explains the basis on which eye health—including availability of effective and accessible cataract detection and surgical services—can be affirmed as a human right. The chapter shows how the failure to put human rights into practice through development policies and programmes make populations more vulnerable to vision impairment, blindness and other serious eye conditions; and how the realisation of certain human rights is hampered by the burden of these conditions. Particular attention is devoted to vision impairment and blindness due to age-related cataract because it is responsible for half of the blindness in the world and can be effectively treated with surgery. The last section identifies some of the human rights- based approaches that can be used to highlight eye health problems and also proposes a conceptual framework on which to examine the problem of cataract blindness and vision impairment in a given population.

4.1 Existing approaches to reduce cataract blindness

Prevention and control of blindness and vision impairment in Pakistan is primarily the responsibility of the provinces. Each province has a mix of public, private (for-profit) and not-for-profit providers.97 Both not-for-profit and private sectors have grown rapidly but are largely unregulated without any significant governmental oversight and with varying degrees of quality and price. A quarter of all cataract surgeries in the country are performed by LRBT, all free of charge. The charity has a total of 18 eye hospitals across the country.147 Generally, public eye care is provided as a component of health care that is delivered through a 3-tier (primary, secondary, and tertiary) service network.97

Cataract accounts for nearly half of the blindness and two-thirds of vision impairment in the country,110 and thus is the main focus of control efforts.116 Cataract- related vision loss is mainly addressed by strengthening existing cataract surgical services in the public secondary hospitals (district or sub-district) or establishing new ones in a step-by-step manner. Even though there has been a substantial increase in the absolute number of public sector secondary eye care units across the country in the last one and a half decades – with significantly better outputs in some provinces or geographic areas than in others due to differences in security situation, political will, staff capacity, population-density or other factors,116 these are still insufficient to adequately address the eye care needs of the country (Table 13). Moreover, eye care services are still not uniformly distributed across population groups. Success is often counted in terms of inputs (such as establishment and upgrading of eye units, and distribution of materials, supplies, and equipment), as well as outputs such as the number of cataract surgeries performed in the country and number of outpatient visits, as illustrated in Table 13.116 A major problem with such approaches is the assumption that providing eye care facilities, supplies and human resources will automatically improve access to eye care and result in better eye health. Where eye care services have been established, it is unclear how well these function, how well coordinated they are, and whether all those who need such services can access them.

Table 13 The main inputs and outputs of the national eye care plan in Pakistan

Number of Eye outpatients seen in Eye surgeries performed in Facilities upgraded district eye units upgraded district eye units Upgraded 2006 2007 2008 2006 2007 2008 Federal 2 19702 40971 18576 7191 934 1610 Punjab 34 45461 132917 259385 1584 9757 13898 Sindh 14 91095 133890 263971 1072 4349 16024 Khyber 22 68192 87043 146440 3448 8839 8706 Pakhtunkhwa Balochistan 11 31600 37309 44585 6079 5617 7145 Northern Areas 2 2055 2122 4440 179 187 351 Azad Jammu 3 21081 22495 41151 498 1047 3148 and Kashmir Total 88 279186 456747 778548 13579 31730 50882 Source: Khan A, Khan N, Bile K, Awan H. Creating synergies for health systems strengthening through partnerships in Pakistan–a case study of the national eye health programme. Eastern Mediterranean Health Journal 2010; 16: S 61-8.

There is good evidence that many people with cataract-related blindness or severe vision impairment across the country do not come forward for surgery because they are unaware that they have cataract or that the disease is treatable.56,58,65,66 Yet, the country has not yet instituted an effective nationwide plan for timely detection and treatment, and many who are blind or have severe vision impairment due to cataract continue to die without their sight being restored, as is the case in other South Asian countries.148

As mentioned earlier, eye care services in Pakistan are provided by a mix of public and private institutions— both for and not-for-profit.97 Lack of coordination among the three providers has resulted in duplication and overlap of services in some regions alongside neglect of others. There are marked disparities in the burden of vision loss by gender and area of residence.107

The Pakistan National Blindness and Visual Impairment Survey56 revealed that the national burden of cataract blindness was mainly concentrated among women, rural dwellers, illiterate people, those living in Punjab and socioeconomically disadvantaged populations. Of the estimated 570,000 adults who were blind from cataract in 2003, 345,000 (60.5%) were women. Without targeted programmes, these numbers will increase to 1,210,000 by the year 2020. Of these, 732,368 will be women. It is unclear if the existing approaches to cataract-related vision loss are effectively addressing these disparities. Pakistan's health system is crippled by chronically low investment in health. For example, in 2008, the total health expenditure was 22 US$ per capita of which the government’s contribution was only 32.3% or 7 US$ per capita. Household out-of-pocket expenditure for health remains catastrophic, constituting more than half of the total health expenditure and 79.4% of the private expenditure of health.72 Out-of-pocket expenses associated with cataract surgery include, but are not limited to, cost for consultation, operation fee, transportation, accommodation, food, medications, intraocular lens, diagnostic tests and lost income. In the context of cataract blindness, such high expenditure can mean that many, particularly those socioeconomically disadvantaged who are blind or have severe vision impairment due to cataract, do not seek care or delay doing so. Cataract if left untreated may result in permanent vision impairment from glaucoma and other complications. Therefore, timely detection and treatment is very important. 47

Part of this problem results from the dual jobs held by almost all public sector health professionals, including ophthalmologists and allied eye care workers. It has been argued that this is associated with the misuse of public resources for private gains, resulting in low quality and poor output of public services.97 Overall, the quality of cataract surgery in the country is far below WHO’s standards. The Pakistan National Blindness and Visual Impairment Survey56 evaluated visual outcome of cataract in a nationally representative sample of 1788 eyes that had undergone cataract surgery in public, and not-for profit and for profit private sectors. The survey found that only 29.5% of the operated eyes had good outcome whereas a disappointingly 35.3% and 34.3% had borderline and poor outcomes, respectively. Visual outcomes with best-corrected vision/pin-hole were assessed in 1721 operated eyes. But even after correction, the outcomes were far below WHO standards—52%, 28.6% and 19.4%—and this has received minimal attention by the national eye care planners. The next section introduces human rights are and the value they can add to existing need-based approaches.

4.2 What are human rights and how did they emerge?

Before discussing modern human rights, I present a brief discussion of how they emerged.

4.2.1 How did modern human rights emerge?

The modern human rights framework emerged only 6 decades ago as a response to the events of the Second World War, in particular, the Nazi war crimes. In the Nuremberg War Crimes Trials (1945-1946), many Nazis were prosecuted under the then novel charge of crimes against humanity.149 This marked a sharp turnaround from the 19th and early 20th centuries when the world’s major powers showed no significant response to large-scale human rights violations. As Donnelly150 elaborates:

Traditional international practice… lacked even the language with which to condemn the horrors of the Holocaust. Realist diplomacy could find no material national interest that was threatened. In fact, while German realists might have decried the diversion of strategic resources to the death camps, Allied realists could, with theoretical consistency, only see it as politically fortunate. Traditional international law was as much at a loss: massacring one‟s own citizens simply was not an established international offense. The German government may have been legally liable for their treatment of citizens in 48

occupied territories, but in gassing German nationals it was simply exercising its sovereign rights.

An important exception, of course, was the 1815 Congress of Vienna where major European statesmen, at least, condemned the slave trade. After World War II, there was a great global desire to avoid a repetition of the horrors of the recent past, especially the Holocaust. In 1945, the United Nations was founded to prevent and resolve international conflicts and the UN charter adopted in 1945 explicitly mentioned the promotion of respect for human rights and fundamental freedoms as one of the main purposes of the organisation.151 Since then, the UN has been the main international forum through which common understandings of human rights have been elaborated and adopted. The Universal Declaration of Human Rights, adopted by the UN General Assembly in December 10, 1948, provided the first reference for international human rights standards during an era when a number of new nations emerged, reflecting the first agreement among nations over two dozen inalienable human rights. UDHR focuses primarily on civil and political rights, sometimes referred to as ‘first generation rights’. Author James Nickel suggests dividing the rights enshrined in UDHR into 6 families: security rights, due process rights, liberty rights, political rights, equality rights, and social (or “welfare”) rights, as elaborated in Table 14.152 The UDHR is not a legally binding instrument under international law i.e. it does not impose legal obligations on States. However, the principles set forth in this document have been the basis of many legally-binding international human rights instruments, including, most prominently, the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the International Covenant on Civil and Political Rights (ICCPR), both of which were adopted in 1966. Together with UDHR, they form the Bill of Human Rights. Countries have reflected the language and principles of the UDHR in their national constitutions and law which house the core of human rights norms and which forms a central part of many constitutions across the world. It is worth noting that the development of modern human rights thinking and discourse is historically very closely connected to the politics of the Cold War. The advent of human rights at the UN, including the adoption of a resolution by the UN General Assembly to draft a single covenant on human rights and the subsequent hard work by the UN Commission on Human Rights to make this a reality, was an extraordinary

development. However, such efforts were seriously hampered by the start of the Cold War in the late 1940s and early 1950s. Flagrant disregard for human rights by both the United States (as well as many of its Western allies) and the Soviet Union, especially their global expansionist and hegemonist strategy, continued. The United States and other Western governments championed civil and political rights while leaving economic and social rights to the market. By contrast, the Soviet Union and allies championed economic and social rights while seriously neglecting the issue of political rights.

Table 14 Division of the rights in UDHR into 6 families 1. Security rights … protect people against crimes such as murder, massacre, torture, and rape 2. Due process rights … protect against abuses of the legal system such as imprisonment without trial, secret trials, and excessive punishments 3. Liberty rights … protect freedoms in areas such as belief, expression, association, assembly, and movement 4. Equality rights … guarantee equal citizenship, equality before the law, and non- discrimination 5. Political rights … protect the liberty to participate in politics through actions such as communicating, assembling, protesting, voting, and serving in public office 6. Social (“welfare”) … require provision of education to all children and protections rights against severe poverty and starvation.

Source: Nickel JW: Human rights. In: The Stanford Encyclopaedia of Philosophy (Fall 2010 Edition). Edited by Zalta EN. *The UDHR does not include group rights—rights held by a group as a group rather than by its members separately. However, this limitation has been addressed in the subsequent treaties.

To reconcile these differing views, in 1953, the UN General Assembly decided to divide the single legally binding UN's Covenant on Human Rights into two distinct treaties—one concerning civil and political rights and the other concerning economic, social and cultural rights. The 1960s saw the decolonisation of Africa, and a further decolonisation of Asia and the entry of many African and Asian countries into the UN. This added impetus to the struggle for economic, social, and cultural rights at the UN and the two main international treaties on human rights—ICESCR and ICCPR— were finally completed in December 1966. In the 1970s, the UN began to establish mechanisms for monitoring human rights. The decade also saw the influential rise of non-governmental organisations particularly in 50

the sphere of women’s rights. The late 1980s and early 1990s marked the end of the Cold War, offering a unique opportunity to place greater emphasis on the economic and social rights as part of an elaborate international system for human rights. In practice, there has been a renewed push for social rights—including the right to health (discussed in detail in the next section)—in the UN, NGOs and academia since 1990s. However, new human rights challenges arising from globalisation, from economic sanctions against a number of countries and from the invasion of countries such as Afghanistan, Iraq and Libya by the US and other Western powers have brought new problems.

4.2.2 What are human rights?

A widely used definition of human rights is that they are entitlements that every human being has, simply by virtue of being a human being, irrespective of age, sex, colour, race, religion, land, nationality, and health status. Human rights, as the United Nations153 puts it, concern fundamental freedoms and human dignity:

Human rights are universal legal guarantees protecting individuals and groups against actions and omissions that interfere with fundamental freedoms, entitlements and human dignity.

Human rights define the relationship between an individual (or group) and the state which bears the primary responsibility for upholding human rights and making them a reality.152 According to Nickel, human rights are "political norms dealing mainly with how people should be treated by their governments and institutions”. When a state ratifies an international treaty, it assumes the legal obligation to implement the provisions of the treaty at national level. In other words, it assumes a duty to respect, protect, and fulfil human rights enshrined in that treaty— whether civil or political.154 The obligation to respect rights implies that governments refrain from any action (such as making laws, policies, regulations, programmes and procedures) that would interfere with or restrict human rights. The obligation to protect requires states to protect individuals and groups against human rights violations by third parties such as individuals, groups, communities, or corporations. The obligation to fulfil means that states must take positive action to facilitate the enjoyment of basic human rights. All human rights are universal, interdependent and interrelated. The enjoyment of one human right often depends on the ability to freely exercise others. Improvement in the enjoyment of one right improves the enjoyment of other rights while neglect or violation 51

of one can have an enormous negative impact on other rights. Despite the indivisibility, interrelatedness and interdependence of all human rights (most recently reaffirmed by states in the Vienna Declaration), many countries in the world, particularly the United States, continue to have a dichotomous perception of human rights, placing emphasis on civil and political rights over economic rights (health, education, employment, food and housing) and vice versa. As Alston155 elaborates:

Despite the UN‟s insistence that all human rights are „indivisible and interdependent and interrelated‟ the reality is that civil and political rights (CPR) have dominated the international agenda while economic, social, and cultural rights (ESCR) have been accorded second-class status. This is not to say that ESCR have not been the subjects of long and noisy rhetorical campaigns championed in particular by developing countries, or that the UN and other actors have not mounted a significant number of initiatives designed to promote and enhance the status of these rights. The bottom line remains, however, that ESCR continue to enjoy an inferior status and that endeavours to enhance that status have often been blocked.

It is important to note that individuals or groups rarely suffer neglect or violation of one right in isolation.156 Often there is a constellation of human rights infringements and violations.

4.3 The right to health

The right to health, the short-hand for ‘the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’ was first articulated in the WHO constitution125 in 1946:

The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, and political belief, economic or social condition.

Two years later, the UDHR157 outlined the right to health and an adequate standard of living in its Article 25 (1): “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing, medical care and necessary social services…” Although itself not legally-binding, UDHR influenced national constitutions and laws, forming the basis of many international and 52

regional legally-binding treaties, including ICESCR, which is the cornerstone of protection for the rights to health.158 Adopted by the United Nations General Assembly on 16 December, 1966 after nearly 2 decades of negotiations, the ICESCR entered into force on 3 January, 1976. To date, more than 150 states have ratified it. Article 12 of the ICESCR lists the responsibilities of states with regard to health, including: reducing stillbirth and infant mortality and promoting healthy child development; improving environmental and industrial hygiene; preventing, treating and controlling epidemic, endemic, occupational and other diseases; and assuring medical care. In May 2000, the UN Committee on Economic, Social and Cultural Rights (CESCR) which monitors the implementation of the Covenant, adopted a General Comment on the right to health (General Comment 14) that further clarifies the nature, scope and content of the right to health under Article 12 of the ICESCR. This authoritative interpretation of the right to health marked the beginning of an opportunity to use the right to health as a tool in health policy-making, planning, service delivery and monitoring and evaluation.159 The comment clarified that the right to health was not simply limited to access to medical care. Rather, it also encompasses the right to the underlying determinants of health (such as water, sanitation, food, nutrition, housing, healthy occupational and environmental conditions, health-related education and information and freedom from discrimination).160 It also identifies and describes four “core contents” of the right to health: availability, accessibility, acceptability and quality. Availability means functioning public health and health care facilities, goods, services, and programmes in sufficient quantity. All these should be accessible (geographically, economically, information-wise and on the basis of non-discrimination); be of good quality; and be respectful of medical ethics, culturally appropriate and gender-sensitive.161 The right to health implies entitlement to an effective, well-integrated and well- coordinated health system, encompassing not only health care but also the underlying determinants of health. Such a health system must be accessible to all and responsive to national, subnational and local health priorities and challenges, including equity. As Hunt and Backman162 elaborate:

Without such a health system the right to the highest attainable standard of health can never be realized. It is only through building and strengthening health systems that it will be possible to secure sustainable development, poverty

reduction, economic prosperity, improved health for individuals and populations, as well as the right to the highest attainable standard of health.

The right to health, like all human rights, imposes three specific obligations on States parties: the obligations to respect, protect, and fulfil the right to health.163 The obligation to respect requires states to refrain from interfering directly or indirectly with or curtailing the enjoyment of the right to health. The obligation to protect the right to health requires governments to take measures that prevent non-State actors from interfering with it and provide redress for infringements. The obligation to fulfil requires States to take positive steps (e.g., creating policies, structures, and practices) to promote and enforce the right to health. International human rights law implicitly recognizes that certain human rights, including certain aspects of the right to health, cannot be realised immediately (given the complexity and delicacy of the task and the resources needed to do so) but will only come into effect gradually. This is known as “progressive realisation”. However, some of the obligations such as the obligation of non-discrimination are of immediate effect and are not subject to progressive realisation. Backman, Hunt and colleagues 164 assessed the degree to which the health systems of 194 countries include non-discrimination and other features that arise from the right to health under international law. The indicators which were used to assess non-discrimination included: 1) the number of treaty-based grounds of discrimination that the state protected out of sex, ethnic origin, race, or colour, age, disability, language, religion, national origin, socioeconomic status, social status, social origin, or birth, civil status, political status, or political or other opinion, and property; 2) the number of non-treaty-based grounds of discrimination that the state protected out of health status (e.g., HIV/AIDS), people living in rural areas, and sexual orientation; and 3) general provisions against discrimination. They found that in none of the countries studied, did the law protect all 11 treaty-based grounds of discrimination; in only half, it protected five or less grounds— with ethnicity being the most common (122 countries) and age being the least-common (13 countries) protected grounds. The researchers recommended national governments disaggregate health status data on at least the five priority prohibited grounds of discrimination—sex, age, ethnicity, socioeconomic status, and rural or urban residence.

Besides addressing the issue of non-discrimination, states also have an obligation to prepare a national plan for health care and protection. Such a plan should be guided by a situation analysis. However, this obligation also remains unfulfilled in many countries across the world despite their ratification of the ICESCR and other relevant treaties. In their analysis, for instance, Backman and colleagues164 found that only 57 countries had done health situational analyses, although all were done as a part of the WHO country cooperation strategy development process. The right to health also demands the active and informed participation of individuals, communities and populations including the disadvantaged in health-related decision-making that affects them collectively and as individuals.165 Participation must be meaningful and effective. The right to health also encompasses accountability, which ‘require government to show, explain and justify how it has discharged its obligations’ arising from the right to health under international law and to provide effective redress if there has been a failure to fulfil such obligations.166 State or non-state actors can be held to account in several ways. In Accountability and the right to the highest attainable standard of health166, Helen Potts lists five broad types of accountability mechanisms which can be used alone or in combination, including (1) judicial—e.g., judicial review of executive acts and omissions, constitutional redress, statutory interpretation, and public interest litigation; (2) quasijudicial— e.g., national human rights institutions, and regional and international human rights treaty bodies; (3) administrative —e.g., human rights impact assessment; (4) political— e.g., parliamentary committee review of budgetary allocations and the use of public funds, and democratically elected health councils and health care commissions; and (5) social— e.g., the involvement of civil society (independently or in collaboration with government) in budget monitoring, health-centre monitoring, public hearings, and social audits. The right to health also requires setting out indicators and benchmarks to monitor progress regarding the realisation of the right to health, as illustrated in the General Comment:161

National health strategies should identify appropriate right to health indicators and benchmarks. The indicators should be designed to monitor, at the national and international levels, the State party‟s obligations under article 12.

Since the General Comment 14 was issued in 2000, there has been significant activity in this arena. In particular, the WHO convened the second consultation on the right to health indicators in 2004 while the Lancet published the first independent assessment of the fulfilment of the right to health in 194 countries in the world, proposing a set of 72 indicators that reflect some of the right-to-health features of health systems. The report identified the paucity of global data on the selected indicators because those with responsibilities for health systems were not paying adequate attention to the right-to- health analysis.

4.4 Eye health as an enabler of central human capabilities, and a human right

The Capability Approach, described by Nussbaum (Box 2),167 has significantly pushed forward the analysis of the situation of people with disabilities in the past decade. Adequate sight is critically important to enabling and creating central human capabilities including being able to live to the end of a human life of normal length; being able to have good health, adequate nutrition and shelter; being able to move freely and to be secure against violent assault, including sexual assault; being able to use the senses with the mind of an educated human being; and being able to participate effectively in political choices that govern one's life. The past decade has also witnessed a steady but remarkable increase in the attention devoted to the links between human rights and a number of global health issues,160 including access to water, neglected diseases, sexual and reproductive health, HIV/AIDS, access to essential medicines, and health systems156,160,164. Such linkages have not been systematically examined regarding vision impairment which over the last two decades has received greater recognition as a public health problem46,168 169 in part as a result of the 1999 launch of the WHO-backed VISION 2020: the Right to Sight, a global initiative for the elimination of avoidable blindness170. More than 100 countries across the world have committed to implementing this initiative. Its slogan references human rights in the Vision 2020 mission statement: ‘‘to eliminate the main causes of blindness in order to give all people in the world, particularly the millions of needlessly blind, the right to sight’’.171,172 The most recent reaffirmation of such values is contained in the 5-year global action plan for the prevention and control of vision impairment, developed by the WHO in consultation with member states, international non-governmental organisations (INGOs)

and other UN agencies. The plan titled, Universal access to eye health: a global action plan, 2014-2019, aims to reduce the prevalence of avoidable vision impairment by 25% by the year 2019, from the baseline of 2010. It identifies human rights in terms of 5 cross-cutting themes (besides universal access and equity, evidence-based practice, a life course approach, and empowerment of people with vision impairment) on which to focus

Box 1 Nussbaum’s Capability Approach 1. Life. Being able to live to the end of a human life of normal length; not dying prematurely. 2. Bodily health. Being able to have good health, including reproductive health; being adequately nourished; being able to have adequate shelter 3. Bodily integrity. Being able to move freely from place to place; being able to be secure against violent assault, including sexual assault… 4. Senses, imagination, thought. Being able to use the senses; being able to imagine, to think, and to reason--and to do these things in …a way informed and cultivated by an adequate education…; being able to use imagination and thought in connection with experiencing, and producing expressive works and events of one's own choice … ; being able to use one's mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech and freedom of religious exercise; being able to have pleasurable experiences and to avoid non-beneficial pain 5. Emotions. Being able to have attachments to things and persons outside ourselves; being able to love those who love and care for us; being able to grieve at their absence, to experience longing, gratitude, and justified anger; not having one's emotional developing blighted by fear or anxiety... 6. Practical reason. Being able to form a conception of the good and to engage in critical reflection about the planning of one's own life. 7. Affiliation. Being able to live for and in relation to others, to recognize and show concern for other human beings, to engage in various forms of social interaction; being able to imagine the situation of another and to have compassion for that situation; having the capability for both justice and friendship… Being able to be treated as a dignified being whose worth is equal to that of others. 8. Other species. Being able to live with concern for and in relation to animals, plants, and the world of nature. 9. Play. Being able to laugh, to play, to enjoy recreational activities. 10. Control over one's environment. (A) Political: being able to participate effectively in political choices that govern one's life; having the rights of political participation, free speech and freedom of association…(B) Material: being able to hold property (both land and movable goods); having the right to seek employment on an equal basis with others…

throughout its implementation.21 “Strategies and interventions for treatment, prevention and promotion must be compliant with international human rights conventions and 57

agreements”, according to the plan. An important assumption made by the plan is that the implementation of human rights conventions would have been achieved by the end of 2019. While these references do imply a welcome endorsement of the link between human rights and eye health at a global level, the basis on which eye health might be asserted or claimed as a human right has not been fully elucidated, nor has been the full understanding of the added value of human rights conventions and human rights-based approaches for the need-based global eye health agenda. Eye health including the availability of effective and accessible eye care services can be affirmed as a human right on the basis of the right to the highest attainable standard of health (Table 15) enshrined in Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) as well as the Convention on the Elimination of All Forms of Racial Discrimination (CERD), Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) and the Convention on the Rights of the Child (CRC).157 Importantly, the Convention on the Rights of Persons with Disabilities (CRPD), which came into force in 2008 and has now been ratified by around 150 States, provides a vital framework for advancing the rights and dignity of all people with disabilities including vision loss (Article 25; Box 2). Moreover, eye health is also closely related to, or dependent upon, the realization of many other human rights, including the rights to non-discrimination and equality, human dignity, education, access to information, adequate standard of living, food, work, life, privacy, freedom of movement, and to benefit from scientific progress and participation in decision-making as shown in Table 15 and discussed below.

4.4.1 Eye health and right to the highest attainable standard of health

In relation to eye health, the right to health means governments must generate conditions in which everyone can attain the highest standard of eye health. Such conditions include not only the provision of timely and appropriate eye care but also focusing on the underlying determinants of eye health, such as adequate access to clean water, sanitation and hygiene, safe and nutritious food, safe and healthy occupational, environmental and housing conditions, and education and eye health-related information. The right to eye health means elimination of avoidable vision impairment and rehabilitation of visually impaired people.

According to General Comment No. 14,161 the right to health ‘in all its forms and at all levels’ contains four interrelated and essential elements: availability, accessibility, acceptability and quality (often referred to as the 3AQ framework). The extent to which health systems incorporate this framework will vary depending on the level of development of State parties amongst other factors. Below is a discussion of what this framework means in the context of eye health and how existing eye care initiatives and programmes in LMICs are performing when examined through the lens of the 3AQ framework.

4.4.1.1 Availability

Availability means ensuring functioning eye health-related public health and health-care facilities, goods and services, as well as programmes, in sufficient quantity within the jurisdiction of the State party. Regardless of the development level of the

Box 2 Excerpt from the Convention on the Rights of Persons with Disabilities Article 25 – Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall: 1. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes; 2. Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons; 3. Provide these health services as close as possible to people’s own communities, including in rural areas; 4. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care; 5. Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner; 6. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

country, these facilities, goods and services should include clinics, hospitals, and other eye health-related infrastructure, the underlying determinants of eye health, trained eye health professionals receiving domestically competitive salaries, and essential drugs, as defined by the WHO.161,164 Unfortunately, for most people living in LMICs, eye health services are neither widely available nor easily accessible. This is despite a significant increase in the absolute number of new and refurbished eye care units and the number of eye care professionals across LMICs in the last two decades. A 2007 report173 by the WHO argues that ‘universal coverage is far from being achieved, as in many places the infrastructure is inadequate, with no access to a dedicated eye theatre, services covering too large an area and facilities in need of refurbishing and updating’. According to WHO, there is a ‘dramatic lack’ of eye-care infrastructure (clinics, hospitals, and other eye health-related buildings) in many poor rural districts across LMICs whose residence have to travel a great distance to obtain cataract surgical services, correction of refractive errors or other needed eye services.173 Many governmental and non-governmental organisations have been trying to address this problem by organising intensive efforts to deliver care including ‘eye camps’ in poor rural and remote areas. However, there is no continuum of care and the quality of eye services in a so-called camp setting is typically low with a disappointingly high proportion of cataract surgeries in camp settings have poor visual outcome.174 Vision 2020 recommends the existence (or establishment) of at least one district level eye-care centre with well-trained and a skilled workforce for a population of around one million people (0.5–2 million).175 However, a major challenge to the establishment of effective eye care facilities in many LMICs, especially in Africa, has been the paucity of trained human resources for eye health.176 For example, there is only one or less than one ophthalmologist for every one million people in Africa compared with one for every 400 000 people in India and one for every 10 000-20 000 people in wealthy countries.173 Vision 2020 aims to improve this ratio to 1:250 000 in sub-Saharan Africa, and 1:50 000 in Asia by the year 2020.

In most LMICs, the low ophthalmologist to population ratio is further complicated by the substantial uneven geographic distribution of ophthalmologists and other eye care personal, with rural areas being the most unserved and disadvantaged.177 The problem is the most severe in rural Africa where population is dispersed over a wide geographic area and where distances are great, roads few and transportation rudimentary and expensive. 60

Table 15 Human rights related to the leading causes of worldwide vision loss

Human rights Relevant human rights Cause of vision loss

instruments

Cataract retinopathy Diabetic errors Refractive Trachoma Trauma Glaucoma deficiency A Vitamin blindness River Right to the highest ICESCR, * article 12; CEDAW, † √ √ √ √ √ √ √ √ attainable standard articles 12 & 14; CRC, ‡ article 24 of health Right to the benefits UDHR€, article 27; ICESCR, article √ √ √ √ √ √ √ √ of scientific progress 15 Right to education UDHR, article 26; ICESCR, article √ √ √ √ √ √ √ √ 13; CEDAW, articles 5(b) & 10; CRC, articles 28 & 29; Right to an adequate UDHR, article 25; ICESCR, articles √ √ √ √ standard of living 9 & 11; CEDAW, articles 11(e) & 13; CRC, articles 26 & 27 Right to seek, receive UDHR, article 19; ICCPR, ¶ article √ √ √ √ √ √ √ √ and impart 19; CEDAW, articles 10(e), 14(b) information &16(e); CRC, articles 12, 13 &17; Right to liberty and UDHR, article 3; ICESCR, article √ √ √ √ √ √ √ √ security of the person 12; CEDAW, articles 11, 12, &14 Right to life and UDHR, article 3; ICCPR, article 6; √ √ √ √ √ √ √ √ survival CRC, article 6; Right to equality and UDHR, article 2; ICCPR 2, 16 & 26; √ √ √ √ √ √ √ √ non-discrimination ICESCR, article 2(2); CERD**, articles 1, 2, 4 & 5; CRC, article 2; CEDAW articles 2, 3, 4 & 15; CRPD†† articles 3, 4, 5 and 12 Right to food ICESCR, article 11(1&2) √ √ CRC, article 24(2)(c) Right to free UDHR, article 13 √ √ √ √ √ √ √ √ movement Right to bodily ICCPR, article 7, 9 & 17 √ √ √ √ √ √ √ √ integrity and security of the person Right to privacy UDHR, article 12; ICCPR, article 17 √ √ √ √ √ √ √ √ Right to participate in UDHR, article 21; ICCPR, article 25 √ √ √ √ √ √ √ √ government * International Covenant on Economic, Social and Cultural Rights † Convention on the Elimination of All Forms of Discrimination Against Women ‡ Convention on the Rights of the Child € Universal Declaration of Human Rights ¶ International Covenant on Civil and Political Rights ** Convention on the Elimination of All Forms of Racial Discrimination †† Convention on the Rights of Persons with Disabilities 61

In all LMICs, alongside sharp urban-rural contrasts, there is a parallel movement of skilled eye care personnel from the public to the private sector, which is less affordable to the majority of people. An even more serious problem is the wide-scale migration of skilled eye care workers to affluent countries, the precise magnitude of which has not yet been examined. Without effective strategies to address the continued rural-urban disparities and international migration of eye care workers, it is unlikely that many developing countries will achieve the targets set by Vision 2020, for example, to increase the cataract surgical rate and coverage required to eliminate cataract-related blindness and severe vision impairment by the year 2020.

Equally important is the need to dramatically improve the functioning of existing human resources and infrastructure for eye care, although availability of reliable data has been a big challenge. For example, a single ophthalmologist can perform 1000–2000 cataract surgeries per year in a well-managed eye care unit but most ophthalmologists in LMICs operate far below their capacity because of shortages of supplies and equipment, low worker motivation, lack of skill mix, frequent power outages, and a host of other reasons.70 Many existing district eye care programmes in LMICs do not have effective screening arms and are therefore unable to develop substantial volumes. Effective population-based screening programmes are warranted to identify and treat those with refractive errors, cataract and other avoidable causes of vision loss. To be effective, the screening programmes should be evidence-based, well-coordinated, accessible, of high quality, and supportive of the other fundamental principles of human rights.

The right to health including eye health extends beyond health care to encompass the underlying determinants of health.157,158 Millions of cases of blinding eye infections such as trachoma and onchocerciasis (river blindness) are related to lack of water and sanitation or unsafe water more generally. Australia has the dubious distinction of being the only wealthy country that still has trachoma. The disease disappeared from mainstream Australia 100 years ago, but remains prevalent in remote Indigenous communities because of lack of water and sanitation.178,179 Similarly, millions of cases of unilateral or bilateral eye trauma and their associated vision loss occur each year because of unsafe working or living environments.180 Taking simple and time-tested measures to tackle environmental hazards such as water shortages, insanitation, flies, and eye trauma

can significantly reduce the burden of ocular morbidity and its associated vision impairment.

4.4.1.2 Accessibility

The right to health offers a very comprehensive view of accessibility by asserting that health facilities, services and goods—as well as the underlying determinants of health— must be accessible to all, especially the most vulnerable or marginalized sections of the population. The latter, in law and in fact, should occur without discrimination along physical and economic lines and information-wise.161 The unfortunate reality is that discrimination and inequalities in access to health care and other determinants of health—based on characteristics such as race, ethnicity, gender, or religion are deeply rooted and persist across the world.181 Eye health is no exception. Women, older adults, rural dwellers, indigenous groups and the less educated people suffer disproportionately from the burden of vision impairment because they are less likely to access eye health services. Approximately, two out of three persons who are blind worldwide are women.1 Some of these disparities can be explained by the underlying differences in age (i.e. the presence of more elderly women than men in the population) and genetic and hormonal factors. However, a substantial part of these disparities are due to differences in access to care, with women in LMICs receiving less access to eye care than men.24,182,183 The likely reasons include women’s care-giving responsibilities, reduced freedom of movement, lack of financial control and lack of access to health information.28,45,182-189 In many cultures, women’s fear of being stigmatised by their families and communities for having a vision problem may prevent them from seeking help.187

Indigenous populations, such as Australia's Aboriginal population, have lower access to eye care and many other determinants of eye health than non-Indigenous people.179 For example, the 2008 Australian National Indigenous Eye Health Survey (NIEHS) revealed that adult indigenous Australians had a 12-fold higher prevalence of cataract blindness than non-Indigenous Australians,14 reflecting uneven access to eye care.

Cataract is the leading cause of vision loss worldwide, accounting for a third of all cases of blindness.17 Cost has been identified as a major self-perceived barrier to care seeking in many population-based cross-sectional surveys in developing countries56-58 and much effort by blindness prevention programmes has been focused on making surgery financially and geographically more accessible. A complex interaction of social, economic, 63

cultural, motivational, and informational factors determine whether an individual blind or having low vision due to cataract will undergo cataract surgery.61 A significant proportion of them are not aware that the cause of their vision loss is treatable. Even if this barrier is overcome, many still decide not to undergo this procedure. For example, Chibuga and colleagues60 identified 128 individuals with cataract in 12 villages in Hai district of Kilimanjaro region, Tanzania. They were informed of regular services (within 5 km) providing transportation and cataract surgery. At years 1 and 2 after the survey, 97 could be followed up. Only 22 (22.7%) accepted surgery—18 in the first year and 4 in the second (only 5 persons who went for surgery were blind or had severe vision impairment). The elderly were the least likely to accept surgery.

While the barriers to uptake of cataract surgery have received increasing attention in recent years, surprisingly little emphasis has been given to systematic evaluation of barriers to care for other global eye health problems, including refractive errors, glaucoma, diabetic retinopathy and eye trauma. A broadened understanding of barriers to accessing eye health services—one which includes a focus on all phases of the programming process and all major causes of vision loss—is needed.

4.4.1.3 Acceptability Acceptability is the degree to which an individual perceives health-related (or other) interventions to be fair, reasonable, appropriate, and non-intrusive.190 It is an undisputed measure of ‘social validity’; individuals or communities are more likely to use an intervention that they find to be acceptable.191 In the context of the right to health, acceptability means that health facilities, goods and services should be respectful of medical ethics, culturally appropriate and gender sensitive. As the General Comment No. 14,161 underlines:

“All health facilities, goods and services must be respectful of medical ethics and culturally appropriate, i.e. respectful of the culture of individuals, minorities, peoples and communities, sensitive to gender and life-cycle requirements, as well as being designed to respect confidentiality and improve the health status of those concerned.”

When this definition is used to assess the performance of eye health initiatives in LMICs, it becomes apparent that very little information is available on the extent to which eye 64

health facilities, goods and services are acceptable to users and meet their expectations. It is often unclear if people for whom eye care services are designed are comfortable using them and if their right to dignity and privacy is recognised, respected and protected.192 Factors that may influence the acceptability of eye health interventions, such as perceived benefit and previous experience with the health service in question, have rarely been examined in LMICs. This research gap may well be present also in relation to minority ethnic and immigrant communities in well-resourced countries. Such information can best be obtained from periodic population-based surveys in the general population, which include not only users but also non-users, paying special attention to the marginalised and poor. However, such routine surveys have not been carried out and studies should be undertaken as part of the new global plan for the prevention and control of blindness.

4.4.1.4 Quality

The right to health requires that health care interventions are scientifically and medically appropriate and of good quality.193 Rights-based approaches to health not only focus on the quantity of health care interventions but also on their quality.193 They require that health interventions and processes be guided by internationally-recognised quality standards. As the General Comment No. 14161 underlines:

Health facilities, goods and services must also be scientifically and medically appropriate and of good quality. This requires, inter alia, skilled medical personnel, scientifically approved and unexpired drugs and hospital equipment, safe and potable water, and adequate sanitation.

Despite its undisputed value, quality has been one of the most neglected aspects of existing eye health initiatives across LMICs. Although eye services have expanded, there has been little analysis of their quality and minimal systematic effort to document the quality of existing eye health facilities, goods and services. The little data that are available show that progress towards improving the quality of eye care interventions has been disappointingly slow, giving rise to calls that quality receive high attention by all policy- makers, programme managers and evaluators.174,194 The quality of cataract surgery in LMICs is discussed below as an example. There is growing evidence that the quality of cataract surgery received by those living in LMICs is far below the minimum standards set by the WHO.62,65,174,195-199 A quarter

to a third of the cataract surgeries in LMICs have poor visual outcome (visual acuity < 6/60 on presentation). A common limitation of studies examining quality of cataract surgical interventions in these settings is that they typically focus only on visual outcome of cataract surgeries.70 However, other aspects of the quality of cataract surgery as well as the process through which outcomes are obtained have rarely been examined. This is despite the fact that cataract surgery is one of the most frequently performed surgical procedures worldwide.200 Good outcomes can be achieved in most cases if quality is respected. Steps are need to improve case selection, lens power calculation, surgical skills, and management of surgical complications, as well as to prevent and treat endophthalmitis, correct residual refractive errors after surgery and treat posterior capsular opacification (one of the most common complications of cataract surgery).70,201

4.4.2 Eye health and other human rights

As mentioned earlier, eye health is also closely related to or dependent upon the realization of many other human rights, as contained in the International Bill of Rights, including the right to non-discrimination, equality, human dignity, education, access to information, adequate standard of living, water, food, work, life, privacy, freedom of movement, ability to benefit from scientific progress and to participate in decision- making. Rights are not isolated but interconnected, at times with one right (such as the right to learn) dependent on others (such as the right to non-discrimination, to good nutrition, and to health). This dependency or connectivity can be unidirectional (pointing in one direction) or bidirectional (pointing in both directions, or reciprocal) and influenced by other human rights.156 The relationship between eye health and four human rights—the right to life and survival, the right to education, the right to food, and the right to the benefits of scientific progress - are illustrated below.

4.4.2.1 Eye health and the right to life

The right to life is clearly a necessary condition for the enjoyment of all other human rights. There is a substantial body of evidence demonstrating that people with sight- threatening conditions such as cataract, glaucoma, diabetic retinopathy and onchocerciasis have an increased risk of death compared with persons without these conditions.202-219 Vision loss has been shown to be not only associated with high mortality but also with a number of factors that may lead to increased risk of death such as

unintentional injuries, falls, depression, obesity, physical inactivity, cardiovascular disease, dementia and cancer.205,211,213,220-228 Once a person becomes blind, his or her life expectancy is substantially reduced, for example by up to 15 years in the case of river blindness.229,230 Blind children have much higher mortality than those with good vision.

Most studies on the association between vision loss and mortality have been conducted in the United States, Australia and other well-resourced countries. Evidence from LMICs is essentially non-existent. It is important to more accurately characterise the links between vision loss and mortality, whether through direct or indirect mechanisms. This is particularly important for LMICs in which a significant proportion of the population has more severe and long-lasting impairments than their counterparts in wealthy countries.

4.4.2.2 Eye health and the right to education

The right to eye health is also closely related to the right to education. Vision impairment can diminish the ability of a person to commence or continue their education. Vision problems may lead to low self-esteem which may be linked to associated difficulties with reading and writing and with comprehending or expressing thoughts. Many children in resource poor countries discontinue their education simply because of their vision impairments (not to mention that many often miss out on education to act as carers for older family members with low vision or blindness who cannot look after themselves). Children with poor sight are less likely to participate in a range of physical and sporting activities and to secure employment even if they do complete their schooling.

Good quality education enables one to achieve one’s full potential, realize employment opportunities and develop life skills,231 all of which can positively impact on eye health. Education is very important for good eye health as it enables people to access, understand and use eye health-related information, seek care when they need it and make behavioural and lifestyle changes when necessary. People with no formal school-based education suffer disproportionately high burden of vision impairment and blindness.

4.4.2.3 Eye health and the right to food

The right to adequate food is recognized in several instruments under international law, most notably ICESCR.157 Its core content implies “the availability of food in a quantity and quality sufficient to satisfy the dietary needs of individuals, free from adverse substances, and acceptable within a given culture; the accessibility of such food in ways that are 67

sustainable and that do not interfere with the enjoyment of other human rights”. Three global eye health issues are particularly related to the right to food including vitamin A deficiency (VAD), diabetic retinopathy and river blindness and are briefly discussed below:

Vitamin A deficiency: Elimination of VAD and its consequences, including blindness, by the year 2000 was one of the goals set at the World Summit for Children in 1990. However, insufficient progress has been made in improving malnutrition over the past few decades. The WHO’s latest estimates232 indicate that around 190 million preschool children and nearly 20 million pregnant mothers suffer from VAD in over a hundred LMICs, especially in Southeast Asia and Africa. 250000 to 500000 children become blind due to this condition every year, nearly half of them dying within one year of becoming blind. Most often those affected are the poorest, most marginalized and vulnerable families and communities.233 Currently, the primary control strategy is the provision of high-dose vitamin A supplements to all children 6 to 59 months of age in the affected areas. Although it is cost-effective and efficient, the benefit is transient and children need repeat supplementation every 4-6 months. The other control strategy is dietary fortification which holds great promise but needs to be combined with other strategies and takes many years to institute.234 A major challenge is to ensure that the fortified food (such as oil, sugar, milk and milk products, infant foods, flour) reaches all at- risk children, mothers and their families. Dietary diversification is the most sensible, fundamental and sustainable option to ensure intake of both micro- and macronutrients. Elimination of VAD depends largely on the increased consumption of vitamin A-rich foods such as fish oils, liver, milk, eggs and butter, dark-green leafy vegetables, yellow and orange-coloured fruits.233 Such foods are often not accessible or affordable to those most in need.

Diabetic retinopathy: Diabetic retinopathy is a leading cause of blindness in adults in all countries.16 Healthy diet along with regular physical activity can prevent or delay the onset of type 2 diabetes.235-237 Poorer people tend to buy cheaper, unhealthier, energy- dense foods which are actively promoted by a powerful global food industry, and contribute to rising rates of obesity globally. Addressing this requires substantial attention from the state and its social and health policy institutions, working with a wide range of other sectors and stakeholders.

River blindness: Onchocerciasis (river blindness), is a centuries-old parasitic disease that devastated remote communities in Africa, Latin America and Yemen. It is characterized by intense skin itching and ultimately by decreased vision and blindness.238 It is the world's second leading infectious cause of blindness. The WHO estimates that 37 million people are currently infected with onchocerciasis, and another 140 million are at risk. Approximately 300 000 people are already irreversibly blind due to this neglected parasitic tropical disease. More than 99% of people infected people live in 30 sub-Saharan African countries. It is caused by a worm (onchocerca volvulus), which is transmitted by the blood-feeding black simulium fly, which breeds in oxygen rich water of fast-flowing rivers and streams.239 Fear of contracting the disease and becoming blind has led to mass migration of millions of people away from areas infested with the black fly, resulting in “impaired worker productivity and hence reduced harvests”.240 For example, in Burkina Faso, 15% of the country’s total land area has been deserted. Often, the soil around the affected areas is very fertile.

As a result of its devastating effect on eye health, food security and development in West Africa, four UN agencies, the WHO, World Bank, UNDP, and Food and Agriculture Organization (FAO) launched the Onchocerciasis Control Programme (OCP) in 1974.241 The programme stretched over 1 200 000 km² to protect 30 million people in 11 countries. For years, the OCP carried out regular aerial larvicide spraying of the breeding sites in fast-flowing rivers so that the black fly larvae do not develop into adults capable of transmitting the disease. Mass treatment with ivermectin, a microfilaricide, in high-risk communities was initiated in 1989 following the donation of the drug ivermectin (Mectizan) by its manufacturer Merck. When the OCP ended in 2002, it had succeeded in eliminating onchocerciasis as a public health problem in 10 out of the 11 countries, had freed 18 million children from the risk of blindness, prevented 600 000 people from becoming blind and reclaimed 25 million hectares of abandoned arable land for settlement and agricultural production. The land is sufficient to feed about 17 million people. In 1995, a second programme was launched to combat this disease in the rest of Africa. By the end of 2010, a 73% reduction in prevalence of infection from pre- African Programme for Onchocerciasis Control (APOC) levels had been achieved, one million disability-adjusted life years (DALYs) had been averted and around 76 million people in more than one dozen countries were receiving regular treatment. Over 13 countries still have high disease prevalence due to conflict which constrains the delivery of and access to 69

services,242,243 inadequate budgetary allocations and fragile health systems.244 A danger of resurgence of disease looms.

4.4.2.4 The human right Eye health and the right to the benefits of scientific progress

To enjoy the beneﬁts of scientiﬁc progress and its applications, including access to medical products and technologies, is enshrined in UDHR and ICESCR. Nevertheless, it remains one of the most neglected human rights. As Chapman245 complains, “this right is so obscure and its interpretation so neglected that the overwhelming majority of human rights advocates, governments, and international human rights bodies appear to be oblivious to its existence”.

The global eye health community, state and non-state actors must begin to conceptualize the contents of this right and use it as a tool to facilitate, in particular, the access of disadvantaged and marginalised people to access eye health services, improve transparency in decision making and ensure non-discrimination and equal treatment. But sadly, the ground reality is that each year millions of people in LMICs are becoming blind or visually impaired needlessly from eye conditions that could be easily detected and treated by drawing on and applying available scientific knowledge. Diabetic retinopathy, for example, is a common complication of diabetes and an important cause of worldwide blindness. Vision loss from diabetic retinopathy can be slowed or prevented by early detection and laser therapy.246 Yet, effective screening and treatment tools, such as using a digital fundus camera or argon laser device, are still not widely available because of their high cost. Similarly, people in LMICs have not benefited as much from new anti-glaucoma drugs as have their counterparts in high income countries. All new anti-glaucoma drugs are prohibitively expensive for widespread use in LMICs and the cost can mean the difference between being sighted or visually impaired.118 A 2.5 ml bottle of latanoprost eye drops (Xalatan by Pfizer), which may last only six weeks, costs patients in Pakistan US $11.2. The cost of the drug per year is thus around $100. The annual per capita income, however, is only around $1254. Similarly, each bottle of dorzolamide (Trusopt by Merk) and dorzolamide-timolol (Cosopt by Merk) eye drops costs about $9.6 and $ 9.7, respectively. Most often, these drugs cannot be used as monotherapy in many patients and have to be used in combination which most patients pay out-of-pocket.118 They are few examples of pharmaceutical companies contributing directly to increase people’s access to drugs they could not otherwise afford. The unprecedented decision by drug-maker, Merck,

in October 1987 to provide ivermectin (Mectizan) free to anyone who needed it has resulted in substantial reductions in the devastating effects of river blindness in Africa. Similarly, a significant reduction in the number suffering from active trachoma—from 84 million to 41 million people—has been possible largely because of mass treatment with azithromycin donated by Pfizer through the International Trachoma Initiative which was founded in 1998 in response to WHO’s call to eliminate blinding trachoma by 2020 (GET2020). However, 8.2 million people still need surgery for trichiasis and about 41 million people, mostly women and children, still have active trachoma infection and need antibiotic treatment. In summary, the human right to enjoy the beneﬁts of scientiﬁc progress and its applications should be invoked to protect access rights to available eye health medical products and technologies and prevent those from withholding any elements of standard eye care.

4.5 Applying human rights to eye health

Attention to human rights in health work can enhance its value, impact and also focus attention on duty-bearers.156 Many non-governmental organisations, governments, and academia have effectively used human rights as a framework through which to address major health issues such as HIV/AIDS, reproductive health, mental health, disability, neglected diseases and health systems strengthening. The approaches used to highlight health problems can be broadly grouped into three major types: 1) advocacy 2) application of legal standards, and 3) programming.156,247 In many cases a combination of approaches is used, although for clarity are separated in the examples below.

4.5.1 Advocacy and bearing witness

Advocacy is an essential element of health work and in the last three decades global frameworks for advocacy have been developed to raise the profile of, and increase resource allocation for, several public health problems. These include conditions such as HIV/AIDS, tobacco use, malaria, injuries, non-communicable diseases, and vision impairment.

The WHO248 defines advocacy as “a combination of individual and social actions designed to gain political commitment, policy support, social acceptance and systems support for a particular health goal or programme.” According to the international NGO Care249 “advocacy is the deliberate process of influencing those who make policy

decisions”. The many definitions available have in common a focus on ‘influencing decision-making’.

The use of rights-based advocacy in the area of health work has demonstrated great potential. Pressure by NGOs, HIV-infected people and some governments (grounded in the right to health and the right to life), together with the growth of generic pharmaceutical manufacturing capacity in a number of LMICs, resulted in reduction in the availability and prices of antiretroviral drugs from about US$10 000 to US$350 per patient per year in the early 2000s.250 Advocacy groups may use a wide range of activities such as press conferences, press releases, interviews, demonstration, lobbying, and participation in conferences to expose human rights violations by state and non-state actors and recommend solutions. As Gruskin and colleagues 156 put it: “The focus of activism is often on recognition and exposure of governmental obligations, establishing the amount of government action or inaction that contributes to existing violations, looking at how a government deals or does not deal with identified problems, and recommending solutions”.

A similar approach can be successfully and efficiently applied to advance the visibility of eye health issues and suggest practical solutions. Besides the right to health and its various underlying determinants, rights-based eye health advocacy can be grounded in, for example, the right to food (river blindness, VAD), right to life (cataract, glaucoma, diabetic retinopathy, onchocerciasis and all other sight-threatening conditions), right to education (refractive errors in children, trachoma, river blindness), right to human dignity (trachoma and river blindness), and the right to benefit from scientific progress (access to anti-glaucoma and other drugs, eye health technologies) as described earlier.

4.5.2 Application of legal framework

Most countries have ratified one or more international human rights treaties that recognize the right to health and impose binding legal obligations on them to adopt policies, legislation and other measures that will improve the health of their citizens and to refrain from conduct that denies or impinges on this right. Constitutional provisions of the right to health or other rights, if any, can be invoked in a court of law if violated.156 While litigations and legal battles or their settlements are frustratingly lengthy, costly and have mixed results, they have occasionally been used as a strategy to hold governments 72

accountable for their commitment to human rights, including the right to health. In many instances, individual cases have created entitlements for entire population groups. Courts have granted access to essential medicines as part of the fulfilment of the right to health or the right to life in several countries in Central and Latin America and Asia.251,252 Hogerzeil and colleagues251 examined 71 court cases from 12 low-income and middle-income countries in which individuals or groups had claimed access to essential medicines with reference to the right to health in general, or to specific human rights treaties ratified by the government. Of these, most (83.1%) were successful—primarily because of the constitutional provisions on the right to health, supported by human rights treaties. In about a quarter of successful cases, the ruling was extended to all others in similar circumstances in that country. They conclude that skilful litigation can force governments to fulfil their obligations and are especially valuable in countries in which social security systems are in their infancy. At the same time, they caution against relying too heavily on mechanisms that seek redress through the courts and, instead, recommend employing them only as a last resort.

4.5.3 Rights in delivery of care and programming

In the past decade, an increasing emphasis has been placed on applying rights-based approaches to poverty-reduction, health, education, environment protection and other development issues.160 Much of this interest has been the result of growing recognition that needs-based approaches to programming and service-delivery have failed to substantially improve outcomes and to reduce disparities. A major critique of the Millennium Development Goals which were focused on achievement by the year 2015 is that they have greatly neglected disparities, inequalities and inequities, and human rights.253 It is anticipated that the Sustainable Development Goals (SDGs) currently being negotiated will address these gaps.254

In 1997, United Nations’ Secretary-General Kofi Annan announced a series of reforms at the United Nations.255 Most notably, these included a call to mainstream human rights into all work of the UN. To ensure consistency in the application of human rights to their development work at the international, regional and country level, in 2003 UN agencies came together and adopted a Common Understanding of human rights-based approaches which has three principles, namely: i) all programming should further the realization of human rights; ii) human rights standards and principles should guide all 73

aspects of programming; and iii) programming should support development of the capacities of duty-bearers to meet their obligations, and of rights holders to claim their rights (Box 3).256 Both UN agencies and NGOs worldwide are increasingly using rights- based approaches in planning, implementing and evaluating projects and programmes.

Box 3 UN Statement of Common Understanding of the Human Rights-Based Approach to Development 1. All programmes of development co-operation, policies and technical assistance should further the realisation of human rights as laid down in the Universal Declaration of Human Rights and other international human rights instruments. 2. Human rights standards contained in, and principles derived from, the Universal Declaration of Human Rights and other international human rights instruments guide all development cooperation and programming in all sectors and in all phases of the programming process. 3. Development cooperation contributes to the development of the capacities of ‘duty- bearers’ to meet their obligations and/or of ‘rights-holders’ to claim their rights. In relation to eye health, rights-based analytical frameworks can be applied to a variety of neglected eye health concerns and the underlying determinants of eye health.160 Rights-based approaches requires integrating human rights norms and principles in situation analyses and needs assessments, as well as in the design, implementation, monitoring, and evaluation of all eye health-related policies and programmes.255 In general, this would demand explicit, deliberate, and systematic attention to international human rights principles and standards such as the promotion of equality and non- discrimination, facilitation of participation, and enhancing accountability as well as applying the 3AQ framework to all aspects of eye health related policy-making and all stages of the programming cycle.257

4.6 The added value of human rights-based approaches for eye health

4.6.1 Rights imply obligations and duties; focusing on needs does not

Both need-based and rights-based approaches define the relationship between individuals (alone or in community) and the state. However, needs are clearly not the same as rights258 and need-based approaches do not necessarily imply obligations or duties(Table 16). While they encourage people to participate in needs assessment at their level, they discourage them from participating at higher policy-making circles.259 They are often top- 74

down and paternalistic processes whereas rights-based approaches to health are grounded in processes and participation which emphasize and seek to apply internationally recognized human rights principles, norms, standards, instruments and support mechanisms to ensure that entitlements to health, education and other services are attained, enhanced and safeguarded. They are concerned with the legal obligations, not just moral ones, of states towards their people, and attempt to build the capacities of both the state to fulﬁl its human rights obligations and of citizens to claim their rights and entitlements from the state or non-state actors. They are bottom-up and policy-oriented, ensuring empowerment of people, for example, through their participation in decision- making processes and through incorporation of accessible accountability mechanisms.255

4.6.2 Not only outcomes, but also processes

Need-based approaches to health are typically outcome-oriented, valuing mainly inputs, outputs and outcomes (e.g. number of hospitals/hospital beds per million population, number of ophthalmologist per million populations, the annual number of cataract surgeries and the number of children who received refractive correction in a population).

Table 16 Need-based juxtaposed with human rights-based approaches Need-based approaches Human-based approaches Emphasise on meeting needs Emphasise on meeting international human rights 1. standards and principles An individual is recognised as a An individual is recognised both as a person and as 2. person a right-holder 3. Concerned with outcomes Concerned with both outcomes and processes Generally assumes a Has preoccupation with the disadvantaged, 4. homogeneous population vulnerable and marginalised individuals, groups and populations A need not fulfilled leads to A right that is not respected leads to a violation, 5. dissatisfaction. and its redress or reparation can be legally and legitimately claimed. Involve narrow sectoral projects Involve inter-sectoral projects and programmes, 6. programmes, focusing mainly on focusing on not only social context but also the the on the social context economic, cultural, civil and political contexts. 1. A Human Rights-Based Approach to Programming: Practical Information and Training Materials. United Nations Population Fund and Harvard School of Public Health; 2010 2. Boesen JK, Martin T. Applying a Rights-Based Approach - An inspirational guide for civil society. Copenhagen, Denmark: The Danish Institute for Human Rights; 2007

In contrast, rights based approaches to health emphasize not only outcomes of programming but also the processes by which the outcomes, and more importantly their impact, are achieved.162 They focus on informed participation, non-discrimination and transparent mechanisms of accountability in the way health interventions, including those targeted at eye health, are designed, implemented and evaluated. They particularly focus on how services such as eye care services are delivered rather than just what services are delivered and always question who is included, who is left out, and whether inequalities and inequities have been addressed.

4.6.3 Emphasis on disadvantaged individuals and neglected populations

Need-based approaches place emphasis on assessing local health needs, but provide little guidance on variations in health status across population groups and individuals. They may assume a homogeneous population, and do not specifically devote attention to identifying differences between people, whether by income, education, geography, race, ethnicity or other differentiators in society. Rights-based approaches, on the other hand, have a particular preoccupation with the disadvantaged, vulnerable, marginalised individuals, groups and populations including those living in poverty.165,257 There is undisputed evidence that members or subgroups of a population can vary widely in their susceptibility to eye diseases and associated vision loss.49-51,56,58,64-66,107,260-262 Women, rural dwellers, people with no or less formal education, indigenous groups, and the elderly are disproportionately affected, suggesting that existing need-based prevention and control efforts and programmes should more systematically identify and address such disparities whenever and wherever they may occur. It is the responsibility of governments to commission, undertake and use high-quality research to address the eye health needs of the entire population. Periodic monitoring is necessary to identify particular groups that may be experiencing a high burden of vision impairment and blindness; to determine who has access to health and who is left out and who receives quality care (once access is achieved) and who not; to provide and facilitate targeted interventions; and to hold duty- bearers (state and non-state actors, donors, international organizations) accountable for their failures to respect, protect, and fulfil the right to health. Monitoring disparities in eye health would require the collection of data on the pathway from need assessment, to care (received or not) to outcome (good or not) to impact on individuals and communities

using multiple strategies for data collection and analysis. Emergent disparities and their underlying causes should be detected at an early stage and addressed in a timely manner.

4.6.4 Takes a holistic view

Need-based approaches to health including eye health often involve narrow sectorally focused projects, with less attention to programs, to systems, and to policy. They are often designed to address the societal manifestations of a health problem and involve targeted funds and action, often not only by government but by development partners including Foundations, donors and civil society. They are often limited, however, in what they achieve and rarely facilitate deeper level transformations.263

Rights-based approaches, on the other hand, involve intersectoral projects and programmes, focusing on social, economic, cultural, civil and political context, and are policy-oriented.259 They are designed to address both the manifestations of health problems and their immediate causes and often seek transformation in how society is structured and functions so as to protect the interests of all over time.

An analysis of the existing eye care programmes across LMICs show that they are often narrowly focused on establishing new eye care facilities or refurbishing existing ones, leaving other core aspects of health such as accessibility, acceptability, and quality partially or not addressed at all. Issues of inequalities and inequities (inequalities which are unfair and unjust) are rarely tackled although a rights-based approach would do much to advance them. Availability of eye care facilities alone and that too only in some geographic areas does not guarantee that everyone will use them and benefit from them. These programmes should expand their scope of responsibilities to encompass accessibility, acceptability, quality, non-discrimination, equality, participation and accountability.

4.6.5 Conclusions

Eye health and human rights are tightly connected and should be increasingly defined in terms of one another. Eye health including access to effective eye care services can be affirmed as a human right not only on the basis of the right to the highest attainable standard of health enshrined in Article 12 of the International Covenant on Economic, Social and Cultural Rights but also several other legally binding instruments. Global eye health is strongly related to the realization of not only the human right to health but also

other human rights, including the rights to non-discrimination and equality, human dignity, education, access to information, adequate standard of living, food, work, life, privacy, free movement, the benefits of scientific progress and participation in decision- making. Vision impairment compromises the ability of a significant proportion of world population to enjoy the rights to human dignity, privacy, education, access to information, adequate standard of living, work, life, and the benefits of scientific progress and participation in decision-making. The use of evidence by both researchers and policy actors to eye health policy and practice can be greatly deepened and broadened by human rights-based approaches. This is especially so where so much of vision impairment, blindness and eye ill-health can be prevented or treated. A rights-based approach is necessary for ensuring attention and resources to narrow the gap between advantaged and disadvantaged people in terms of disease burden, access to eye care services and treatment outcomes.264 Much of the burden of vision impairment and blindness is socially determined, driven by social exclusion, discrimination, marginalisation, and stigma— as well as influenced by the political determinants of health. Action outside the health sector is as important as action within this sector, but the benefits of investing in them will be achieved when their synergies are identified and leveraged.265

4.7 A conceptual framework to examine the problem of cataract blindness and vision impairment

Disaggregation of health data is critical to uncovering inequalities in health status and access to health care by identifying population groups requiring special attention, such as older people, children, women, people with disabilities or ethnic, religious, and racial monitories.164 We propose a conceptual framework for analysing the burden of a given public health problem, for example age-related cataract blindness, and the way in which health systems respond to it. The conceptual framework, displayed graphically in Figure 5, contains questions relating to the 3AQ framework and data needed to answer them. The framework contains measures of disease burden, access to health care and the quality of care. As a practical example, we applied this conceptual framework to the problem of cataract blindness in Pakistan. Data for this purpose were extracted from publications and reports derived from Pakistan National Blindness and Visual Impairment Survey 2001- 2003.56,64,107,109-114,266 Data on disease burden (e.g., prevalence of cataract blindness),

access to care (e.g., cataract surgical coverage and barriers to cataract surgery) and quality of care (e.g., outcome of cataract surgery) are reported below and in Figure 6.

Figure 5 A proposed conceptual framework for analysing the burden of a given public health problem (e.g., cataract blindness) and the way in which health systems respond to it.

From disease burden…

1 Disease •Questions: What is the burden of disease? Who is most affected? burden •Data to display: Measures of disease burden (e.g prevalence of cataract blindness and visual impairment) by gender, ethnicity, socioeconomic status and other grounds.

2 •Questions: What health services are available and who has access to Access them? To what extent are these services accessed? to care •Data to display: Measures of access to health services (e.g., cataract surgical coverge) by gender, ethnicity, socioeconomic status and other grounds. Utilisation data disaggregated by gender and other characteristics.

3 •Questions: What are the outcomes and quality of the services and to Quality what extent are quality standards met? Who recieves quality care and who does not? of care •Data to display: Measures of quality (e.g. visual outcome of cataract surgery) by gender, ethnicity, socioeconomic status and other grounds

…to outcomes

Figure 6 Pathway of need assessment to outcome of interventions: A summary of findings of Pakistan National Blindness and Visual Impairment Survey 2001-2003, using a gender lens

From disease burden…

1 • For every 100 blind men, there are at least 137 blind women Burden of • The prevalence of cataract blindnes:1.80% in women vs 1.67 % in men cataract (P<0.001) blindness • In 2003, in Pakistan there were an estimated 120,000 more women (345,000 women vs. 225,000 men) blind due to cataract

• Women were disadvantaged in cataract surgical coverage, irrespective of their area of dwelling, literacy status or age group. 2 • CSC at <3/60, <6/60 and <6/18: Men(persons): 79.6%, 70.1%, 44.6% Access to Women (persons): 74.9%, 68.4%, 42.8% cataract Women (eyes): 58.4%, 50.0%, 38.6% surgery Men (eyes): 64.5%, 54.5%, 42.8% • 76% individuals with cataract blindness or severe visual impairment reported cost as the primary barrier to surgery. Women were 27% more likely to report cost as a barrier.

3 •When women had surgery, they received inferior quality of care compared with men and were less likely to have good/borderline Quality outcome(Odds ratio: 0.72, P <0.05) of cataract •Visual outcome (presenting vision): Good, bordernine, poor surgery Women (n=916 eyes): 26.3%, 38.0%, 35.7% Men (n=857 eyes): 33.5%, 33.1%, 33.4%

…to outcomes

4.7.1 Disease burden

The age-standardised blindness prevalence was higher in women than in men (3.3% vs. 2.4%)—there were 4 blind women for every 3 blind men. The burden of blindness due to cataract, the primary cause of blindness, was significantly higher in women. The prevalence of cataract blindness was 1.80% in women compared with 1.67% in men (P<0.001) which means that, in 2003, in Pakistan there were an estimated 120,000 more women (345,000 women vs. 225,000 men) blind due to cataract. Cataract blindness The age-standardised blindness prevalence was higher in women than in men (3.3% vs. 2.4%)—there were 4 blind women for every 3 blind men. The burden of blindness due to cataract, the primary cause of blindness, was significantly higher in women. The prevalence of cataract blindness was 1.80% in women compared with 1.67% in men (P<0.001) which means that, in 2003, in Pakistan there were an estimated 120,000 more women (345,000 women vs. 225,000 men) blind due to cataract. Cataract blindness increased in both genders up to the age of 50 years with a subsequent greater increase in women.

4.7.2 Access to care

Women were disadvantaged in cataract surgical coverage, irrespective of their area of dwelling, literacy status or age group. The CSC (person) at all three visual acuity cut‐offs of <3/60, <6/60 and <6/18 was lower among women (74.9%, 68.4%, and 42.8%, respectively) than men (79.6%, 70.1% and 44.6%, respectively). As with coverage for persons, coverage for eyes was also significantly lower among women (58.4%, 50.0%, and 38.6%) compared with men (64.5%, 54.5% and 42.8%). Although both women and men reported cost as the main barrier to the uptake of cataract surgery, the proportion was greater for women than for men (77.9% vs. 73.8%). ‘Waiting for cataract to mature’— the second most common barrier—was also more prevalent among women than men (11.1% vs. 6.7%).

4.7.3 Quality of care

With available correction, 241(26.3%) of operated eyes among women had good visual outcome, 348 (38.0%) had borderline, and 327 (35.7%) had poor outcome. In men’s eyes, these values were 287 (33.5%), 284 (33.1%), and 286 (33.4%), respectively. 64 Overall, women were significantly less likely to have good outcome compared with men (RR 0.79,

95% CI, 0.68-0.91; P < 0.001). With best correction, 445 (48.5%) cataract surgeries among women had a good visual outcome, 277 (30.2%) borderline, and 196 (21.4%) poor outcome. In men, these values were 450 (52.1%), 215 (24.9%) and 199 (23.0%), respectively. Rights-based approaches, as opposed to need-based, have a preoccupation with people who are vulnerable to discrimination, aim to unveil the situation of those in greatest need and suggest avenues for action. This rights-based analysis, using the gender lens, reveals evidence of systematic gender inequities in the burden of age-related cataract blindness in Pakistan and the way in which its health systems are responding to it. Such disparities should be addressed. Identifying reasons for these should be a priority for future research. The findings of this analysis are important for several reasons: First, the analysis shows how disaggregation of data by gender can add to the understanding of this problem and suggests avenues for action. The WHO Commission on Social Determinants of Health defines health equity as the absence of systematic differences in health that are avoidable by reasonable action. Measuring and documenting inequity are crucial steps in determining such action. The framework can be used as a resource for advocacy and social mobilisation. Second, the framework is flexible and can be modified to include other contents of the right to health such as availability, acceptability, non-discrimination and participation, as well as the legal and cultural contexts (Figure 7). Moreover, the framework can be applied to not only the leading causes of vision impairment and blindness, but also to other public health problems. It can be used an important tool to examine whether applied to not only the leading causes of vision impairment and blindness, but also to other public health problems. It can be used an important tool to examine whether services (if available) are accessible, affordable, and acceptable to the communities, of high quality, provided on the basis of non-discrimination and involve effective and meaningful participation of the community. Third, it can be used to profile disparities not only by gender but also other grounds of discrimination (alone or in combination) such as race, ethnicity, religion, language, disability and social or regional affiliation of people. Last, the framework can be used to improve the reporting of cross- sectional surveys on vision impairment and blindness such as Rapid Assessment of Avoidable Blindness (RAAB), enabling readers to swiftly understand the magnitude of the

disparities highlighted in the study. In many cases, the data are collected but no algorithm is known to determine which data to report.

Context

Goals •International covenants, treaties and consensus documents signed/ratified by the government •National constitution •Policy •Laws and regulations

Process •Equality/non-discrimination

•Participation Context •Accountability

Contents Context •Availability •Accessibility •Acceptability •Quality

Outcomes •Outcomes of projects •Outcomes of programmes •Outcomes of other activities

Context

Figure 7 Applying a rights-based approach to eye health in fishing communities in Karachi, Pakistan

4.8 Summary points of Chapter 4

. The global burden of low vision and blindness disproportionately affects the poor and vulnerable, especially women, elderly, rural and remote dwellers and those with little to no formal education. 90% of the 285 million people who are either blind or have low vision live in resource poor countries. Much of this vision loss is

avoidable (preventable or curable). Despite significant gains in the last 2 decades, the pace of progress is too slow to achieve the global target of elimination of avoidable blindness by the year 2020. . Eye health, including the availability of effective and accessible cataract detection and surgical services, can be affirmed as a human right on the basis of the right to the highest attainable standard of health (Article 12 of the ICESCR). A number of other human rights are also of particular relevance to eye health, including the rights to non-discrimination and equality, education, an adequate standard of living, food, privacy, life and benefits of scientific progress. . Human rights add value to the need-based health agenda by paying particular attention to the situation of those most vulnerable, including women, marginalised groups, and people living in poverty. Most importantly it focuses attention on the duty bearers – in particular nation states – to address the rights of their citizens. Failure to put human rights into practice through development policies and programmes make populations across the world vulnerable to unnecessary vision loss. . The chapter proposed a conceptual framework for analysing the burden of a given public health problem and the way in which health systems respond to it. The framework, when applied to the situation of age-related cataract blindness in Pakistan, revealed evidence of systematic gender inequities in disease burden, cataract surgical coverage and quality of cataract surgery in the country.

Chapter 5 METHODS

The Karachi Marine Fishing Communities Eye and General Health Survey aimed to examine the prevalence and causes of vision loss, access to eye care services, and outcome of cataract surgery in the marine fishing communities in Karachi and to determine if these key indicators of eye health differed by gender, ethnicity and socioeconomic status (Box 4). This chapter describes and justifies the choice of study population, and the research methods used in this study. Details of the study design, research setting, survey participants, main outcomes and independent variables, data collection process, statistical analysis, and other aspects of methods are presented below; these follow Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines and have been described in our recent publications in Ophthalmic Epidemiology,18 Investigative Ophthalmology and Visual Science,19 and PLOS ONE.201

5.1 Study design

The Karachi Marine Fishing Communities Eye and General Health Survey was a population- based, cross-sectional survey carried out in seven geographic localities in Karachi, predominantly inhabited by the indigenous and non-indigenous marine fishing communities (Figure 8). Cross-sectional or prevalence studies provide a snapshot of the frequency and distribution of a disease (or a health condition) in a specified population at a specified time. Both risk factors and outcome(s) are measured simultaneously. They are particularly useful in informing policy, practice, and decision-making regarding resource allocation.267 From a combined health and human rights perspective, cross-sectional surveys can be most useful in examining disparities in disease burden, health determinants, and access to and quality of health care in a certain population, unveiling

Box 4 The main research questions 1. What is the burden of vision impairment and blindness among adults aged ≥ 50 years in the marine fishing communities in Karachi, Pakistan? Who, within these communities, is most affected? 2. What is the status of access to eye care services and what determines access? What are the self-perceived barriers to the uptake of eye care services, including cataract surgery? 3. What is the acceptability of available eye care services from the users' perspective? 4. What are the quality and outcomes of cataract surgery in these communities?

the situation of those in greatest need and suggesting avenues for action. Cross-sectional surveys are relatively quick and easy to conduct. However, they can be very difficult and expensive in hard-to-reach or mobile populations, such as the population under study, as well as in settings affected by chronic insecurity and armed conflict. Pakistan has been unstable with difficulties associated with routine activity, including service delivery and field research.268,269

Good outcome

Men

Poor outcome

Population sample

Good outcome

Women

Poor outcome

Figure 8 Schematic diagram of the design of the Karachi Marine Fishing Communities Eye and General Health Survey. This cross-sectional study aimed to examine gender, ethnic and SES differences in the burden of vision loss, access to eye care, and cataract surgery outcomes among these communities in Karachi, Pakistan. For simplicity, only one independent variable (sex) and one outcome variable (visual outcome of cataract surgery) are shown.

5.2 Setting

The Karachi Marine Fishing Communities Eye and General Health Survey was undertaken from March 2009 to April 2010 on three islands, Baba, Bhit, and Shams Pir, and four coastal areas, Padar Ground, Kutchi Para, Babri Mosque, and Saddam Chowk (Figure 9). The last two mentioned are located in Machar Colony (literally ‘‘Mosquito Colony’’ in the Urdu language), one of the biggest slums in Karachi, inhabited by Bengali marine fishing communities. These seven areas were selected purposely to enable study of the three major ethnic marine fishing communities residing in Karachi: Kutchi, Bengali, and Sindhi. Common to these sites are high rates of diseases of poverty, and lack of water, sanitation, and other basic services.270,271

Figure 9 A map of the selected localities inhabited by the fishing populations in Karachi, Pakistan

A brief description of the selected is as follows: Baba, Bhit and Shams Pir islands are among the oldest fishing towns in Karachi. Kutchis are the predominant ethnic group on Baba and Bhit islands while Sindhis on Shams Pir Island. All three localities have basic health units, run by the government (Bhit and Shams Pir islands) and drug-maker Merck (Baba Island). Until recently, none of three islands had access to clean potable water.272,273 While men fish, women take care of the home and children. Besides that, a significant proportion of women typically work as housemaids in the nearby affluent areas, Clifton and Defence, to which they commute daily. The housemaids are amongst the lowest paid workers, earning around Pak rupees 3000 (US $ 37) a month. Padar Ground and Kutchi Para are coastal areas, predominantly populated by ethnic Kutchis, and also among the oldest fishing towns in Karachi. They are also amongst the most neglected. Water scarcity is a major health concern. Like Baba and Bhit islands,

men fish while their women work as housewives or as housemaids in the affluent neighbourhoods. Saddam Chowk and Babri Mosque are the two main areas of the Bengali part of Machar Colony, a landfill site, which is the largest of 553 Katchi abadis or illegal squatter settlements in Karachi. The population in these two areas are also associated with marine fishing and shrimp cleaning for the nearby port fisheries. Bengali women and children have a substantial presence in work related to shrimp cleaning, whereas men either fish or work in the neighbouring fisheries as labourers. They speak Bangla (Bengali), a language of the eastern Indo-Aryan branch of the Indo-European languages. In Pakistan, Bengalis continue to be viewed in the light of the 1971 Bangladesh Liberation War and blamed and shamed for having divided Pakistan into two parts. Bengalis are routinely harassed by the police.274 Street crimes, gambling, and drug abuse are common in Machar Colony. Overall, neither Bengalis nor other ethnic groups in the area have adequate access to clean drinking water, sanitation and health services.

5.3 Study participants The study was focused on males and females ≥50 years of age given that worldwide two- thirds of all vision impairment, including blindness, occurs in this age group. Population lists for sampling were developed from a population census as this information is not available routinely (Figure 10). Maps of the selected localities were obtained from their respective administrative Union Councils. Each locality map was divided into clearly demarcated segments, such that each segment had roughly 150 to 250 households. One segment was selected from each locality map randomly using a lottery method and all households in that segment were listed. This sampling method (compact segment sampling) has been used previously in eye surveys in LMICs.49,69 The selected segments had a total of 1319 households which included 1255 people aged ≥50 years. Of these, 700 persons, 100 in each site, were selected randomly using random number generator software (GraphPad Software, Inc., La Jolla, USA) and were invited to participate in the research. Selected participants who were not present during the data collection period were not replaced in the sample.

Selection of seven geographic segments from seven localities inhabited by fishing communities t n e

m Door-to-door enumeration of all people aged ≥ 50 in the selected l o

r geographic segments n E

Random selection of 700 eligible persons; 638 participate. s w e i v r

e Interview regarding socio-demographics, previous eye care use, t n I acceptability of eye care, and self-reported eye problems n o

i Assessment of presenting and best-corrected visual using reduced t a

n logMAR chart i m a x e

e y

E Ascertainment of the main cause of VA > 6/12 in one or both eyes; ophthalmoscopy and slit lamp examination s w e i v r Barriers to surgery interview if VA > 6/12 due to cataract in one or both e t

n eyes; Interview regarding cataract surgery details if operated for cataract I

Figure 10 Schematic diagram of the research plan

5.4 Study variables

5.4.1 Outcome variables

The study had multiple outcome variables, as defined below:

5.4.1.1 Self-reported eye problems

Self-reported eye problems were assessed by using the questions: Do you have any eye or vision problem? And if yes, what is it and its duration?

5.4.1.2 Vision impairment and Blindness, and their causes

Vision impairment was defined as PVA worse than 6/12 but equal to or better than 3/60 in the better eye. Blindness was defined as a PVA worse than 3/60 in the better eye. Cataract was defined as a lenticular opacity of grade 2 or above according to Mehra and Minassian’s275 grading system, which is based on the view of the red reflex. Lens is graded as follows: 0=clear red reflex with no opacity; 1= few small dot opacities which occupy < 1 mm2 maximum area; 2a=lens opacity obscuring less than 50% of red reflex; 2b=lens opacity obscuring more than 50% of the red reflex; 3= lens opacity totally obscuring the red reflex; 4 = pseudoaphakia, aphakia or displaced lens; and 5= unable to assess the red reflex owing to corneal opacity, for instance. Because of ease of use and reliability, the system has been used in national surveys in Pakistan,111 Bangladesh276 and Nigeria.277 Uncorrected refractive error was defined as PVA< 6/12 at presentation improving to 6/12 or better with best correction or pinhole. Participants were asked if they were satisfied with their surgery. Posterior capsule opacification (PCO) was defined as the presence of a thickened posterior capsule in visual axis on slit-lamp examination, causing VA< 6/12. Age-related macular degeneration (ARMD) was diagnosed based on the presence of signs such as drusens, retinal pigment epithelial changes, and subfoveal choroidal neovascularisation. Glaucoma was defined as evidence of glaucomatous damage to the optic-nerve head with or without raised IOP (>21mmHg). Optic neuropathy was defined as the presence of disc swelling or pallor, or relative afferent pupillary defect. Phthisis was defined as a small shrunken globe due to trauma or severe infection. The cause was labelled as amblyopia if BCVA of <6/12 was not attributable directly to any underlying structural abnormality of the eye or visual pathways.

5.4.1.3 Eye care use and barriers to access

Eye care use was elicited by asking ‘‘When was the last time you had an eye examination by an eye doctor?’’ Self-perceived barriers to access were explored by asking those who had reported never having had an eye examination to list the reasons for this.

5.4.1.4 User experiences and acceptability of eye care services

Participants who had an eye examination during the past five years were asked a series of questions about their service encounter experiences. Questions asked to examine user experiences and acceptability of eye care services were originally identified through

piloting and literature review. Participants were asked to provide a “yes” or “no” answer as to whether he/she experienced, during their most recent visit, inconvenience such as: (1) out of turn consultations, with some people registering after you being examined before you; 2) some patients had a more detailed and better examination than you had; 3) you were made to wait for very long; 4) the staff became angry at you or snubbed you; and 5) you were pushed. Participants were asked to mention additional problems in the service encounter, if any. Additional questions asked were: was bribing, sifarish (literally “undue favours/undue influence” in Urdu language) or both prevalent in the health facility you visited? Were you treated with dignity and respect? Did you have difficulty in paying the bills? Next, the overall acceptability of eye care services among the clients was assessed by asking if they intended to visit the same service again or would recommend it to their relatives or friends, if need be. Those who reported either “yes” or “no” were asked to identify the principal reason behind it.

5.4.1.5 Cataract surgical coverage

Cataract surgical coverage (CSC) was defined as the proportion (%) of persons or eyes needing cataract surgery that actually received it.

The formula used to calculate CSC Person was:

(x + y)/(x + y + z)*100 where x = number of persons with cataract surgery in one eye and operable cataract in the other eye, y = number of persons with cataract surgery in both eyes, and z = number of persons with bilateral operable cataract. 278

The formula used to calculate CSC Person Inclusive was:

(x + y)/ (w + x + y + z)*100 where w = number of persons with operable cataract in one eye and no cataract surgery in the other eye.

The formula used to calculate CSC Eyes was:

a / (a + b)*100 where a = number of (pseudo) aphakic eyes and b = number of eyes with operable cataract.278

5.4.1.6 Barriers to cataract surgical services

Barriers to undergoing surgery were explored by asking survey participants with visually significant cataract (VA <6/12) in one or both eyes to list the main reasons why they had not undergone surgery. Answers were noted down verbatim and later grouped into categories.

5.4.1.7 Outcome of cataract surgery

The WHO defines good visual outcome as VA 6/6–6/18 in the operated eye, borderline outcome as <6/18–6/60, and poor outcome as <6/60.62 We have also used this definition. Pupil shape, assessed using direct ophthalmoscopy, was recorded as regular if it was round and irregular if otherwise. Astigmatism was defined as −0.5 D cylinder or more and grouped as: none (<-0.5 D cyl.), mild to moderate (-0.5 to -1.5 D cyl.), severe (> -1.5 to -3.5 D cyl.) and very severe (> -3.5 D cyl). Participants were asked if they were satisfied with their surgery were recorded as “yes”, “no” or bas theek hai (just O.K. in English]. For those who had bilateral cataract surgery, satisfaction was assessed for each eye separately.

5.4.2 Socio-demographic variables

Age of participants was ascertained through the event calendar method (Table 17)279 as many people in the pilot study had failed to satisfactorily answer the question ‘‘How old are you?’’ Participants were asked if they clearly remembered the following events: the

Table 17 Events calendar used to determine age of subjects in 2009 Present age if Present age if born in this aged 15 years in Event Year year this year Pakistan's independence 1947 62 77 Ayub Khan's martial law 1958 51 66 Pakistan's first war with India 1965 44 59 Pakistan's latest (second) war with India 1971 38 53 Bangladesh independence 1971 38 53 Hanging of prime minister Zulfikar Ali Bhutto 1979 30 45 Assassination of President General Zia-ul-Haq 1988 21 36 creation of Pakistan (1947), the first (1965) and second (1971) wars between Pakistan and India, the creation of Bangladesh (1971), or the execution of Prime Minister Zulfikar

Ali Bhutto (1979). If yes, they were asked how old they were when that particular event happened. Ethnicity, defined as Kutchi, Sindhi, Bengali, Barmi, Mohajir (Urdu-speaking), or other, was ascertained by the question: ‘‘What is your qaomiat (ethnicity)’’? Measures of socioeconomic status (SES) included self-reported education level, occupation, household income, and self-reported financial status of the household. Education, income, and occupation (or their composite) are the widely used indicators of socioeconomic status (SES). There were several challenges when selecting indicators for the assessment of SES. First, the selected communities had some of the lowest rates of literacy. Second, there was not much anticipated variation with regard to occupation in the clusters as majority of the inhabitants were associated with the fishing profession. Third, SES based on the frequency of red meat or chicken consumption was included in the questionnaire, but was not used for analysis as the inhabitants in the fishing communities preferred eating fish to chicken or red meat. Self-reported financial status of the household was examined by asking survey participants about their household financial status. Their responses to this open-ended question were grouped into the following categories groups: fine, can just make both ends meet, poor/weak, very poor/very weak, alternating between getting food and not getting food, unpredictable livelihood—sometimes you get it, sometime you do not, no savings, need to work daily to earn enough to make a livelihood, derives livelihood from charity/zakat. For the present analyses, these response categories were grouped as: “fine” and “poor/fragile.” Participants also were asked about their monthly household expenses and savings, if any. The two were added to calculate the monthly income. The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pakistan rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

5.5 Informed consent and ethics approval

Study procedures were explained to eligible individuals and their informed verbal consent was obtained before participation. Written consent could not be taken because of the very low literacy rate in the selected population. An independent witness attested that the “Participant Information Statement has been read to and understood by the study

participant”. Permission to conduct this research was obtained from the Federal Ministry of Health, Islamabad, and City District Government, Karachi. Ethical approval for the research was obtained from the Human Research Ethics Committee of The University of New South Wales (HREC 08181). This study adhered to the tenets of the Declaration of Helsinki. In those participants in whom eye disease was diagnosed, referrals and care was provided through the not-for-profit Adamjee Eye Hospital, Karachi.

5.6 Training and data collection process The study protocol was standardised prior to implementation. This included training for the assessment team and piloting (n=46). Training and technical assistance was provided by a certified trainer for population-based eye surveys and the coordinator of Pakistan National Blindness and Visual Impairment Survey (Dr. Zahid Jadoon). Our survey team comprised a study coordinator (interviews and managing study team), supervisor (managing equipment and supplies), refractionist (visual acuity measurements), ophthalmologist (eye examination), two local female workers (recruitment, translation where necessary, and assistance in vision testing), two local guides/social workers (community participation and household identification), and an ophthalmic technician (coordinating eye care). The same team travelled to each site and performed the same roles, using the same protocol. The level of training of the survey team was: 1) Refractionist: 6 months diploma in refraction with 2 years job experience 2) Ophthalmic technician: One-year diploma with 2 years related experience in a tertiary care hospital 3) Ophthalmologist: 4 years residency in general ophthalmology with 2 years post-fellowship experience in a tertiary eye care hospital 4) Epidemiologist: 2 years Masters in epidemiology and biostatistics with 10 years research-related experience. Next, a central survey workstation was established in each of the seven survey sites where interviews and eye examination were held: Baba Island (Office of Union Council), Bhit Island (a religious school), Padar Ground (a community center), Kutchi Para (a community center), Babri Mosque (the headquarters of a political party), and Saddam Chowk and Shams Pir Island (the headquarters of local fishermen). After informed consent was obtained, participants were interviewed and examined. Interviews were conducted by the principal investigator (KA) in Urdu language, in the presence of a local female interpreter, in a private area. All data were recorded on a survey instrument

specifically designed for this survey. The survey instrument had been designed in English, translated and back translated in Urdu and tested before wider use. Briefly, it had three main parts: The first part included questions concerning the socio-demographic aspects (e.g., age, sex, ethnicity, marital status, schooling, occupation, self-rated financial status, and income), self-reported eye problems and their duration, eye care use and barriers to care, and users’ experiences of eye care. The second part required the survey refractionist and ophthalmologist to conduct eye examination and record their findings in the eye examination section of the record. Participants underwent auto-refraction using Unicos URK-700 autorefractor keratometer (UNICOS, Seoul, South Korea). This was followed by assessment of presenting vision (i.e. unaided or with glasses for distance, if normally worn) and best corrected VA using standardised protocols. The Reduced LogMAR chart was used to assess visual acuity because it is considered more accurate than Snellen’s chart, as was done in a number of recent methodologically rigorous population-based surveys undertaken in LMICs including Pakistan.111,276,277 We used the chart, with ‘E’ optotypes because of the anticipated very low rates of familiarity with Roman alphabets in the survey areas due to low literacy. Visual acuity was measured in a shaded area in the examination site. All measurements were done in daylight. A trained refractionist recorded if the participant arrived in centre with distance glasses or usually wore distance glasses but had forgotten to bring them. Participants were also asked if they used reading glasses. The LogMAR chart was fixed on the wall 1 meter above the ground. Study participants sat on a stool at 4 meters and one of the lady workers pointed out the “Es” on the chart in turn from the top while the refractionist counted the number correctly identified, using a counter. Testing stopped if all 3 “Es” in a row were not correctly identified. If a participant was unable to read any letters or read only one letter with one or both eyes at 4 meters, the VA was tested at 1 meter. Participants who could not see any letter at 1 meter were assessed for finger counting and hand movements. Light perception (PL/NPL) was tested in a darkened room. Next, the cause of vision impairment were assessed. Cataract was graded according to Mehra and Minassian’s275 method for grading central lens opacities. A direct ophthalmoscope was set at +2 D to view the lens at 1/3 meter, 25◦ temporal to the visual axis. Based on the view of the red reflex, lens was graded. Each subject underwent a slit- lamp examination. Those who reported diabetes or whose vision was <6/12 in either eye

not attributable to cataract, refractive error, or several other identifiable causes, underwent dilated posterior segment examination. The fundus was examined with the slit lamp using a + 90 D lens. The main cause of PVA<6/12 in each eye and for the person was recorded. Intraocular pressure was measured using Goldmann applanation tonometer. Finally, the last part of the survey asked respondents with visually significant cataract (VA <6/12) an open ended question regarding reasons for not having had cataract surgery. Answers were noted down verbatim and later grouped into meaningful categories. Next, all those who had cataract surgery in the past were asked to respond to a closed-ended question on whether they were satisfied with their surgery.

5.7 Sample size As mentioned earlier, this study had multiple outcomes of interest. In 2008-2009, when the study was designed, no population-based data were available in literature regarding the key eye health indicators in fishing communities in LMICs including Pakistan. When we were deciding on the study size, an important consideration was the feasibility of this study, especially with regard to the hard-to-reach nature of the marine fishing populations, with fishermen being away from home for lengthy periods as well as the prevailing adverse security situation in Karachi. We aimed for 700 persons as we thought this study size would be adequate to provide reasonably precise estimates of vision loss (PVA <6/12 in the better eye), visual outcomes of cataract surgery, and most other eye health measures under examination. We estimated that with a sample size of 287 in each group (men and women), the study would have at least 80% power to detect an odds ratio of 1.6 or greater for significant vision loss (PVA <6/12 in the better eye) for women compared with men (anticipated proportion of significant vision loss among men = 46%), at a two-sided alpha level of 0.05. After adjusting for an anticipated non-response rate of 15%, the final sample size was 330 in each group. The hypothesis that women were more likely to have a significant vision loss than men was based on the findings of Pakistan National Blindness and Visual Impairment Survey.107 The study found that 46% men aged ≥ 50 years had PVA < 6/12 in the better eye compared with 56% women of the same age. We assumed this sample size would yield approximately 120 cataract operated eyes (60 each in men and women) which would be sufficient to detect a 25% difference in the proportions of good visual outcome between the two sexes—26.3% in women’s eyes 64

and 51.3% in men’s eyes, with an 80% power and alpha of 0.05. The hypothesis that women were less likely to have a good visual outcome (PVA ≥ 6/18) after cataract surgery than men was also based on the findings of Pakistan National Blindness and Visual Impairment Survey.64 The study found that 33.5% of the operated eyes among men had good visual outcome compared with 26.3% operated eyes among women. These sample size determinations were made using Power Analysis and Sample Size (PASS) software version 2008 (NCSS, Kaysville, UT, USA).

5.8 Statistical methods All data were entered in Microsoft Access (Microsoft Corporation, Redmond, WA, USA) databases by 2 trained data entry operators independently of each other. The 2 data files were compared in FoxPro (Microsoft Corporation) and inconsistencies in data entry edited by consulting the original data. Next, data were checked against 10% of the original forms to verify quality. Data were analysed using SPSS for Windows version 19.0 (IBM SPSS, Inc., Chicago, IL, USA). For the present analysis, age was categorised into 3 groups: 50 to 59, 60 to 69, and ≥ 70 years, and, for some, into two: 50 to 59 and ≥ 60 years. Responses to the open-ended question regarding self-reported financial status of the household enabled grouping into 2 categories: ‘‘fine’’ and ‘‘poor/fragile.’’ Per capita income was calculated by dividing total household income by the number of people living in the household and structured into quartiles to create 4 groups of near-equal size. For ease of comparison, information on income in Pakistan Rupees was converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan rupees). For some of the analysis, income was categorised into 2 groups: ≤ 0.52 and ≥ 0.53 US dollars. Descriptive statistics, including mean, median and SD for continuous variables and proportions for categorical variables, were calculated. As mentioned earlier, this study focused on multiple domains of eye health. Statistical analysis for each one of them is described below.

5.8.1 Self-reported eye problems

The overall and subgroup prevalence of having one or more eye symptoms/problems (self-reported) was computed. Eye problems/symptoms were listed and grouped into vision-related problems, dry/red eyes, and other eye conditions. A further analysis was done to examine if there were differences in the prevalence of eye symptoms/problems

between those who had undergone cataract surgery in one or both eyes and those who had not. In addition, a multivariable logistic-regression analysis was performed to identify factors associated with the presence of one or more eye symptoms/problems. Covariates examined included age, gender, ethnicity, education, daily per capita income of the household, self-reported financial status of the household, and work status. Covariates with P ≤ 0.2 in the bivariate analysis were evaluated in the multivariable analysis, statistical significance for which was set at P < 0.05.

5.8.2 The prevalence and causes of vision impairment blindness

Visual acuity scores were converted into standardised categories: no vision impairment (PVA ≥ 6/12), mild vision impairment (<6/12–6/18), moderate vision impairment (<6/18–6/60), severe vision impairment (<6/60-3/60), blindness 1 (<3/60–1/6), blindness 2 (<1/60–light perception), and blindness 3 (no light perception). The overall and subgroup crude and age-standardized prevalence of vision loss were computed. Data on vision loss was standardised to the 2000 World Standard Population, using direct method, which allows for reliable comparison within groups, and with other studies. Direct standardisation of the rates observed to the total population aged ≥ 50 years in the fishing communities in Keamari was not possible because there is no information on the age-structure or the size of fishing populations in the country. A multivariable analysis was performed to identify factors associated with significant vision loss (PVA < 6/12 in the better eye) among survey participants (n = 638). Covariates examined were age, sex, ethnicity, education, work status, self-reported financial status of the household, and daily per capita income of the household. Covariates with P ≤ 0.2 in the bivariate analysis were evaluated in the multivariable binary regression analysis, statistical significance for which was set at P < 0.05. Next, frequencies and proportions of causes of significant vision loss were computed.

5.8.3 Eye care utilisation

The proportions of people who had seen an eye doctor within the last 12 months, last 2 years, and last 5 years and those who had never seen an eye doctor were computed. Percentages for eye care utilisation and their 95% confidence intervals (CI) were calculated for the total study population, for men and women separately, for different age categories, for ethnic and socioeconomic groups and for different levels of vision impairment. For uni- and multivariable binary logistic regression analysis, the outcome 98

variable was dichotomised into “ever” versus “never examined” by an eye doctor. Covariates with P ≤0.2 in the univariate analysis were evaluated in the multivariable analysis, statistical significance for which was set at P < 0.05.

5.8.4 Self-perceived barriers to eye care

Content analysis was performed to classify responses into thematic categories concerning self-perceived barriers. These included perceived lack of need, financial hardships, ‘‘fears,’’ social support constraints, co-existing health problems, health seeking behaviour/belief problems, lack of information about the location of available services, geographic access issues, distrust in health systems, and ‘‘cultural’’ issues. Because each respondent could cite more than one barrier, the multiple response function in SPSS was used to compute frequencies and percentages for each response category for gender, ethnicity, and socioeconomic status. These proportions were compared across subgroups using the chi- square or Fisher’s exact test, as appropriate. Further analysis examined evidence of eye problems, vision impairment, and blindness among those with perceived lack of need for an eye examination (n =160) relative to those who mentioned other reasons (n = 173). Subsequently, a multiple logistic regression analysis was performed to identify factors independently associated with perceived lack of need for an eye examination (yes/no) among individuals who reported not having had an eye examination in the past (n = 333). Covariates with P ≤ 0.2 in the univariate analysis were selected for the multivariable analysis, statistical significance for which was set at P < 0.05.

5.8.5 User experiences and acceptability of eye care services

Content analysis was performed to classify responses into thematic categories concerning reasons behind acceptability and unacceptability of eye care services. Reasons behind acceptability that emerged included effectiveness of care, good communication, financial accessibility, geographic accessibility, timeliness of assistance, non-discrimination in care, and cleanliness. Reasons behind unacceptability that emerged included financial inaccessibility, ineffective eye care, “fears,” delayed assistance, inadequate special support services, poor communication by staff, and geographic inaccessibility.

Further analysis was performed to identify factors associated with unacceptability of eye care among survey participants (n=218). Covariates examined in relation to

unacceptability were: age at the last visit, sex, ethnicity, self-reported financial status of the household, daily per capita income of the household, work status, reason for visit and type of facility visited. Covariates with P ≤ 0.2 in the bivariate analysis were evaluated in the multivariable analysis, statistical significance for which was set at P < 0.05.

5.8.6 Cataract surgical coverage

Overall and group-specific CSC and their 95% CIs were computed for VA thresholds <3/60, <6/60, <6/18, and <6/12. As mentioned earlier, CSC Person was computed using formula: (x + y)/ (x + y + z)*100 where x = number of persons with cataract surgery in one eye and operable cataract in the other eye, y = number of persons with cataract surgery in both eyes, and z = number of persons with bilateral operable cataract). CSC Person Inclusive was computed using formula: (x + y)/ (w + x + y + z)*100, where w = number of persons with operable cataract in one eye and no cataract surgery in the other eye while x, y, and z were defined as in CSC Person. CSC Eyes was computed using formula: a/ (a + b)*100 where a = (pseudo) aphakic eyes and b = eyes with operable cataract).

5.8.7 Barriers to cataract surgical services

Thematic categories were developed using content analysis methods to classify responses concerning self-perceived barriers to cataract surgery among those with significant vision loss in one or both eyes due to cataract. These included being unaware of cataract, financial hardships, perceived lack of need, ‘‘fears,’’ distrust in health systems, co-existing health problems, health seeking behaviour/belief problems, social support constraints, waiting for the cataract to “ripen”, “cultural” issues, and geographic access issues. Frequencies and percentages were computed for each response category for gender, ethnicity, and socioeconomic status. These proportions were compared across subgroups using the chi-square or Fisher’s exact test, as appropriate.

5.8.8 Outcome of cataract surgery

Simple frequencies and proportions were calculated to describe categorical variables. Gender differences in age at the time of surgery were compared using a two-sample independent t-test. Chi-square or Fisher’s exact test (2-tailed) was used to compare proportions (e.g., type of health facility in which cataract surgery had been performed, the rate of intraocular lens [IOL] surgery, and astigmatism) between men and women, and across other subgroups. 100

Generalized estimating equations (GEE) for binary outcomes were used to identify factors associated with 3 indicators of quality of cataract surgery: suboptimal visual outcome (PVA <6/18), dissatisfaction with cataract surgery, and irregular pupil. A substantial number of surgeries were bilateral (n=48). GEE were used to overcome the problem of correlated data. Covariates examined in relation to suboptimal visual outcome (PVA <6/18) were: current age (years), sex, ethnicity, self-reported financial status of the household, daily per capita income of the household, time since surgery, and IOL surgery. Covariates examined in relation to dissatisfaction were: age, sex, ethnicity, visual outcome of cataract surgery, self-reported financial status of the household, daily per capita income of the household, time since surgery, and IOL surgery. Covariates examined in relation to pupil shape were: current age, sex, ethnicity, self-reported financial status of the household, daily per capita income of the household, time since surgery, IOL surgery, and visual outcome. Covariates with P ≤ 0.2 in the bivariate analysis were evaluated in the multivariable analysis, statistical significance for which was set at P < 0.05.

5.9 Summary points of Chapter 5 . The Karachi Marine Fishing Communities Eye and General Health Survey was a door-to-door, cross-sectional survey conducted between March 2009 and April 2010 in fishing communities living on three islands and in four coastal areas in Keamari, Karachi, located on the coast of the Arabian Sea. . A sample of 638 adults aged ≥ 50 years was interviewed and examined. A structured questionnaire was used to collect data on socio-demographics and multiple eye health indicators including vision loss and its causes, access to eye care services, cataract surgical coverage, and outcome of cataract surgery. Eye examination included standardised assessments of presenting and best-corrected VA (with a Reduced logMAR ‘E’ chart), slit lamp biomicroscopy and dilated fundoscopy. . Data were analysed using SPSS for Windows version 19.0 (IBM SPSS Inc., Chicago, IL, USA) and Stata 10.1 (Stata Corporation, College Station, TX, USA). Multivariable analyses were performed to examine how gender, ethnicity and socioeconomic status were related to the presence of vision loss, eye care utilisation, acceptability of eye care and outcome of cataract surgery. Cataract surgical coverage was calculated separately for each gender, ethnic and socioeconomic groups.

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Chapter 6 RESULTS

This chapter reports the results of The Karachi Marine Fishing Communities Eye and General Health Survey (n=638) that mainly aimed to examine the prevalence and causes of vision loss, access to eye care services, and outcome of cataract surgery in the marine fishing communities in Karachi and to determine if these key indicators of eye health differ by gender, ethnicity and socioeconomic status (Box 5). This chapter is organised into the following 6 sections (Figure 11) using the pathway from need assessment, to care (received or not) to outcome (good or not). Section 6.1 provides details of the socio-demographic and socioeconomic characteristics of the populations surveyed. Section 6.2 presents data on the burden of self-reported eye problems, and on the burden and causes of vision impairment and blindness. The next section, Section 6.3 details availability, accessibility and acceptability of eye care services. Section 6.4 illustrates cataract surgical coverage and self-perceived barriers to cataract surgery. Section 6.5 presents data on the outcome of cataract surgical interventions, including visual outcome, astigmatism and patients’ satisfaction. Section 6.6 provides a summary of the chapter.

Box 5 The main research questions 1. What is the burden of vision impairment and blindness among adults aged ≥ 50 years in the marine fishing communities in Karachi, Pakistan? Who, within these communities, is most affected? 2. What is the status of access to eye care services and what determines access? What are the self-perceived barriers to the uptake of eye care services, including cataract surgery? 3. What is the acceptability of available eye care services from the users' perspective? 4. What are the quality and outcomes of cataract surgery in these communities?

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Figure 11 Pathway of need assessment to outcome of interventions

From blindness to Burden and causes of blindness and vision impairment by gender, ethnicity and 1. Disease burden socioeconomic status (Section 6.2; Table 20 through Table 26)

Prevalence of accessibility to eye care 2. Access to eye care services by gender, ethnicity and services socioeconomic status (Section 6.3; Table 27 through Table 42)

Cataract surgical coverage (person, eyes), by 3. Cataract surgical gender, ethnicity and socioeconomic status coverage (Section 6.4; Table 43 through Table 48)

Prevalence of visual outcomes (good, borderline and poor) and satisfaction with surgery by gender, ethnicity and 4. Outcome of socioeconomic status. cataract surgery Prevalence of astigmatism and irregularity of pupil by gender (Section 6.5; Table 49 through Table 56) Recovery after surgery.

6.1 Characteristics of survey participants

6.1.1 Response rate

Of 700 people planned to be included in the study, 638 (91.1%) were interviewed and examined (Table 18). Reasons for non-participation included being away from home (n = 45), refusals (n = 16), and mental illness (n = 1). Among those unavailable, the majority (57.8% or 26/45) were men. All non-participants were 'believed not blind’ based on the data obtained on their vision status (either believed not blind or believed blind) by observation or from the information provided by family members or neighbours. The age and sex distribution of individuals who did not participate in the survey did not differ significantly from those who participated. Of study participants, 314 (49.2%) were men

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and 324 (50.8%) women; 304 (47.6 %) were ethnic Kutchis, 168 (26.3 %) Bengali, 127 (19.9%) Sindhis, and 39(6.1%) Others.

6.1.2 Age, sex and marital status

Of the 638 individuals enrolled in the study, 314 (49.2%) were men and 324 (50.8%) were women. 347 (54.4%) were 50–59, 178 (27.9%) 60–69, and 113 (17.7%) ≥ 70 years of age. Women participants tended to be slightly younger than men (median ages: 55 years vs. versus 58.5 years). However, this difference was not statistically significant (P=0.015 by Mann-Whitney U test). More than two-thirds (71% or 453/638) of the participants were currently married, 174 (27.3%) widowed/separated/divorcee and 11 (1.7%) never married (Table 18). There were approximately four widows for every one widower in the sample—130/324 (40.1%) compared with 36/314 (11.6%; P < 0.001).

6.1.3 Occupation

Most participants belonged to small-scale marine fishing families. 82.2% were economically active, 10.3% were retired/did not do any work while another 7.5% reported not being able to work. Among the economically active men (n=236), fishing was the most common occupation—56.4% were marine fishermen while another 3.8% worked as labourer in the nearby fishery or other fish processing avenues. Among the economically active women (n=288), about two-thirds (187 or 64.9%) were housewives while the remaining, in addition to being housewives, worked as housemaids in the neighbouring affluent towns, labourers in fish processing, especially prawn cleaning or did embroidery work. Nearly half of Bengali women (34/76 or 44.7%) worked in prawn cleaning. In the sample, there was a faith healer, a hakeem (a practitioner of herbal medicine) and two social workers or politicians.

6.1.4 Education level

Overall, 84.3% had no formal school-based education while only 30 (4.7%) had completed primary, 17 (2.7%) middle and only 4 (0.7%) secondary or higher secondary education (Tables 18 and 19). A significantly greater proportion of women than men had no education (94.1% vs. 74.2%; P < 0.001). 82.9% Kutchi, 88.7% Bengali and 90.6% Sindhi respondents had no formal school-based education. However, these proportions did not differ from each other significantly (P=0.072).

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6.1.5 Household income

The mean (± SD) daily per capita income of the households to which the respondents belonged was low ($ 0.68 ± 0.65). While there were no significant gender differences in the daily per capita income of the household, there were significant income differentials by ethnicity (P < 0.001 by ANOVA). The mean daily per capita incomes of Kutchis ($0.60 ± 0.39) and Bengalis ($ 0.61± 0.59) were comparable but were significantly lower than that of Sindhis ($0.96± 1.06). The median (IQR) daily per capita income of the households was 0.52(0.40). There were significant differences in the distribution of per capita incomes of Bengalis ($ 0.47[0.36]), Kutchis ($ 0.52[0.33]), and Sindhis ($ 0.68[0.61]) (P<0.001 by the Kruskal–Wallis test). Overall, 93.9% (95% CI, 91.7–95.6) participants lived in extreme poverty (

6.1.6 Self-reported financial status of the household

Overall, 80.7% participants reported their household financial status as “poor/fragile” (Tables 18 and 19). There was no significant difference in self-reported financial status of the household between men and women (P =0.371). However, a higher proportion of women reported living on charity/ Zakat than did men. There were significant ethnic differentials in the self-reported financial status of the household (P<0.001) with a higher proportion of Bengalis (87.5%) reporting their household financial status as “poor/fragile” compared with Kutchis (83.9%) and Sindhis (66.1%). To assess the correlation between self-rated financial status of the household and levels of daily per capita income of the household, the Kendall (tau-b) rank-order correlation was computed. The analysis revealed that the two measures of socioeconomic status were significantly, but not strongly, correlated (Kendall's tau-b value = -0.184; P<0.001).

6.1.7 House ownership

Overall, 92.8% (592/638) participants reported living in a house they owned (Table 19). 5.3% lived in rental housing, and about 2% lived in someone else's household (data not shown in the tables). Ethnicity was significantly (P<0.01) associated with house

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ownership (yes/no); among those living in rental housing, nearly half (16 of 34) were ethnic Bengalis.

6.1.8 Household crowding

The majority of study participants lived in overcrowded households (median: 8 members, range: 1 to 32 members; Table 19). The median number of persons per household for all three major ethnic groups (Kutchi, Bengali and Sindhi) was virtually identical (n=8) while the mean (±SD) value was the highest for 9.18 (± 5.08) for Sindhis followed by 8.82 (±4.58) for Bengalis and 8.30 (±4.22) for Kutchis. A quartile analysis was performed in which study participants were divided into four groups according to the number of members per household. 144 households (22.6%) had 5 or fewer members, 136 (21.3%) had 6–7 members, 198 (31.0%) had 8–10 members while 160 (25.1%) were large households with 11 or more members. Although there were ethnic differences in the household size, these differences (P = 0.066) as well as those by sex (P = 0.166) did not reach statistical significance.

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Table 18 Demographic and socioeconomic characteristics of survey participants (n=638) by gender

Male Female All n=314 n=324 n=638 Characteristic Freq % Freq % Freq % Age group, y 50–59 159 50.6 188 58.0 347 54.4 60–69 96 30.6 82 25.3 178 27.9 ≥ 70 59 18.8 54 16.7 [27.9]113 17.7 Marital status Married 271 86.3 182 56.2 453 71.0 Widowed/separated/divorcee 39 12.4 135 41.7 174 27.3 Never married 4 1.3 7 2.2 11 1.7 Ethnicity* Kutchi 133 42.4 171 52.8 304 47.6 Bengali 92 29.3 76 23.5 168 26.3 Sindhi 68 21.7 59 18.2 127 19.9 Others 21 6.7 18 5.6 39 6.1 Work status Marine fishing 133 42.4 0 .0 133 20.8 Other occupation 103 32.8 101 31.2 204 32.0 “Housewife” 0 .0 187 57.7 187 29.3 Retired/do not do any work 53 16.9 13 4.0 66 10.3 Unable to do any work 25 8.0 23 7.1 48 7.5 Education† None 233 74.2 305 94.1 538 84.3 Any 81 25.8 19 5.9 100 15.7 Less than primary 37 11.8 12 3.7 49 7.7 Primary [11.825 8.0 [3.75 1.5 30 4.7 Middle 16 5.1 1 0.3 17 2.7 Secondary/higher secondary [5.13 0.9 1 0.3 4 0.7 * Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns, and 2 Punjabis. † Any education included one or more years of school-based education.

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Table 18 (Continued) Demographic and socioeconomic characteristics of survey participants (n=638) by gender Male Female All n=314 n=324 n=638 Characteristic Freq % Freq % Freq % Self-reported financial status of the household‡ “Fine” 65 20.7 58 17.9 123 19.3 “Poor/Fragile” 249 79.3 266 82.1 515 80.7 Can just make both ends meet 93 29.6 93 28.7 186 29.2 Poor/weak 66 21.0 70 21.6 136 21.3 Very poor/very weak 33 10.5 49 15.1 82 12.9 Alternating between getting food and not 16 5.1 28 8.6 44 6.9 getting food Unpredictable source of income—sometimes 16 5.1 12 3.7 28 4.4 you get it, sometimes you do not No savings 13 4.1 4 1.2 17 2.7 Need to work daily to earn enough to make a 11 3.5 5 1.5 16 2.5 livelihood Derives livelihood from charity/zakat 1 0.3 5 1.5 6 0.9 Daily per capita income of the household, US dollars§ ≤ 0.36 80 25.5 72 22.2 152 23.8 0.37–0.52 89 28.3 79 24.4 168 26.3 0.53–0.77 75 23.9 84 25.9 159 24.9 ≥ 0.78 70 22.3 89 27.5 159 24.9 ‡Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” and “poor/fragile.” §The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pakistan rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 19 Socioeconomic characteristics of survey participants (n= 638) by ethnicity Ethnicity Kutchi Bengali Sindhi Others* Total n=304 n=168 n=127 n=39 n=638 Characteristic Freq % Freq % Freq % Freq % Freq % Work status Marine fishing 53 17.4 25 14.9 53 41.7 2 5.1 133 20.8 Other occupation 74 24.3 93 55.4 22 17.3 15 38.5 204 32.0 “Housewife” 114 37.5 23 13.7 39 30.7 11 28.2 187 29.3 Retired/do not do any 42 13.8 7 4.2 8 6.3 9 23.1 66 10.3 work Unable to do any work 21 6.9 20 11.9 5 3.9 2 5.1 48 7.5 Education† None 252 82.9 149 88.7 115 90.6 22 56.4 538 84.3 Any 52 17.1 19 11.3 12 9.4 17 43.6 100 15.7 Less than primary 28 9.2 11 6.5 6 4.7 4 10.3 49 7.7 Primary 14 4.6 6 3.6 3 2.4 7 17.9 30 4.7 Middle 8 2.6 2 1.2 3 2.4 4 10.3 17 2.7 Secondary/higher 2 0.7 0 0 0 0 2 5.2 4 0.7 secondary Self-reported financial status of the household ‡ “Fine” 49 16.1 21 12.5 43 33.9 10 25.6 123 19.3 “Poor/fragile” 255 83.9 147 87.5 84 66.1 29 74.4 515 80.7 House ownership Yes 290 95.4 150 89.3 121 95.3 31 79.5 592 92.8 No 14 4.6 18 10.7 6 4.7 8 20.5 46 7.2 * Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns, and 2 Punjabis. † Any education included one or more years of school-based education. ‡ Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” and “poor/fragile.”

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Table 19 (continued) Socioeconomic characteristics of survey participants (n= 638) by ethnicity Ethnicity Kutchi Bengali Sindhi Others* Total n= 304 n= 168 n= 127 n= 39 n= 638 Characteristic Freq % Freq % Freq % Freq % Freq % Population living in poverty§ Yes 294 96.7 162 96.4 106 83.5 37 94.9 599 93.9 No 10 3.3 6 3.6 21 16.5 2 5.1 39 6.1 Daily per capita income of the household, US dollars¶ ≤ 0.36 72 23.7 53 31.5 15 11.8 12 30.8 152 23.8 0.37–0.52 82 27.0 51 30.4 29 22.8 6 15.4 168 26.3 0.53–0.77 91 29.9 30 17.9 31 24.4 7 17.9 159 24.9 ≥ 0.78 59 19.4 34 20.2 52 40.9 14 35.9 159 24.9 House ownership Yes 290 95.4 150 89.3 121 95.3 31 79.5 592 92.8 No 14 4.6 18 10.7 6 4.7 8 20.5 46 7.2 Number of household members ≤ 5 75 24.7 33 19.6 32 25.2 4 10.3 144 22.6 6–7 74 24.3 32 19.0 20 15.7 10 25.6 136 21.3 8–10 80 26.3 65 38.7 42 33.1 11 28.2 198 31.0 ≥ 11 75 24.7 38 22.6 33 26.0 14 35.9 160 25.1 *Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns, and 2 Punjabis. §Poverty is defined as the percentage of population living on less than $1.25 per day. The former international poverty line was less than $1.00 per day. ¶The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pakistan rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan rupees).

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6.2 Eye problems (self-reported), vision impairment and blindness

6.2.1 Self-reported eye problems

Overall, 79.5% (or 507/638) participants reported having one or more eye symptoms/problems (Table 20). 369 (57.8%) reported one, 115 (18.0%) two, 18 (2.8%) three, and 5 (0.8%) four or more eye symptoms/problems. The proportion of those who reported having had one or more eye symptoms/problems was significantly higher among women than men (84.3% vs. 74.5%; P= 0.003) and among individuals with “poor/fragile” self-rated financial status of the household compared with those with “fine” one (81.6% vs. 70.7%; P=0.008). Variation in the prevalence of self-reported eye problems/symptoms by increasing age, ethnicity, daily per capita income of the household, education, and work status was not significant. In a multivariable logistic-regression analysis also, gender and financial status of the household were significantly associated with the presence of one or more eye symptoms/problems. Women compared with men were substantially more likely to have one or more eye problems/symptoms (adjusted OR 1.81, 95% CI 1.22–2.68, P=0.003) as were individuals with “poor/fragile” self-reported financial status of the household compared with those with “fine” one (adjusted OR 1.80, 95% CI 1.15–2.82, P=0.011). Table 21 lists the prevalence of self-reported eye problems/symptoms among survey participants. Near-vision problems were the most prevalent, occurring in 33.5% (or 214 of 638) participants, followed by distance vision problems (16.0%), cloudy vision (14.3%), difficulty recognising faces/bus numbers (5.3%), and trouble with night vision (5.2%). 12 (1.9%) respondents reported having total loss of vision in one eye (unoperated one) while 9 (1.4%) reported total loss of vision in both eyes (unoperated ones). A total of 13 (2%) participants reported having reduced vision in the operated eye while 8 (1.3%) reported total loss of vision in the operated eye. A significant proportion of participants reported having non-vision-impairing conditions such as watering eyes (10.2% or 65/638), burning eyes (3.4%), itchy eyes (3.4%), painful eyes (2%) and scratchy eyes (1.1%). 5 (0.8%) individuals reported having cataract, 3 (0.5%) reported having fleshy growth in the eye, and one each (0.2%) reported having glaucoma, diabetic eye disease and drooping eyelids. The prevalence of self- reported eye symptoms/problems did not differ significantly by sex, except for cloudy vision, trouble with night vision, headaches from vision problems. Women were 3.1 times

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more likely than men to report having reduced vision in the operated eye but this difference did not reach statistical significance (P = 0.09). A further analysis was done to examine if there were differences in the prevalence of eye symptoms/problems between those who had undergone cataract surgery in one or both eyes and those who had not (Table 22). The analyses revealed that those who had undergone cataract surgery had a significantly higher prevalence of watering eyes (P<0.05) and a total loss of vision in one unoperated eye (P<0.05), but a lower prevalence of reduced near vision problems (P<0.001) than their reference group.

6.2.2 The prevalence of vision impairment and blindness

Tables 23 and 24 present crude and age-standardised prevalence of vision loss in this population. The age-standardised prevalence of mild VI was 15.1 % (95% CI, 12.2%- 17.9%), MSVI 23.2 % (19.8%-26.5%), and blindness 2.8% (1.4%-4.2%). There were marked gender disparities in vision loss in this population; 54% of all mild VI, 61 % MSVI and 81 % of all blindness occurred among women. The burden of mild VI, MSVI and blindness was substantially greater among those 70 years of age or older than those 50-69 years of age. There were also marked disparities by financial status of the household with those self-reporting their household financial status as “poor” having a two-fold higher age-standardised prevalence of MSVI and three fold higher prevalence of blindness than their counterparts with “fine” one. While both Kutchis and Bengalis had a higher age- standardized prevalence of MSVI or blindness than Sindhis, disparities by ethnicity were not statistically significant. As shown in Table 25, a multivariable analysis was performed to identify factors associated with significant vision loss (presenting visual acuity <6/12 in the better eye on presentation) among survey participants (n = 638). The analysis revealed strong association between gender and vision loss, with women being 2.43 times more likely than men to have significant vision loss (aOR 2.43, 95% CI 1.69–3.51), while adjusting for the effect of age, work status, financial status of the household and daily per capita income of the household. As expected, the likelihood of having significant vision loss increased with increasing age (P<0.001), with the highest being in people aged ≥ 70 years (aOR 4.22, 95% CI 2.56-6.96). Individuals who reported inability to work had a 3-fold higher likelihood of significant vision loss than those who worked (aOR 3.01, 95% CI 1.46–6.18). Household

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income was a significant independent predictor of significant vision loss, with poorer individuals more likely to have vision loss (aOR 1.63, 95% CI 1.15-2.31) than their not so poor counterparts. Although those with “poor/fragile” self-reported financial status of the household were 1.41 times more likely to have vision loss than those with “fine” one, the association did not reach statistical significance (P=0.149). The effect of ethnicity and education were assessed in the multivariate analysis but were not included in the final model because they did not explain any of the variance.

6.2.3 Causes of vision impairment and blindness

The leading causes of mild vision impairment (Table 26) were uncorrected refractive error (70.3% or 64/91), cataract (22.0%), posterior capsule opacification (2.2%) and macular degeneration (2.2%) and amblyopia (2.2%). The leading causes of MSVI were cataract (54.7% or 75/137), uncorrected refractive error (30.7%), posterior capsule opacification (5.8%) and macular degeneration (5.1%). Overall, 16 persons were bilaterally blind. In 10 (62.5%) of them, the primary cause was cataract while in another two, it was optic atrophy. One person each was blind due to secondary glaucoma (surgical), corneal scar, macular degeneration, optic neuropathy, diabetic retinopathy and absent globe (caused by bilateral chemical [lime] injury). A further analysis showed that, 97.8% of the mild VI, 94.9% MSVI and 87.5% blindness had a preventable or treatable cause.

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Table 20 Multivariable analyses of factors associated with the presence one or more eye problems (self-reported) in one or both eyes among survey participants (n=638). Persons with one or more eye problems Crude OR Adjusted OR Variable n Freq [%] [95% CI] [95% CI] All 638 507 [79.5] Age, y 50–59 347 281 [81.0] 1.0 60–69 178 138 [77.5] 0.81 [0.52–1.26] ≥ 70 113 88 [77.9] 0.83 [0.49–1.39] P-value* 0.586 Gender Male 314 234 [74.5] 1.0 1.0 Female 324 273 [84.3] 1.83 [1.24–2.71] 1.81 [1.22-2.68] P-value 0.003 0.003 Ethnicity Kutchi 304 241 [79.3] 1.0 Bengali 168 141 [83.9] 1.37 [0.83–2.24] Sindhi 127 95 [74.8] 0.78 [0.48–1.26] Others† 39 30 [76.9] 0.87 [0.39–1.93] P-value 0.276 Education Any‡ 100 81 [81.0] 1.12 [0.65-1.93] None 538 426 [79.2] 1.0 P-value 0.680 Self-reported financial status of the household§ “Fine” 123 87 [70.7] 1.0 1.0 “Poor/Fragile” 515 420 [81.6] 1.83 [1.17–2.86] 1.80 [1.15-2.82]§ P-value 0.008 0.011 *The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. † Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. ‡Any education included one or more years of school-based education. §Adjusted for gender

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Table 20 (continued) Multivariable analyses of factors associated with the presence one or more eye problems (self-reported) in one or both eyes among survey participants (n=638). Persons with one or more eye problems Crude OR Adjusted OR Variable n Freq [%] [95% CI] [95% CI] Daily per capita income of the household, US dollars¶ ≤ 0.52 320 248 [77.5] 1.0 ≥ 0.53 318 259 [81.4] 1.27 [0.87-1.87] P-value* 0.218 Work status Work 524 423 [80.7] 1.56 [0.79-3.05] Retired/ do not do any work 66 49 [74.2] 1.07 [0.46-2.49] Unable to work 48 35 [72.9] 1.0 P-value 0.241 *The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. ¶The distribution of survey participants into income groups is based on quartile analysis. The quartiles were further grouped into two. Information on income was collected in Pak Rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 21 Prevalence of self-reported eye problems in one or both eyes among survey participants (n= 638) by gender Men Women All Self-reported eye problems* n=314 n=324 n=638 P† Vision-related problems Freq [%] Freq [%] Freq [%] Reduced near vision 79 [25.2] 99 [30.6] 178 [27.9] NS Reduced distance vision 33 [10.5] 33 [10.2] 66 [10.3] NS Reduced near and distance vision 18 [5.7] 18 [5.6] 36 [5.6] NS Cloudy vision 33 [10.5] 58 [17.9] 91 [14.3] 0.008 Difficulty recognizing faces/bus 15 [4.8] 19 [5.9] 34 [5.3] NS Troublenumbers with night vision 22 [7.0] 11 [3.4] 33 [5.2] 0.039 Headaches from vision problems 4 [1.3] 13 [4] 17 [2.7] 0.047 Reduced vision in one eye (unoperated 10 [3.2] 6 [1.9] 16 [2.5] NS Totalone) loss of vision in one eye 7 [2.2] 5 [1.5] 12 [1.9] NS Total(unoperated loss of visionone) in both eyes 3 [1] 6 [1.9] 9 [1.4] NS Reduced(unoperated vision ones) in the operated eye 3 [1] 10 [3.1] 13 [2] 0.09 Total loss of vision in the operated eye 4 [1.3] 4 [1.2] 8 [1.3] NS Diplopia (double vision) 7 [2.2] 2 [0.6] 9 [1.4] NS Glare 5 [1.6] 2 [0.6] 7 [1.1] NS Reduced vision due to diabetes 0 [0] 1 [0.3] 1 [0.2] Dry/red eyes Watering eyes 32 [10.2] 33 [10.2] 65 [10.2] NS Burning eyes 9 [2.9] 13 [4] 22 [3.4] NS Itchy eyes 7 [2.2] 15 [4.6] 22 [3.4] NS Painful eyes 6 [1.9] 7 [2.2] 13 [2.0] NS Scratchy eyes 3 [1.0] 4 [1.2] 7 [1.1] NS Dirty discharge 2 [0.6] 0 [0] 2 [0.3] Redness 0 [0] 1 [0.3] 1 [0.2] *Respondents were able to indicate more than one symptom/problem in one or both eyes. Because of multiple responses, the percentages add up to more than 100%. Of 638 participants, 131 (20.5%) reported no symptom/problem while 369 (57.8%) reported one, 115 (18.0%) reported two, 18 (2.8%) reported three, and 5 (0.8%) reported four or more eye symptoms/problems. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. NS=Statistically not significant.

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Table 21 (Continued) Prevalence of self-reported eye problems in one or both eyes among survey participants (n=638) by gender Men Women All Self-reported eye problems* n=314 n=324 n=638 P† Other eye conditions Freq [%] Freq [%] Freq [%] Cataract 3 [1] 2 [0.6] 5 [0.8] NS Fleshy growth in the eye 2 [0.6] 1 [0.3] 3 [0.5] Floaters 1 [0.3] 1 [0.3] 2 [0.3] Glaucoma 1 [0.3] 0 [0] 1 [0.2] Drooping eyelids 0 [0] 1 [0.3] 1 [0.2] Heavy eyes 0 [0] 1 [0.3] 1 [0.2] *Respondents were able to indicate more than one symptom/problem in one or both eyes. Because of multiple responses, the percentages add up to more than 100%. Of 638 participants, 131 (20.5%) reported no symptom/problem while 369 (57.8%) reported one, 115 (18.0%) reported two, 18 (2.8%) reported three, and 5 (0.8%) reported four or more eye symptoms/problems. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. NS=Statistically not significant.

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Table 22 Profile of self-reported eye problems among survey participants (n=638) by cataract surgery status Cataract surgery in one or both eyes Self-reported eye Yes No All problems/symptoms* n=97 n=541 n=638 P† Vision-related symptoms Freq [%] Freq [%] Freq [%] Reduced near vision 4 [4.1] 174 [32.2] 178 [27.9] <0.001 Reduced distance vision 8 [8.2] 58 [10.7] 66 [10.3] NS Reduced near and distance vision 2 [2.1] 34 [6.3] 36 [5.6] NS Cloudy vision 17 [17.5] 74 [13.7] 91 [14.3] NS Difficulty recognizing face/bus 5 [5.2] 29 [5.4] 34 [5.3] NS Troublenumber with night vision 6 [6.2] 27 [5] 33 [5.2] NS Headaches from vision problems 1 [1.0] 16 [3] 17 [2.7] NS Reduced vision in one eye 1 [1.0] 15 [2.8] 16 [2.5] NS (unoperated one) Total loss of vision in one eye 5 [5.2] 7 [1.3] 12 [1.9] 0.01 (unoperated one) Total loss of vision in both eyes 2 [2.1] 7 [1.3] 9 [1.4] NS (unoperated ones) Reduced vision in the operated 13 [13.4] 0 [0] 13 [2] Totaleye loss of vision in the operated 8 [8.2] 0 [0] 8 [1.3] Diplopiaeye (double vision) 0 [0] 9 [1.7] 9 [1.4] Glare 0 [0] 7 [1.3] 7 [1.1] Reduced vision due to diabetes 0 [0] 1 [0.2] 1 [0.2] *Respondents were able to indicate more than one symptom/problem. Because of multiple responses, the percentages add up to more than 100%. Of 638 participants, 131 (20.5%) reported no symptom/problem while 369 (57.8%) reported one, 115 (18.0%) reported two, 18 (2.8%) reported three, and 5 (0.8%) reported four or more eye symptoms/problems. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. NS: Not statistically significant.

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Table 22 (continued). Profile of self-reported eye problems among survey participants (n=638) by cataract surgery status

Cataract surgery in one or both eyes Self-reported eye Yes No All problems/symptoms* n=97 n=541 n=638 P† Dry/red eyes Freq [%] Freq [%] Freq [%] Watering eyes 16 [16.5] 49 [9.1] 65 [10.2] 0.026 Burning eyes 4 [4.1] 18 [3.3] 22 [3.4] NS Itchy eyes 2 [2.1] 20 [3.7] 22 [3.4] NS Painful eyes 4 [4.1] 9 [1.7] 13 [2] NS Scratchy eyes 1 [1.0] 6 [1.1] 7 [1.1] NS Dirty discharge 0 [0] 2 [0.4] 2 [0.3] Redness 1 [1.0] 0 [0] 1 [0.2] Other eye conditions Cataract 2 [2.1] 3 [0.6] 5 [0.8] Fleshy growth in the eye 0 [0] 3 [0.6] 3 [0.5] Floaters 0 [0] 2 [0.4] 2 [0.3] Glaucoma 1 [1] 0 [0] 1 [0.2] Drooping eyelids 0 [0] 1 [0.2] 1 [0.2] Heavy eyes 0 [0] 1 [0.2] 1 [0.2] *Respondents were able to indicate more than one symptom/problem. Because of multiple responses, the percentages add up to more than 100%. Of 638 participants, 131 (20.5%) reported no symptom/problem while 369 (57.8%) reported one, 115 (18.0%) reported two, 18 (2.8%) reported three, and 5 (0.8%) reported four or more eye symptoms/problems. † P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. NS: Not statistically significant.

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Table 23 Gender differences in the crude and age-standardised prevalence of vision loss among survey participants (n = 638) Male Female All Crude prevalence of n=314 n=324 n=638 vision loss Prevalence [95% CI] Prevalence [95% CI] Prevalence [95% CI] No vision impairment ≥ 6/12 69.4 [64.3, 74.5] 54.3 [48.9, 59.8] 61.8 [58, 65.5] Significant vision impairment 30.6 [25.5, 35.7] 45.7 [40.2, 51.1] 38.2 [34.5, 42.0] <6/12 Mild vision impairment 12.7 [9, 16.4] 15.7 [11.8, 19.7] 14.3 [11.5, 17] <6/12–6/18 Moderate to severe vision 16.9 [12.7, 21] 25.9 [21.1, 30.7] 21.5 [18.3, 24.7] impairment <6/18–3/60 Blindness <3/60 1.0 [-0.1, 2.0] 4.0 [1.9, 6.2] 2.5 [1.3, 3.7] Age-standardised prevalence of vision loss No vision impairment ≥ 6/12 67.0 [62.1, 71.9] 51.3 [45.9, 56.8] 58.9 [55.2, 62.7] Significant vision impairment 33.0 [28.1, 37.9] 48.7 [43.2, 54.1] 41.1 [37.3, 44.8] <6/12 Mild vision impairment 13.6 [9.7-17.5] 16.1 [11.9 20.3] 15.1 [12.2-17.9] <6/12–6/18 Moderate to severe vision 18.2 [13.9-22.6] 28.0 [22.9-33.1] 23.2 [19.8-26.5] impairment <6/18–3/60 Blindness <3/60 1.1 [-0.1-2.4] 4.6 [2.1-7.0] 2.8 [1.4-4.2]

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Table 24 Age standardized prevalence of vision loss according to age, ethnicity, SES and other characteristics Mild VI MSVI Blindness <6/12-6/18 <6/18-6/60 < 3/60 Variable n=91 n=137 n=16 n Prevalence Prevalence Prevalence [95%CI] [95%CI] [95%CI] Age, y 50–69 525 12.8 [9.9, 15.7] 19.0 [15.6, 22.4] 1.8 [0.6, 2.9] ≥ 70 113 22.1 [14.4, 29.8] 36.3 [27.4, 45.2] 6.2 [1.7, 10.7] Ethnicity Kutchi 304 15.9 [11.8, 20] 23.4 [18.7, 28.2] 3.4 [1.3, 5.5] Bengali 168 12.3 [6.9, 17.7] 25.4 [18.3, 32.5] 2.7 [-0.1, 5.4] Sindhi 127 14.0 [7.4, 20.6] 17.7 [10.5, 24.8] 1.9 [-0.9, 4.6] Others‡ 39 19.7 [8.7, 30.7] 34.5 [26.4, 42.6] 0 Current work status Work 524 14.2 [10.9, 17.6] 22.2 [18.3, 26.2] 1.9 [0.5, 3.2] Retired/do not do 66 19.2 [10.3, 28.1] 16.3 [7.8, 24.7] 0 any work Unable to work 48 15.5 [1.5, 29.5] 31.2 [16.8, 45.6] 18.3 [3.3, 33.2] Education Any§ 100 17.1 [7.9, 26.4] 17.9 [9.6, 26.3] 0.9 [-0.9, 2.7] None 538 15.5 [12.4, 18.7] 23.5 [19.9, 27.2] 3.0 [1.5, 4.5] Self-reported financial status of the household ¶ “Fine” 123 19.9 [12.5, 27.3] 11.4 [5.5, 17.3] 0.6 [-0.6, 1.9] “Poor/Fragile” 515 14.0 [10.9, 17.1] 25.9 [22.0, 29.7] 3.3 [1.7, 5.0] Daily per capita income of the household, US dollars≤ 0.52∥ 320 16.9 [12.7, 21.1] 26.3 [21.5, 31.1] 3.0 [1.0, 4.9] ≥0.53 318 13.1 [9.1, 17.0] 19.9 [15.2, 24.5] 2.7 [0.7, 4.8] ‡ Others included 8 ethnic Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. § Any education included one or more years of school-based education. ¶ Self-reported financial status of the household was examined by asking participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” or “poor/fragile”. ∥The distribution of survey participants into income groups is based on quartile analysis. The quartiles were further grouped into two. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 25 Uni- and multivariable analysis of factors associated with presenting vision <6/12 in the better eye among survey participants (n = 638) Total Persons with PVA < 6/12 Crude OR Adjusted OR Variable Freq [%] [95% CI] [95% CI] All 638 244 [38.2] Age, y 50–59 347 94 [27.1] 1.0 1.0 60–69 178 77 [43.3] 2.05 [1.40–3.0] 2.07 [1.38-3.09] ≥ 70 113 73 [64.6] 4.91 [3.12–7.72] 4.22 [2.56-6.96] P value* <0.001 <0.001 Sex Male 314 96 [30.6] 1.0 1.0 Female 324 148 [45.7] 1.91 [1.38–2.64] 2.43 [1.69-3.51] P value <0.001 <0.001 Ethnicity Sindhi 127 37 [29.1] 1.0 Kutchi 304 127 [41.8] 1.75 [1.12–2.72] Bengali 168 62 [36.9] 1.42 [0.87–2.33] Others† 39 18 [46.2] 2.08 [1.0–4.36] P value 0.067 Education Any‡ 100 30 [30.0] 1.0 None 538 214 [39.8] 1.54 [0.97-2.44] P value 0.066 Current work status Work 524 180 [34.4] 1.0 1.0 Retired/do not do any work 66 29 [43.9] 1.50 [0.89–2.52] 1.35 [0.75 2.42] Unable to work 48 35 [72.9] 5.15 [2.66–9.97] 3.01 [1.46-6.18] P value <0.001 0.010 * The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. † Others included 8 ethnic Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. ‡ Any education included one or more years of school-based education.

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Table 25 (Continued) Uni- and multivariable analysis of factors associated with presenting vision <6/12 in the better eye among survey participants (n = 638) Total Persons with Variable VA < 6/12 Crude OR Adjusted OR Freq [%] [95% CI] [95% CI] Self-reported financial status of the household§ “Fine” 123 36 [29.3] 1.0 1.0 “Poor/fragile” 515 208 [40.4] 1.64 [1.07–2.51] 1.41 [0.88-2.25] P value* 0.023 0.149 Daily per capita income of the household, US dollars¶ ≤ 0.52 320 141 [44.1] 1.64 [1.19–2.27] 1.63 [1.15-2.31] ≥0.53 318 103 [32.4] 1.0 1.0 P value 0.002 0.006 * The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. § Self-reported financial status of the household was examined by asking participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” or “poor/fragile”. ¶ The distribution of survey participants into income groups is based on quartile analysis. The quartiles were further grouped into two. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan rupees).

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Table 26 Cause of vision loss by gender among survey participants (n = 638)

Significant Moderate or vision Mild vision Severe vision impairment impairment impairment Blindness <6/12 <6/12-6/18 <6/18-6/60 <3/60 Cause of vision loss n=244 n=91 n=137 n=16 Freq % Freq % Freq % Freq % Uncorrected refractive error 106 43.4 64 70.3 42 30.7 0 0 Cataract 105 43.0 20 22.0 75 54.7 10 62.5 Posterior capsule opacification 10 4.1 2 2.2 8 5.8 0 0 High cylindrical error after 1 0.4 0 0 1 0.7 0 0 surgery Secondary glaucoma (surgical) 1 0.4 0 0 0 0 1 6.2 Macular degeneration 10 4.1 2 2.2 7 5.1 1 6.2 Diabetic retinopathy 2 0.8 1 1.1 0 0 1 6.2 Glaucoma 1 0.4 0 0 1 0.7 0 0 Optic neuropathy 1 0.4 0 0 0 0 1 6.2 Amblyopia 5 2.0 2 2.2 3 2.2 0 0 Absent globe 1 0.4 0 0 0 0 1 6.2 Corneal scar 1 0.4 0 0 0 0 1 6.2

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6.3 Access to eye care services and user experiences of eye care

6.3.1 Eye care services that are available for the study population

Table 27 lists key eye care services available for the selected as well as other populations living in Keamari and other towns in Karachi. The list was derived by asking survey participants about where they had their last eye visit or where they had their cataract surgery if performed in the past. Community leaders, service providers and policy-makers were also asked about the existence of eye care facilities in the area in general and for the fishing communities in particular. These interviews revealed that there are no special services available for fishing communities in Karachi. The government-owned Qatar General Hospital, located in Orangi Town, Karachi is the designated secondary level health-care facility for the population of Kemari Town as well as three other towns in Karachi West—Baldia, Site and Orangi. The hospital has a well-established eye unit. A range of non-profit organisations are involved in the provision of eye care services—with LRBT Karachi being the largest provider of free eye care services. On the other hand, there is an extensive network of for-profit private hospitals and clinics in Karachi. In addition, eye camps are organised by the community leaders in the fishing populations once a year or biannually.

6.3.2 Eye care utilisation

Overall, 45.3% (95% CI, 41.4-49.2%) of the survey participants reported having had an eye examination in the past (Table 28). Only 12.1% (9.5-14.6), 19.1% (16.1-22.2) and 30.9% (27.3-34.5) of them had seen an eye doctor in the last 12 months, 2 years, or 5 years, respectively. Those who did receive an eye examination within the last 5 years, 60.9%, 13.7%, 15.7%, and 9.6% received their most recent examination in private, charity/welfare, government and camp settings, respectively. Over a third of those who were bilaterally blind (37.5%) and about half of those with vision impairment or severe vision impairment (50–60%) had never seen an eye doctor. Those with presenting VA < 6/12 in the better eye were more likely to have had an eye examination in the past than those with VA ≥ 6/12 (50.4 vs. 42.1; P <0.05). Among all ethnic groups in the survey, Bengalis were the most disadvantaged with respect to eye care use: only 24.4% of them had ever had an eye examination compared to 42.5% of Sindhis and 56.9% of Kutchis (P <0.001). Overall, women had a higher likelihood of having had an eye examination compared with men (50.6% vs. 39.8%; P <0.01). When 125

stratified by ethnicity, women in all 3 ethnic groups compared with men had a higher likelihood of ever having had an eye examination, but the differences were not statistically significant: 58.5% vs. 54.9% in Kutchis (P =0.53), 50.8% vs. 35.3% in Sindhis (P=0.08) and 27.6% vs. 21.7% in Bengalis (P = 0.376). People ≥ 60 years of age compared with their counterparts 50–59 years of age (51.5% vs. 40.1%; P <0.01) were more likely to have had an eye examination. There were no statistically significant differentials in eye care utilisation by socioeconomic status variables (work status, education, self-reported financial status of the household and daily per capita income of the household). Table 29 shows eye care use by occupation. Overall, people who were unable to work, were retired/did not do any work were more likely to have had an eye examination in the past compared with those currently employed in the fishing or non-fishing sectors. Table 30 shows the results of univariate and multivariable binary logistic regression analysis of factors associated with ever having had an eye examination (n=638). Covariates with P ≤ 0.2 in the univariate analysis were selected for the multivariable analysis. These included age, sex, marital status, ethnicity, work type, presenting vision, self-reported eye/vision problem and self-reported diabetes. The multivariable analysis showed that only ethnicity, self-reported eye/vision problem and self-reported diabetes were independently associated with ever having had an eye examination. Ethnic Bengalis were 4.2 times less likely to have had an eye examination in the past compared with ethnic Kutchis (adjusted OR 0.24, 95% CI 0.15–0.38; P<0.001) after adjusting for the effect of all other factors. Those having a self-reported current eye problem or self-reported diabetes were more likely to have ever seen an eye doctor compared with their respective reference groups.

6.3.3 Barriers to access to eye care

Overall, 349 (54.7%; 95% CI, 50.8–58.5%) of the survey participants reported never having had an eye examination (hereafter termed ‘‘never users”). When asked why they had not done so, 306 (87.7%) cited one, 42 (12.0%) two, and only one person (0.3%) three reasons. As shown in Table 31, the most commonly reported perceived barrier to access was ‘‘lack of need or low need’’ (50.4% or 176/349), followed by financial hardships (36.4%), ‘‘fears’’ (8.6%), social support constraints (6.3%), health seeking behaviour/belief problems (2.6%), coexisting health problems (2.3%), and lack of

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information about the location of available services (2.3%). A higher proportion of men compared to women (66.1%; 95% CI, 59.1–72.5 vs. 31.9%; 95% CI, 25.1–39.5; P < 0.001) cited no need, no eye/vision problem, or low need, as reasons for not having had an eye examination in the past. The three other major barriers to access were significantly more prevalent among women than men: financial hardships (45.0%; 95% CI, 37.5–52.7 vs. 29.1%; 95% CI, 23.1–36.0; P < 0.01), ‘‘fears’’ (16.3%; 95% CI, 11.3–22.8 vs. 2.1%; 95% CI, 0.6–5.5; P < 0.001), and social support constraints (12.5%; 95% CI, 8.2–18.6 vs. 1.1%; 95% CI, 0.04–4.03; P < 0.001). Social support related constraints included no one at home to assist with childcare, sick family member, young daughters with no one to accompany them, or inability to obtain leave. Women voiced fears of eye operations and their poor outcomes; ‘fears of hospitals, doctors and injections; fears of being in a crowded or closed environment; and fears of violence in the city. While none of the 349 never users mentioned lack of availability of service as a barrier, eight (2.3%) people (seven women) mentioned lack of information about service locations as a barrier. One woman reported her husband would not allow her to leave the house and visit an eye doctor while another indicated that she strictly observed purdah (the practice by women in certain societies of screening themselves from men or strangers) and hence did not want to attend a mixed-sex eye hospital. Distrust in health systems was reported by four people and coexisting health problems by eight. There also were significant differences in the distribution of the two most cited reasons, lack of need and financial constraints, by ethnicity and socioeconomic status (Tables 32 and 33). Perceived lack of need for an eye examination was more prevalent among Sindhis (69.9%; 95% CI, 58.5–79.2) compared to Kutchis (55.0%; 95% CI, 46.4– 63.2) and Bengalis (32.3%; 95% CI, 24.8–40.9). By contrast, financial hardships were more prevalent among Bengalis (52.0%; 95% CI, 43.4–60.5) compared to Kutchis (31.3%; 95% CI, 24.0–39.7) and Sindhis (19.2%; 95% CI, 11.7–29.9). Similarly, individuals with self-reported ‘‘poor/fragile’’ financial status of the household compared to those self- assessed as ‘‘fine’’ were more likely to cite financial hardships (41.3%; 95% CI, 35.7–47.2 vs. 17.8%; 95% CI, 10.6–28.3; P < 0.001), while less likely to cite lack of need (45.7%; 95% CI, 39.9–51.6 vs. 68.5%; 95% CI, 57.1–78.0; P < 0.01) as barriers (Table 33). Table 34 through Table 36 show the results of subgroup analyses of evidence of significant eye problems among those with perceived lack of need for an eye examination. Of them, 55.0% had at least one self-reported eye problem and 21.9% had significant

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vision loss (<6/12) in their better eye at presentation. Next, a multiple logistic regression analysis identified factors associated with perceived lack of need for an eye examination (yes/no), as shown in Table 36. These included gender (P < 0.001), ethnicity (P < 0.001), presenting vision (P=0.013), and the presence of at least one self-reported eye problem (P <0.001). Ethnic Bengalis, women, those with significant vision loss, and those with self- reported eye problems were substantially less likely to cite lack of need as a reason for not having had an eye examination in the past compared to their respective reference groups.

6.3.4 User experiences and acceptability of eye care services

Two hundred and eighteen of 638 survey participants had had an eye examination in the last 5 years. In the majority (57.3% or 125/218) of cases, the most recent examination took place in a private health care facility (Table 37). 16.5% survey participants had their last eye examination in a charitable health care facility, 15.6% public (government) hospital, and 10.6% eye camp. None of the reported examinations occurred in Qatar General Hospital, Orangi, the government hospital designated for the population in Keamari, including the fishing communities. The type of health care facility visited for the examinations (n=218) was cross tabulated by gender, ethnicity, and socioeconomic status The analysis revealed that while there were no striking differences between men and women, there were marked ethnic and socioeconomic differentials in the type of health care facility visited (Data not shown in the Tables). Ethnic Bengalis (20.6%) were 2.9 to 3.5 times less likely to have had their eye examination by a private provider compared with Kutchis (60.6%) and Sindhis (72.1%). Instead, a higher proportion of Bengalis had had an eye examination in a charitable facility (44.1% or 15/34), a public hospital (23.5%) or an eye camp (11.8%). Individuals who self-reported “poor/fragile” financial status of the household (54.2% or 96/177) were 1.3 times less likely to have had an eye examination in the private sector compared with their counterparts who self-reported household financial status as “fine” (70.7%; 29/41). Women, ethnic Bengalis and those with “poor/fragile” self-reported financial status of the household and those in the lower two income quartiles were more likely to visit a government hospital than their respective reference groups. The most frequent reason for an eye examination was cataract surgery or its follow up (30.7% or 67/218; Table 37), followed by distance vision problems (18.8%), near vision problems (18.3%) or both (7.3%). Overall one out of every 6 (17%) eye

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examination was for non-vision threatening conditions such as watering, itching, burning and foreign body sensation while 2 were for eye trauma and one each for glaucoma, drooping eyelids and diabetic eye disease. Only 4 (1.8%) persons reported they just wanted to have their ‘healthy’ eyes checked. Overall, 6% (13 of 218) respondents reported having bad experiences during their most recent eye care visit (Table 37), including discrimination in the order in which patients were examined or in the quality of eye examination (n =10), staff misbehaviour such as showing anger or physically pushing the patient (n=4), not receiving promised glasses (n=1) and long power outage causing postponement of cataract surgery (n=1). When asked if bribery, sifarish (literally ‘undue favours/undue influence’ in Urdu language) or both were prevalent in the health care facility they visited, 17 people (7.9%) answered “yes”, 21(9.6%) “don’t know” while 82.6% “no”. When asked if they were treated with dignity and respect, 96.3% responded in the affirmative while 3.7% in the negative. 86 (39.4%) participants reported having difficulty in paying the treatment charges. Overall, 43.1% (or 94/218) participants reported having no intention to visit the health care facility again or recommend it to their relatives or friends, if need be (Tables 37 and 38). A higher proportion of women than men (49.6% vs. 34.1%; P=0.023) and those with VA < 6/12 than those with VA ≥ 6/12 (53.7% vs. 35.0%; P=0.006) expressed such concerns. Variation in rates were not significant by age at the time of visit (P=0.176), ethnicity (P=0.649), financial status of the household (P=0.105), daily per capita income of the household (P=0.906), work status (P=0.262), reason for visit (P=0.742) and type of facility visited (P=0.215). Four covariates with a P ≤ 0.2 in relation to not having the intention to visit again or recommend to others in the univariable analysis (age at the last visit, gender, self- reported financial status of the household and presenting VA) were evaluated in the multiple logistic regression analysis. Age at the last visit and self-reported financial status of the household did not have much effect and were not included in the final model which showed that women compared with men (OR 1.90, 95% CI 1.08-3.35; P=0.026) and individuals with VA <6/12 in the better eye on presentation compared with those with ≥ 6/12 (OR 2.15, 95% 1.24-3.75 P=0.007) were approximately two times less likely to visit again or to recommend the service to others.

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As shown in Table 39 and Table 40, the most commonly reported reason behind acceptability of care was “effectiveness of care’’(53.2% or 66/124), followed by good communication (14.5%), financial accessibility (11.3%), geographic accessibility (4.8%), timeliness of assistance (1.6%), and non-discrimination in care (1.6%). Effectiveness of care included “benefit from the prescribed treatment”, “good vision after cataract surgery”, and “benefit from the prescribed glasses” while good communication included “kind/caring/respectful staff”, “doctor talked to me while performing surgery” and “the doctor knows us.” A total of 15 respondents indicated that they were willing to visit the facility again or recommend to others but cautioned against high cost of care, long distance, tedious process of consultation, or discrimination against ethnic Bengalis. The main reasons behind unacceptability of eye care (Table 41 and Table 42) were financial inaccessibility (35.1% or 33/94) and ineffective eye care (29.8%) including lack of benefit from prescribed treatment or glasses, poor outcome of cataract surgery (n=7), recurrence of the problem as the medication was stopped, and “not being properly examined.” A significant proportion of participants (8.5%), all of them women, cited various ‘‘fears,’’ notably of enclosed spaces and overcrowded places, of surgery, injections and doctors, and of violence in the city. Six (6.4%) respondents, five of them women, identified inadequate special support services for those with “walking difficulties” and “language barriers” or lacking an escort. Other reasons behind unacceptability of eye care included delayed assistance (8.5%), inadequate special support services (6.4%), poor communication by staff (5.3%), and geographic inaccessibility (3.2%). Two participants reported doctors in an “eye camp” in Baba Island promised them free glasses, but they never got the glasses while one participant said she was left unattended for several hours after cataract surgery.

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Table 27 List of the key available eye care facilities/providers* for the fishing and other populations in Karachi Name of the facility/service Level Specialty Type of provider

1. Ziauddin Group of Hospitals Tertiary General Private

2. Hashmanis Hospital Tertiary Eye Private

3. Taj Medical complex Tertiary General Private

4. LRBT, Karachi Tertiary Eye Charity/welfare

5. Fatmia Bai Hospital Secondary General Charity/welfare

6. Memon Hospital, near Jama Cloth Secondary General Charity/welfare

7. Al-Ibrahim Eye Hospital, Malir Tertiary Eye Charity/welfare

8. Qatar General Hospital Secondary General Government

9. Spencer Eye Hospital Secondary Eye Government

10. Jinnah Hospital Tertiary General Government

11. Civil Hospital Tertiary General Government

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Table 28 Proportion of survey participants who received their last eye examination within the last 12 months, 2 years, 5 years or who ever had an eye examination (n = 638).

Time since last eye examination < 12 months < 2 years < 5 years Ever Variable n Freq % Freq % Freq % Freq % All 638 77 12.1 122 19.1 197 30.9 289 45.3 Age group, y 50–59 347 32 9.2 60 17.3 97 28.0 139 40.1 ≥ 60 291 45 15.5 62 21.3 100 34.4 150 51.5 Sex Male 314 33 10.5 52 16.6 79 25.2 125 39.8 Female 324 44 13.6 70 21.6 118 36.4 164 50.6 Marital status Married 453 48 10.6 79 17.4 126 27.8 190 41.9 Widowed/ 174 27 15.5 40 23.0 65 37.4 93 53.4 separated/ divorcee Never married 11 2 18.2 3 27.3 6 54.5 6 54.5 Ethnicity* Kutchi 304 51 16.8 74 24.3 114 37.5 173 56.9 Bengali 168 9 5.4 17 10.1 30 17.9 41 24.4 Sindhi 127 14 11.0 24 18.9 40 31.5 54 42.5 Others 39 3 7.7 7 17.9 13 33.3 21 53.8 Work status Marine fisherman 133 11 8.3 19 14.3 26 19.5 48 36.1 Other occupation 204 19 9.3 31 15.2 51 25.0 78 38.2 Housewife 187 24 12.8 43 23.0 74 39.6 104 55.6 Retired/do not do 66 12 18.2 17 25.8 28 42.4 36 54.5 any work Unable to do any 48 11 22.9 12 25.0 18 37.5 23 47.9 work Education† Any 100 14 14.0 19 19.0 34 34.0 51 51.0 None 538 63 11.7 103 19.1 163 30.3 238 44.2 *Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. † Any education included one or more years of school-based education.

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Table 28 (Continued) Proportion of survey participants who received their last eye examination within the last 12 months, 2 years, 5 years or who ever had an eye examination (n = 638) Time since last eye examination < 12 months < 2 years < 5 years Ever Variable n Freq % Freq % Freq % Freq % Self-reported financial status of the household‡ “Fine” 123 18 14.6 29 23.6 40 32.5 50 40.7 “Poor/Fragile” 515 59 11.5 93 18.1 157 30.5 239 46.4 Daily per capita income of household, US dollars § ≤ 0.36 152 18 11.8 28 18.4 44 28.9 74 48.7 0.37–0.52 168 23 13.7 33 19.6 54 32.1 70 41.7 0.53–0.77 159 19 11.9 29 18.2 49 30.8 75 47.2 ≥ 0.78 159 17 10.7 32 20.1 50 31.4 70 44.0 Self-reported eye/vision problem Yes 507 65 12.8 109 21.5 174 34.3 249 49.1 No 131 12 9.2 13 9.9 23 17.6 40 30.5 Diabetes Yes 50 6 12.0 12 24.0 22 44.0 33 66.0 No 588 71 12.1 110 18.7 175 29.8 256 43.5 Presenting visual acuity No vision impairment 394 39 9.9 70 17.8 111 28.2 166 42.1 Mild vision impairment 91 13 14.3 19 20.9 31 34.1 47 51.6 Moderate vision 117 15 12.8 20 17.1 39 33.3 58 49.6 impairment Severe vision impairment 20 3 15.0 6 30.0 8 40.0 8 40.0 Blindness 16 7 43.8 7 43.8 8 50.0 10 62.5 ‡ Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. § The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 29 Use of eye care by occupation, stratified by ethnicity (n=638) Time since last eye examination < 1 year < 2 years < 5 years Ever Occupation n Freq % Freq % Freq % Freq % Kutchi Marine fisherman 53 7 13.2 11 20.8 14 26.4 26 49.1 Other occupation 74 9 12.2 15 20.3 24 32.4 41 55.4 Housewife 114 17 14.9 25 21.9 45 39.5 66 57.9 Retired/do not do any work 42 10 23.8 15 35.7 21 50.0 27 64.3 Unable to work 21 8 38.1 8 38.1 10 47.6 13 61.9 Bengali Marine fisherman 25 0 0 2 8.0 3 12.0 5 20.0 Other occupation 93 5 5.4 9 9.7 14 15.1 19 20.4 Housewife 23 1 4.3 3 13.0 6 26.1 8 34.8 Retired/do not do any work 7 1 14.3 1 14.3 1 14.3 1 14.3 Unable to work 20 2 10.0 2 10.0 6 30.0 8 40.0 Sindhi Marine fisherman 53 4 7.5 6 11.3 9 17.0 16 30.2 Other occupation 22 3 13.6 4 18.2 8 36.4 10 45.5 Housewife 39 5 12.8 12 30.8 19 48.7 23 59.0 Retired/do not do any work 8 1 12.5 1 12.5 3 37.5 4 50.0 Unable to work 5 1 20.0 1 20.0 1 20.0 1 20.0 Others Marine fisherman 2 0 0 0 0 0 0 1 50.0 Other occupation 15 2 13.3 3 20.0 5 33.3 8 53.3 Housewife 11 1 9.1 3 27.3 4 36.4 7 63.6 Retired/do not do any work 9 0 0 0 0 3 33.3 4 44.4 Unable to do any work 2 0 0 1 50.0 1 50.0 1 50.0 All Marine fisherman 133 11 8.3 19 14.3 26 19.5 48 36.1 Other occupation 204 19 9.3 31 15.2 51 25.0 78 38.2 Housewife 187 24 12.8 43 23.0 74 39.6 104 55.6 Retired/do not do any work 66 12 18.2 17 25.8 28 42.4 36 54.5 Unable to do any work 48 11 22.9 12 25.0 18 37.5 23 47.9

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Table 30 Factors associated with ever having an eye examination among the survey participants (n=638). Crude Odds Adjusted Variable Ratio (95% CI) P* Odds Ratio (95% CI) P* Age group, y 0.004 0.134 50–59 1.0 1.0 ≥ 60 1.59 (1.16, 2.18) 1.33 (0.92, 1.94) Sex 0.006 0.585 Male 1.0 1.0 Female 1.55 (1.13, 2.12) 1.14 (0.71, 1.84) Marital status 0.029 0.454 Married 1.0 1.0 Widowed/separated/ 1.59 (1.12, 2.26) 1.29 (0.85, 1.96) Divorcee Never married 1.66 (0.50, 5.52) 1.39 (0.39, 4.91) Ethnicity <0.001 <0.001 Kutchi 1.0 1.0 Bengali 0.24 (0.16, 0.37) 0.24 (0.15, 0.38) Sindhi 0.56 (0.37, 0.85) 0.67 (0.43, 1.05) Others† 0.88 (0.45, 1.73) 0.91 (0.45, 1.84) Work type 0.068 0.639 Non-fishing work 1.0 1.0 Marine fishing 0.65 (0.43, 0.97) 0.78 (0.44, 1.37) Retired/do not do any work 1.38 (0.82, 2.33) 1.13 (0.60, 2.11) Unable to work 1.06 (0.58, 1.93) 1.20 (0.60, 2.40) Education‡ 0.213 Any 1.0 None 0.76 (0.50, 1.17) Self-reported financial status of 0.250 the household § “Fine” 1.0 “Poor/Fragile” 1.26 (0.85, 1.88) * The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. † Others included 8 Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns, and 2 Punjabis. ‡ Any education included one or more years of school-based education. § Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” and “poor/fragile”.

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Table 30 (Continued) Factors associated with ever having an eye examination among the survey participants (n=638). Crude Odds ratio Adjusted Variable (95% CI) P* Odds ratio (95% CI) P* Daily per capita income of 0.588 the household, US dollars∥ ≤ 0.36 1.21 (0.77, 1.89) 0.37–0.52 0.91 (0.59, 1.41) 0.53–0.77 1.14 (0.73, 1.77) ≥ 0.78 1.0 Self-reported eye/ <0.001 <0.001 vision problem Yes 2.20 (1.46, 3.31) 2.40 (1.54, 3.74) No 1.0 1.0 Diabetes 0.003 0.011 Yes 2.52 (1.37, 4.62) 2.35 (1.21, 4.54) No 1.0 1.0 Presenting visual acuity 0.041 0.892 ≥ 6/12 1.0 1.0 <6/12 1.40 (1.01, 1.92) 0.97 (0.67, 1.42) *The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. ∥The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pakistan Rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan rupees).

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Table 31 Gender differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349)

Male Female All n=189 n=160 n=349 Self-Perceived Barrier* Freq [%] Freq [%] Freq [%] P† Perceived lack of need‡ 125 [66.1] 51 [31.9] 176 [50.4] <0.001 Financial hardships§ 55 [29.1] 72 [45.0] 127 [36.4] <0.01 “Fears”¶ 4 [2.1] 26 [16.3] 30 [8.6] <0.001 Social support constraints∥ 2 [1.1] 20 [12.5] 22 [6.3] <0.001 Co-existing health problems 3 [1.6] 5 [3.1] 8 [2.3] 0.339 Health seeking behaviour/belief 8 [4.2] 1 [0.6] 9 [2.6] <0.05 problems** Lack of information about the location of 1 [0.5] 7 [4.4] 8 [2.3] <0.05 available services Geographic access problems 2 [1.1] 2 [1.3] 4 [1.1] 0.867 Distrust in health systems †† 4 [2.1] 0 [0] 4 [1.1] 0.064 “Cultural” issues ‡‡ 0 [0] 2 [1.3] 2 [0.6] 0.123 *Because of multiple responses, respondents were able to indicate more than one reason, hence, percentages add up to more than 100%. Of 638 participants, 349 persons who never had an eye examination were included. Of 349 persons, 306 (87.7%) cited one, 42 (12.0%) mentioned two, and one person (0.3%) mentioned three reasons. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. ‡Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. §Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. ¶‘‘Fears’’ cited included fears of operation, doctor, hospital, injections, closed and crowded spaces, violence in the city, police, and being diagnosed with new diseases. ∥Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. **Health seeking behavior/belief problems included fatalistic attitudes and ‘‘old age’’ and belief that nothing can be done about decreased vision/eye problems. †† Distrust in health systems included other’s bad experiences at the service. ‡‡‘‘Cultural’’ issues included ‘‘no permission from husband’’ or purdah.

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Table 32 Ethnic differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349) Ethnicity Kutchi Bengali Sindhi Others n=131 n=127 n=73 n=18 P† Self-Perceived Barrier* Freq [%] Freq [%] Freq [%] Freq [%] Perceived lack of need‡ 72[55.0] 41[32.3] 51[69.9] 12[66.7] <0.001 Financial hardships § 41[31.3] 66[52.0] 14[19.2] 6[33.3] <0.001 “Fears”¶ 15[11.5] 3[2.4] 9[12.3] 3[16.7] <0.05 Social support constraints∥ 9[6.9] 12[9.4] 0[0] 1[5.6] 0.068 Co-existing health problems 1[0.8] 4[3.1] 3[4.1] 0[0] 0.350 Health seeking behaviour/belief problems** 3[2.3] 5[3.9] 1[1.4] 0[0] 0.598 Lack of information about the location of 0[0] 7[5.5] 1[1.4] 0[0] 0.022 available services Geographic access issues 3[2.3] 1[0.8] 0[0] 0[0] 0.438 Distrust in health system†† 0[0] 4[3.1] 0[0] 0[0] 0.070 Cultural issues‡‡ 0[0] 1[0.8] 1[1.4] 0[0] 0.620 *Because of multiple responses, respondents were able to indicate more than one reason, hence, percentages add up to more than 100%. Of 638 participants, 349 persons who never had an eye examination were included. Of 349 persons, 306 (87.7%) cited one, 42 (12.0%) mentioned two, and one person (0.3%) mentioned three reasons. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. ‡Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. §Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. ¶‘‘Fears’’ cited included fears of operation, doctor, hospital, injections, closed and crowded spaces, violence in the city, police, and being diagnosed with new diseases. ∥Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. **Health seeking behavior/belief problems included fatalistic attitudes and ‘‘old age’’ and belief that nothing can be done about decreased vision/eye problems. ††Distrust in health systems included other’s bad experiences at the service. ‡‡‘‘Cultural’’ issues included ‘‘no permission from husband’’ or purdah.

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Table 33 Socio-economic differences in self-perceived barriers to eye care among those who reported never having had an eye examination (n = 349) Self-reported financial status of the household* “Fine” “Poor/Fragile” All n=73 n=276 n=349 Self-Perceived Barrier† Freq [%] Freq [%] Freq [%] P‡ Perceived lack of need§ 50[68.5] 126[45.7] 176[50.4] 0.001 Financial hardships¶ 13[17.8] 114[41.3] 127[36.4] <0.001 “Fears” ∥ 8[11.0] 22[8.0] 30[8.6] 0.418 Social support constraints** 2[2.7] 20[7.2] 22[6.3] 0.159 Co-existing health problems 3[4.1] 5[1.8] 8[2.3] 0.243 Health seeking behaviour/belief problems †† 3[4.1] 6[2.2] 9[2.6] 0.353 Lack of information about the location of 0[0] 8[2.9] 8[2.3] 0.141 available services Geographic access issues 0[0] 4[1.4] 4[1.1] 0.301 Distrust in health system‡‡ 1[1.4] 3[1.1] 4[1.1] 0.840 “Cultural” issues•• 0[0] 2[0.7] 2[0.6] 0.466 * Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: “fine” and “poor/fragile”. †Because of multiple responses, respondents were able to indicate more than one reason, hence, percentages add up to more than 100%. Of 638 participants, 349 persons who never had an eye examination were included. Of 349 persons, 306 (87.7%) cited one, 42 (12.0%) mentioned two, and one person (0.3%) mentioned three reasons. ‡P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. § Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. ¶Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. ∥ ‘‘Fears’’ cited included fears of operation, doctor, hospital, injections, closed and crowded spaces, violence in the city, police, and being diagnosed with new diseases. **Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. ††Health seeking behavior/belief problems included fatalistic attitudes and ‘‘old age’’ and belief that nothing can be done about decreased vision/eye problems. ‡‡Distrust in health systems included other’s bad experiences at the service. §§‘‘Cultural’’ issues included ‘‘no permission from husband’’ or purdah.

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Table 34 Prevalence of eye disease symptoms among participants who cited lack of need as the only reason for not having had an eye examination (n=160) in comparison with those who cited other reasons (n=173)

Cited reason Lack of need alone Other reasons Total n=160 n=173 n=333 Variable Freq [%] Freq [%] Freq [%] At least one eye problem 88 [55.0] 157 [90.8] 245 [73.6] Type of self-reported eye problem Vision-related eye problem Near vision problem 41 [25.6] 66 [38.2] 107 [32.1] Distance vision problem 15 [9.4] 23 [13.3] 38 [11.4] Both near and distance vision problems 6 [3.8] 18 [10.4] 24 [7.2] Cloudy vision 11 [6.9] 33 [19.1] 44 [13.2] Difficulty recognizing face/bus number 5 [3.1] 14 [8.1] 19 [5.7] Trouble with night vision 4 [2.5] 11 [6.4] 15 [4.5] Headache due to vision problems 4 [2.5] 6 [3.5] 10 [3] Reduced vision in one eye 4 [2.5] 3 [1.7] 7 [2.1] Total loss of vision in both eyes 0 [0] 4 [2.3] 4 [1.2] Diplopia (double vision) 3 [1.9] 1 [0.6] 4 [1.2] Glare 1 [0.6] 1 [0.6] 2 [0.6] Floaters 0 [0] 1 [0.6] 1 [0.3] Reduced vision due to diabetes 0 [0] 1 [0.6] 1 [0.3] Dry/itchy eyes Watering eyes 12 [7.5] 17 [9.8] 29 [8.7] Burning eyes 2 [1.3] 3 [1.7] 5 [1.5] Itchy eyes 5 [3.1] 4 [2.3] 9 [2.7] Scratchy eyes 0 [0] 3 [1.7] 3 [0.9] Painful eyes 4 [2.5] 1 [0.6] 5 [1.5] Dirty discharge 1 [0.6] 0 [0] 1 [0.3] Other Fleshy growth in the eye 0 [0] 1 [0.6] 1 [0.3]

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Table 35 Prevalence of vision impairment, and the degree of self-reported visual disability among participants who cited lack of need alone and those who cited other reasons for not having had an eye examination in the past Cited reason Lack of need alone Other reasons Total n=160 n=173 n=333 Variable Freq [%] Freq [%] Freq [%] Presenting visual acuity ≥ 6/12 125 [78.1] 93 [53.8] 218 [65.5] <6/12–6/18 15 [9.4] 26 [15.0] 41 [12.3] <6/18–6/60 17 [10.6] 40 [23.1] 57 [17.1] <6/60–3/60 3 [1.9] 8 [4.6] 11 [3.3] <3/60 0 [0] 6 [3.5] 6 [1.8] Total 160 [100] 173 [100] 333 [100] Degree of difficulty in near work No difficulty 91 [57.2] 46 [26.9] 137 [41.5] Some difficulty 33 [20.8] 25 [14.6] 58 [17.6] A lot of difficulty 15 [9.4] 26 [15.2] 41 [12.4] Cannot do at all 20 [12.6] 74 [43.3] 94 [28.5] Total 160 [100] 173 [100] 333 [100] Degree of difficulty recognising faces No difficulty 124 [78.0] 71 [41.5] 195 [59.1] Some difficulty 18 [11.3] 32 [18.7] 50 [15.2] A lot of difficulty 6 [3.8] 15 [8.8] 21 [6.4] Cannot do at all 11 [6.9] 53 [31] 64 [19.4] Total 159 [100] 171 [100] 330 [100]

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Table 36 Univariate and multiple logistic regression analysis of factors associated with the perception of lack of need among individuals who reported not having had an eye examination in the past (n=333) Cited reason Lack of Other need alone reasons n=160 n=173 Crude Odds Ratio Adjusted Odds Characteristic Subjects Freq [%] Freq [%] [95% CI] Ratio [95% CI] All 333 160 [48.0] 173 [52.0] Age, y 50–59 200 87 [43.5] 113 [56.5] 1.0 1.0 60–69 82 49 [59.8] 33 [40.2] 1.93 [1.14–3.25] 2.22 [1.12–4.40] ≥ 70 51 24 [47.1] 27 [52.9] 1.15 [0.62–2.14] 1.38 [0.59–3.24] P value* 0.048 0.073 Gender Male 179 115 [64.2] 64 [35.8] 4.35 [2.74–6.91] 4.84 [2.71–8.65] Female 154 45 [29.2] 109 [70.8] 1.0 1.0 P value <0.001 <0.001 Ethnicity Kutchi 128 69 [53.9] 59 [46.1] 1.0 1.0 Bengali 122 36 [29.5] 86 [70.5] 0.36 [0.21–0.6] 0.24 [0.12–0.47] Sindhi 68 46 [67.6] 22 [32.4] 1.79 [0.97–3.31] 1.34 [0.62–2.90] Others† 15 9 [60.0] 6 [40.0] 1.28 [0.43–3.81] 0.85 [0.24–3.01] P value <0.001 <0.001 Self-reported financial status of the household‡ “Fine” 69 46 [66.7] 23 [33.3] 2.63 [1.51–4.59] 1.93 [0.94–3.97] “Poor/Fragile” 264 114 [43.2] 150 [56.8] 1.0 1.0 P value 0.001 0.072 *The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. †Others included Barmis, Balochs, Muhajirs, Pakhtuns, and Punjabis. ‡Financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open ended question were grouped into two categories: ‘‘fine” and “poor/fragile.”

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Table 36 (Continued) Univariate and multiple logistic regression analysis of factors associated with the perception of lack of need among individuals who reported not having had an eye examination in the past (n=333) Cited reason Lack of Other need alone reasons n=160 n=173 Crude Odds Ratio Adjusted Odds Characteristic Subjects Freq [%] Freq [%] [95% CI] Ratio [95% CI] Daily per capita income of household, US dollars† ≤ 0.36 74 27 [36.5] 47 [63.5] 1.0 1.0 0.37–0.52 92 50 [54.3] 42 [45.7] 2.07 [1.11–3.88] 1.8 [0.82–3.94] 0.53–0.77 79 38 [48.1] 41 [51.9] 1.61 [0.84–3.08] 1.5 [0.66–3.42] ≥ 0.78 88 45 [51.1] 43 [48.9] 1.82 [0.97–3.43] 1.18 [0.52–2.68] P value* 0.128 0.468 Presenting vision ≥ 6/12 218 125 [57.3] 93 [42.7] 3.07 [1.9–4.96] 2.35 [1.19–4.61] < 6/12 115 35 [30.4] 80 [69.6] 1.0 1.0 P value <0.001 0.013 Presence of ≥ 1 eye symptom/problem Yes 245 88 [35.9] 157 [64.1] 1.0 1.0 No 88 72 [81.8] 16 [18.2] 8.03 [4.4–14.65] 6.79 [3.35–13.73] P value <0.001 <0.001 * The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. † The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pakistan rupees and for ease of comparison, converted into US dollars using midyear exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 37 User experiences and acceptability of their recently visited eye care services (n=218) Type of facility visited Freq[%] Private 125 [57.3] Charity/Welfare 36 [16.5] Government 34 [15.6] Camp 23 [10.6] Reason for visit Cataract surgery or its follow-up 67 [30.7] Other reason 151 [69.3] Intention to visit again or recommend to others Yes 124 [56.9] No 94 [43.1] Treated with dignity and respect Yes 210 [96.3] No 8 [3.7] Payment difficulties* A lot 62 [28.4] Some 24 [11.0] None 132 [60.6] Bad experiences encountered Out-of-turn consultations—some people who registered after me were 2 [0.9] examined before me Some patients had a more detailed and better examination than I had 0 [0] Was made to wait for very long 8 [3.7] The staff became angry at me or snubbed me 3 [1.4] Was physically pushed by the staff 1 [0.5] Did not receive promised glasses 1 [0.5] Long power outage which caused postponement of my cataract surgery 1 [0.5] No bad experience 206 [94.5] Jan Pechan or sifarish (literally ‘undue favours/undue influence’ in Urdu language) and bribery Jan Pechan/sifarish was prevalent 15 [6.9] Bribery was prevalent 1 [0.5] Both were prevalent 1 [0.5] Both were not prevalent 180 [82.6] Don’t know 21 [9.6] *Included 9 people who ‘had to borrow’, 13 who were helped by others and 1 who had to beg.

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Table 38 Unacceptability of eye care and its determinants among survey participants (n=218)

Acceptability* Yes No Crude OR Adjusted OR Variable n Freq [%] Freq [%] [95% CI] [95% CI] All 218 124 [56.9] 94 [43.1] Age at the last visit <60 125 76 [60.8] 49 1.0 ≥ 60 93 48 [51.6] 45[39.2] [48.4] 1.45 [0.85-2.50] P value† 0.176 Gender Male 91 60 [65.9] 31 [34.1] 1.0 1.0 Female 127 64 [50.4] 63 [49.6] 1.91 [1.09-3.32] 1.90 [1.08-3.35] P value 0.023 0.026 Ethnicity Kutchi 127 74 [58.3] 53 [41.7] 1.0 Bengali 34 16 [47.1] 18 [52.9] 1.57 [0.73-3.36] Sindhi 43 26 [60.5] 17 [39.5] 0.91 [0.45-1.85] Others‡ 14 8 [57.1] 6 [42.9] 1.05 [0.34-3.20] P value 0.649 Work status Other occupation 62 36 [58.1] 26 [41.9] 1.0 Marine fishing 30 19 [63.3] 11 [36.7] 0.80 [0.33-1.97] “Housewife” 77 45 [58.4] 32 [41.6] 0.99 [0.50-1.94] Retired/do not do 30 18 [60.0] 12 [40.0] 0.92 [0.38-2.24] anyUnable work to do any 19 6 [31.6] 13 [68.4] 3.00 [1.01 -8.93] workP value 0.262 Self-reported financial status of the household§ “Fine” 41 28 [68.3] 13 [31.7] 1.0 “Poor/fragile” 177 96 [54.2] 81 [45.8] 1.82 [0.88-3.74] P value 0.105 * A total of 218 individuals, who had their most recent visit to an eye doctor in the past 5 years, were asked if they would visit the service again in the future and if they would recommend it to their friends or relatives if need be. †The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. ‡Others included Barmis, Balochs, Muhajirs, Pakhtuns, and Punjabis. §Financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open ended question were grouped into two categories: ‘‘fine” and “poor/fragile.”

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Table 38 (Continued) Unacceptability of eye care and its determinants among survey participants (n=218) Acceptability* Crude OR Adjusted OR n Yes No Variable Freq [%] Freq [%] [95% CI] [95% CI] Daily per capita income of household, US dollars¶ ≤ 52 108 61 [56.5] 47 [43.5] 1.03 [0.60-1.77] ≥ 53 110 63 [57.3] 47 [42.7] 1.0 P value† 0.906 Reason for visit Cataract surgery or its 67 37 [55.2] 30 [44.8] 1.10 [0.62-1.97] follow-up Other reason 151 87 [57.6] 64 [42.4] 1.0 P value 0.742 Type of facility visited Private 125 77 [61.6] 48 [38.4] 1.0 Charity/Welfare 36 20 [55.6] 16 [44.4] 1.28 [0.61-2.72] Government 34 14 [41.2] 20 [58.8] 2.29 [1.06-4.96] Camp 23 13 [56.5] 10 [43.5] 1.23 [0.50-3.03] P value 0.215 Presenting vision ≥ 6/12 123 80 [65.0] 43 [35.0] 1.0 1.0 < 6/12 95 44 [46.3] 51 [53.7] 2.16 [1.25-3.73] 2.15 [1.24-3.75] P value 0.006 0.007 * A total of 218 individuals, who had their most recent visit to an eye doctor in the past 5 years, were asked if they would visit the service again in the future and if they would recommend it to their friends or relatives if need be. †The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. ¶The distribution of survey participants into income groups is based on quartile analysis. The quartiles were further grouped into two. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan rupees).

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Table 39 The principal reasons behind acceptability of the most recently utilised eye care service (n=124), according to gender Male Female All n=60 n=64 n=124 Reason behind acceptability Freq % Freq % Freq % Effectiveness of care* 30 50.0 36 56.3 66 53.2 Good communication† 6 10.0 12 18.8 18 14.5 Financial accessibility‡ 7 11.7 7 10.9 14 11.3 Geographic accessibility 5 8.3 1 1.6 6 4.8 Timeliness of assistance§ 2 3.3 0 0.0 2 1.6 Non-discrimination in care¶ 0 0.0 2 3.1 2 1.6 Cleanliness 1 1.7 0 0.0 1 0.8 Accepted but…∥ 9 15.1 6 9.4 15 12.1 *Effectiveness of care included “benefit from the prescribed treatment”, “good vision after cataract surgery”, and “benefit from the prescribed glasses”. †Good communication included “kind/caring/respectful staff”, “doctor talked to me while performing surgery” and “the doctor knows us.” ‡Financial accessibility included receiving free glasses, medicines, and/or consultation, getting discount on glasses, and having entitlement to health care. §Timeliness of assistance included less waiting. ¶Non-discrimination in care included everyone is seen on their turn. ∥15 respondents indicated that they were willing to visit the facility again or recommend to others but cautioned against high cost of care, long distance, tedious process of consultation, and discrimination against ethnic Bengalis.

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Table 40 The principal reasons behind acceptability of the most recently utilised eye care service (n=124), according to type of facility visited Type of facility visited Charity/ Private Welfare Government Camp n=77 n=20 n=14 n=13 Reason behind acceptability Freq % Freq % Freq % Freq % Effectiveness of care* 40 51.9 11 55.0 8 57.1 7 53.8 Good communication† 13 16.9 3 15.0 2 14.3 0 0.0 Financial accessibility‡ 5 6.5 3 15.0 3 21.4 3 23.1 Geographic accessibility 3 3.9 0 0.0 0 0.0 3 23.1 Timeliness of assistance§ 2 2.6 0 0.0 0 0.0 0 0.0 Non-discrimination in care¶ 1 1.3 1 5.0 0 0.0 0 0.0 Cleanliness 1 1.3 0 0.0 0 0.0 0 0.0 Acceptable but…∥ 12 15.6 2 10.0 1 7.1 0 0.0 *Effectiveness of care included “benefit from the prescribed treatment”, “good vision after cataract surgery”, and “benefit from the prescribed glasses.” †Good communication included “kind/caring/respectful staff”, “doctor talked to me while performing surgery” and “the doctor knows us.” ‡Financial accessibility included receiving free glasses, medicines, and/or consultation, getting discount on glasses, and having entitlement to health care. §Timeliness of assistance included less waiting. ¶ Non-discrimination in care included everyone is seen on their turn. ∥15 respondents indicated that they were willing to visit the facility again or recommend to others but cautioned against high cost of care, long distance, tedious process of consultation, and discrimination against ethnic Bengalis.

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Table 41 The principal reasons behind unacceptability of the most recently utilised eye care service (n=94), according to gender Male Female Total n=31 n=63 n=94 Reason behind unacceptability Freq % Freq % Freq % Financial inaccessibility* 12 38.7 21 33.3 33 35.1 Ineffective eye care† 13 41.9 15 23.8 28 29.8 “Fears”‡ 0 0.0 8 12.7 8 8.5 Delayed assistance§ 1 3.2 7 11.1 8 8.5 Inadequate special support services ¶ 1 3.2 5 7.9 6 6.4 Poor communication by staff∥ 2 6.5 3 4.8 5 5.3 Geographic inaccessibility 1 3.2 2 3.2 3 3.2 No reason mentioned 1 3.2 2 3.2 3 3.2 *Financial inaccessibility included “high cost of care”, “lack of money to buy the prescribed medicines or glasses”, “lack of time due to work responsibilities”, “no entitlement anymore”, and “high cost of travelling.” †Ineffective eye care included “lack of benefit from prescribed treatment”, “adverse outcome”, “poor outcome of cataract surgery”, “lack of benefit from prescribed glasses”, “recurrence of the problem as the medication was stopped”, and “not being properly examined.” ‡“Fears’’ cited included fears of operation, doctor, hospital, injections, closed and crowded spaces, and violence in the city. §Delayed assistance included long queues, a lengthy and tedious process of consultation/surgery, and ‘left unattended by staff for very long after cataract surgery’ and “the person who introduced me there has died.” ¶Inadequate special support services included lack of support for those with “walking difficulties”, “language barriers” and those lacking escort. ∥Poor communication by staff included physician’s expression of anger during consultation, “not receiving the promised glasses”, “doctors promised to come again, but they did not come”, and “thought of being snubbed scared me.”

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Table 42 The principal reason behind unacceptability of the most recently utilised eye care service (n=94), according to type of facility visited Type of facility visited

Charity/ Private Welfare Government Camp n=48 n=16 n=20 n=10 Reason behind unacceptability Freq % Freq % Freq % Freq % Financial inaccessibility* 26 54.2 2 12.5 5 25.0 0 0.0 Ineffective eye care† 11 22.9 7 43.8 4 20.0 6 60.0 Fears‡ 5 10.4 2 12.5 1 5.0 0 0.0 Delayed assistance§ 0 0.0 1 6.3 7 35.0 0 0.0 Inadequate special support 3 6.3 1 6.3 1 5.0 1 10.0 services¶ Poor communication by staff∥ 0 0.0 1 6.3 1 5.0 3 30.0 Geographic inaccessibility 0 0.0 2 12.5 1 5.0 0 0.0 No reason mentioned 3 6.3 0 0.0 0 0.0 0 0.0 *Financial inaccessibility included “high cost of care”, “lack of money to buy the prescribed medicines or glasses”, “lack of time due to work responsibilities”, “no entitlement anymore”, and “high cost of travelling.” †Ineffective eye care included “lack of benefit from prescribed treatment”, “adverse outcome”, “poor outcome of cataract surgery”, “lack of benefit from prescribed glasses”, “recurrence of the problem as the medication was stopped”, and “not being properly examined.” ‡ “Fears’’ cited included fears of operation, doctor, hospital, injections, closed and crowded spaces, and violence in the city. § Delayed assistance included long queues, a lengthy and tedious process of consultation/surgery, and “left unattended by staff for very long after cataract surgery” and “the person who introduced me there has died.” ¶Inadequate special support services included lack of support for those with “walking difficulties”, “language barriers” and those lacking escort. ∥Poor communication by staff included physician’s expression of anger during consultation, “not receiving the promised glasses”, “doctors promised to come again, but they did not come”, and “thought of being snubbed scared me.”

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6.4 Cataract surgical coverage and barriers to cataract surgery

CSC Person at visual acuity cut-offs of < 3/60, < 6/60, <6/18 and <6/12 was 88.1% (95% CI 77.8-94.7), 71.9 % (61.4-80.9), 53.5% (45.4-61.5), and 49.4 % (41.8-57.1), respectively (Table 43). CSC Person Inclusive gave markedly lower estimates than did CSC Person at all these cut-offs, 71.1% (60.1-80.5), 58.2% (48.4-67.5), 39.4% (32.8-46.3), and 37.6% (31.3- 44.2), respectively. The CSC eyes at VA cut-offs of < 3/60, < 6/60, <6/18 and <6/12 were 77.1% (70.5-82.9), 62.5 % (55.9-68.7), 37.9% (33.0-42.9), and 35.0% (30.4-39.8). Coverage at visual acuity cut-off of < 3/60 was slightly higher among men than women while the opposite was the case at the other three cut-offs. However, the differences by gender were not statistically significant. There were marked disparities by ethnicity with ethnic Bengalis having some of the lowest access rates (Table 44); CSC Person, Inclusive and Eyes among Bengalis was only 28.6% (8.4-58.1), 23.5% (6.8-49.9) and 30.3 %(15.6-48.7) at cut-off of <6/60 and 18.5%(6.3-38.1), 12.8% (4.3-27.4), and 14.9% (7.4-25.7) at cut-off of <3/60. Individuals describing their household financial status as “poor/fragile” compared with “fine” had a substantially lower coverage at all four thresholds of vision loss (Table 45). However, these different did not reach statistical significance. CSC did not vary much by income levels. Of 638 persons included in this study, 181 had visually significant cataract (VA<6/12) in one or both eyes. Barriers to the uptake of cataract surgery were examined among them (Table 46 through Table 48); 30.9 % respondents cited one reason, 50.8 % two reasons, 15.5% three reasons, and 2.8% four reasons not having had cataract surgery. Overall, the most commonly cited barriers were lack of awareness of cataract (63.5% or 115/181), financial hardships (40.3%), perceived lack of need (32.6), “fears” (17.7%), and distrust in health systems (12.2%), followed by co-existing health problems (7.7%), health seeking behaviour/belief problems (4.4%), social support constraints (3.3%), waiting for cataract to ripen (3.3%), and “cultural” issues (2.8%). Of those reporting being unaware of their cataract, the vast majority (78.3% or 90/115) had never seen an eye doctor in the past. Ethnic Bengalis, compared with other ethnic groups, were significantly more likely to be ‘unaware’ of having cataract (P=0.042) or report financial hardships (P=0.021) as a barrier to cataract surgery (Table 47). Perceived lack of need was highly prevalent in this population, in particular among men. A greater percentage of men than women reported no or low need to undergo 151

surgery (40.7% versus 26.0%, P=0.035; Table 46). By contrast, a significantly higher percentage of women than men had “fears”, especially of cataract surgery and its poor outcome (27.0% versus 6.2%, P<0.001). Of all 11 barriers cited, “fears” and “perceived lack of need” were the only ones that differed significantly between men and women. None of the participants cited lack of availability of cataract surgical services or being “unaware of eye service location” while only four of them cited geographic barriers. As shown Table 48, individuals describing their household financial status as “poor/fragile” compared with “fine” were three times more likely to cite financial hardships as a reason for not receiving cataract surgery(44.8 % vs. 14.8%; P=0.003). Other barriers did not significantly differ for self-reported financial status of the household. Perceived barriers did not vary by income.

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Table 43 Cataract surgical coverage by gender

VA Men Women All Cataract surgical Coverage* Coverage Coverage threshold coverage type % [95% CI] % [95% CI] % [95% CI]

Person 91.7 [73.0, 99.0] 86.0 [72.1, 94.7] 88.1 [77.8, 94.7] Person Inclusive 75.9 [56.5, 89.7] 68.5 [54.4, 80.5] 71.1 [60.1, 80.5]

<3/60 Eyes 80.6 [69.5, 88.9] 75.0 [66.1, 82.6] 77.1 [70.5, 82.9]

Person 66.7 [49.0, 81.4] 75.5 [61.7, 86.2] 71.9 [61.4, 80.9] Person Inclusive 55.8 [39.9, 70.9] 59.7 [47.0, 71.5] 58.2 [48.4, 67.5]

<6/60 Eyes 60.4 [49.9, 70.3] 64.0 [55.3, 72.0] 62.5 [55.9, 68.7]

Person 50.0 [37.6, 62.4] 56.2 [45.3, 66.7] 53.5 [45.4, 61.5] Person Inclusive 36.6 [26.8, 47.2] 41.7 [32.7, 51.0] 39.4 [32.8, 46.3]

<6/18 Eyes 34.5 [27.4, 42.2] 40.5 [33.8, 47.4] 37.9 [33.0, 42.9]

Person 45.5 [34.1, 57.2] 52.6 [42.2, 62.8] 49.4 [41.8, 57.1] Person Inclusive 35.7 [26.3, 46.0] 38.9 [30.5, 47.8] 37.6 [31.3, 44.2] <6/12 Eyes 32.0 [25.3, 39.4] 37.3 [31.1, 43.9] 35.0 [30.4, 39.8] *Cataract surgical coverage (CSC) was defined as the proportion (%) of persons or eyes needing cataract surgery that actually received it. The formula used to calculate CSC Person was: (x + y)/(x + y + z)*100, where x = number of persons with cataract surgery in one eye and operable cataract in the other eye, y = number of persons with cataract surgery in both eyes, and z = number of persons with bilateral operable cataract. The formula used to calculate CSC Person Inclusive was: (x + y)/(w + x + y + z)*100, where w = number of persons with operable cataract in one eye and no cataract surgery in the other eye. The formula used to calculate CSC eyes was: a/(a + b)*100 where a = number of (pseudo) aphakic eyes and b = number of eyes with operable cataract.

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Table 44 Cataract surgical coverage by ethnicity

Kutchi Bengali Sindhi Others†

Cataract surgical Coverage* Coverage Coverage Coverage VA threshold VA coverage % [95% CI] % [95% CI] % [95% CI] % [95% CI]

Person 91.8 [80.4, 97.7] 57.1 [18.4, 90.1] 90.0 [55.5, 99.7] 100 [2.5, 100]

Person

Inclusive 80.4 [67.6, 89.8] 36.4 [10.9, 69.2] 75.0 [42.8, 94.5] 25.0 [0.6, 80.6] <3/60 Eyes 83.7 [76.4, 89.5] 50.0 [27.2, 72.8] 70.4 [49.8, 86.2] 50.0 [11.8, 88.2]

Person 82.0 [70.0, 90.6] 28.6 [8.4, 58.1] 81.8 [48.2, 97.7] 33.3 [0.8, 90.6]

Person

Inclusive 68.5 [56.6, 78.9] 23.5 [6.8, 49.9] 60.0 [32.3, 83.7] 20.0 [0.5, 71.6] <6/60 Eyes 71.1 [63.4, 78.0] 30.3 [15.6, 48.7] 61.3 [42.2, 78.2] 33.3 [7.5, 70.1]

Person 66.3 [56.1, 75.6] 18.5 [6.3, 38.1] 52.0 [31.3, 72.2] 14.3 [0.4, 57.9]

Person

Inclusive 50.4 [41.5, 59.3] 12.8 [4.3, 27.4] 40.6 [23.7, 59.4] 7.7 [0.2, 36.0] <6/18 Eyes 47.7 [41.2, 54.2] 14.9 [7.4, 25.7] 32.8 [21.0, 46.3] 14.3 [3.0, 36.3]

Person 62.0 [52.2, 71.2] 16.7 [5.6, 34.7] 46.4 [27.5, 66.1] 12.5 [0.3, 52.7]

Person

Inclusive 49.3 [40.6, 58.0] 12.2 [4.1, 26.2] 33.3 [19.1, 50.2] 7.7 [0.2, 36.0] <6/12 Eyes 44.8 [38.6, 51.2] 13.9 [6.9, 24.1] 27.9 [17.7, 40.1] 13.6 [2.9, 34.9] *Cataract surgical coverage (CSC) was defined as the proportion (%) of persons or eyes needing cataract surgery that actually received it. The formula used to calculate CSC Person was: (x + y)/(x + y + z)*100, where x = number of persons with cataract surgery in one eye and operable cataract in the other eye, y = number of persons with cataract surgery in both eyes, and z = number of persons with bilateral operable cataract. The formula used to calculate CSC Person Inclusive was: (x + y)/ (w + x + y + z)*100, where w = number of persons with operable cataract in one eye and no cataract surgery in the other eye. The formula used to calculate CSC eyes was: a/ (a + b)*100 where a = number of (pseudo) aphakic eyes and b = number of eyes with operable cataract. † Others included Barmis, Balochs, Muhajirs, Pakhtuns and Punjabis.

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Table 45 Cataract surgical coverage by self-reported financial status of the household

Self-reported financial status of the household† “Poor/Fragile” “Fine” All

Coverage* Coverage* Coverage* VA threshold VA Cataract surgical coverage* % [95% CI] % [95% CI] % [95% CI]

Person 86.2 [74.6, 93.9] 100 [66.4, 100] 88.1 [77.8, 94.7] Person Inclusive 70.4 [58.4, 80.7] 75.0 [42.8, 94.5] 71.1 [60.1, 80.5]

<3/60 Eyes 76.9 [69.6, 83.2] 78.6 [59.0, 91.7] 77.1 [70.5, 82.9]

Person 69.6 [58.2, 79.5] 90.0 [55.5, 99.7] 71.9 [61.4, 80.9] Person Inclusive 56.1 [45.7, 66.1] 75.0 [42.8, 94.5] 58.2 [48.4, 67.5]

<6/60 Eyes 60.6 [53.5, 67.4] 75.9 [56.5, 89.7] 62.5 [55.9, 68.7]

Person 50.4 [41.7, 59.0] 75.0 [50.9, 91.3] 53.5 [45.4, 61.5] Person Inclusive 37.7 [30.7, 45.2] 50.0 [31.3, 68.7] 39.4 [32.8, 46.3]

<6/18 Eyes 37.0 [31.8, 42.5] 43.1 [29.3, 57.8] 37.9 [33.0, 42.9]

Person 47.0 [38.9, 55.3] 65.2 [42.7, 83.6] 49.4 [41.8, 57.1] Person Inclusive 36.2 [29.5, 43.4] 45.5 [28.1, 63.6] 37.6 [31.3, 44.2]

<6/12 Eyes 34.5 [29.5, 39.6] 38.6 [26.0, 52.4] 35.0 [30.4, 39.8] *Cataract surgical coverage (CSC) was defined as the proportion (%) of persons or eyes needing cataract surgery that actually received it. The formula used to calculate CSC Person was: (x + y)/ (x + y + z)*100, where x = number of persons with cataract surgery in one eye and operable cataract in the other eye, y = number of persons with cataract surgery in both eyes, and z = number of persons with bilateral operable cataract. The formula used to calculate CSC Person Inclusive was: (x + y)/ (w + x + y + z)*100, where w = number of persons with operable cataract in one eye and no cataract surgery in the other eye. The formula used to calculate CSC eyes was: a/ (a + b)*100 where a = number of (pseudo) aphakic eyes and b = number of eyes with operable cataract. † Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: ‘‘fine’’ and ‘‘poor/fragile.’’

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Table 46 Gender differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181) Male Female Total n=81 n=100 n=181 Self-Perceived Barrier* Freq [%] Freq [%] Freq [%] P† Unaware of cataract 53 [65.4] 62 [62.0] 115 [63.5] 0.633 Financial hardships‡ 36 [44.4] 37 [37.0] 73 [40.3] 0.310 Perceived lack of need§ 33 [40.7] 26 [26.0] 59 [32.6] 0.035 “Fears”‣ 5 [6.2] 27 [27.0] 32 [17.7] <0.001 Distrust in health systems∥ 9 [11.1] 13 [13.0] 22 [12.2] 0.699 Co-existing health problems 6 [7.4] 8 [8.0] 14 [7.7] 0.882 Health seeking behaviour/ belief problems** 5 [6.2] 3 [3.0] 8 [4.4] 0.470 Social support constraints†† 2 [2.5] 4 [4.0] 6 [3.3] 0.693 Waiting for the cataract to “ripen” 3 [3.7] 3 [3.0] 6 [3.3] 1.000 “Cultural” issues‡‡ 1 [1.2] 4 [4.0] 5 [2.8] 0.382 Geographic access issues 1 [1.2] 3 [3.0] 4 [2.2] 0.629 *Respondents could indicate more than one reason, hence, percentages add up to more than 100%. Of 181 participants with visually significant cataract (PVA<6/12) in one or both eyes, 30.9 % cited one, 50.8 % cited two, and 15.5% cited three, and 2.8% cited four reasons for not having had cataract surgery. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. ‡ Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. § Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. ‣“Fears” cited included “fears” of operation or its poor outcome, doctor, hospital, injections, closed and crowded spaces, and violence in the city. ∥Distrust in health systems included previous bad experiences with the service, such as poor outcome of cataract surgery and last minute cancellation of surgery due to power outages or non- fulfillment of promises made by the health care providers. ** Health seeking behaviour/belief problems included fatalistic attitudes and ‘‘old age’’, belief that nothing can be done about decreased vision/eye problems, and “eye problem is due to some evil spirit.” ††Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. ‡‡”Cultural” reasons included Iddah or iddat (period of compulsory waiting after the death of husband) or purdah.

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Table 47 Ethnic differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181) Kutchi Bengali Sindhi Others n=98 n=37 n=34 n=12 P† Self-Perceived Barrier* Freq [%] Freq [%] Freq [%] Freq [%] Unaware of cataract 54 [55.1] 30 [81.1] 23 [67.6] 8 [66.7] 0.042 Financial hardships‡ 38 [38.8] 22 [59.5] 8 [23.5] 5 [41.7] 0.021 Perceived lack of need§ 30 [30.6] 10 [27.0] 12 [35.3] 7 [58.3] 0.219 “Fears”‣ 21 [21.4] 4 [10.8] 5 [14.7] 2 [16.7] 0.501 Distrust in health systems∥ 15 [15.3] 4 [10.8] 3 [8.8] 0[0] … Co-existing health problems 6 [6.1] 5 [13.5] 2 [5.9] 1 [8.3] … Health seeking behaviour/belief 3 [3.1] 2 [5.4] 3 [8.8] 0 [0] … problems** Social support constraints†† 1 [1.0] 4 [10.8] 1 [2.9] 0 [0] … Waiting for the cataract to “ripen” 3 [3.1] 0 [0] 3 [8.8] 0 [0] … “Cultural” issues ‡‡ 2 [2] 1 [2.7] 2 [5.9] 0 [0] … Geographic access issues 1 [1] 1 [2.7] 1 [2.9] 1 [8.3] … *Respondents could indicate more than one reason, hence, percentages add up to more than 100%. Of 181 participants with visually significant cataract (VA<6/12) in one or both eyes, 30.9 % cited one, 50.8 % cited two, and 15.5% cited three, and 2.8% cited four reasons for not having had cataract surgery. †P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. ‡ Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. • Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. ‣“Fears” cited included “fears” of operation or its poor outcome, doctor, hospital, injections, closed and crowded spaces, and violence in the city. ∥Distrust in health systems included previous bad experiences with the service, such as poor outcome of cataract surgery and last minute cancellation of surgery due to power outages or non-fulfillment of promises made by the health care providers. ** Health seeking behaviour/belief problems included fatalistic attitudes and ‘‘old age’’, belief that nothing can be done about decreased vision/eye problems, and “eye problem is due to some evil spirit.” ††Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. ‡‡”Cultural” reasons included Iddah or iddat (period of compulsory waiting after the death of husband) or purdah.

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Table 48 Socio-economic differences in self-perceived barriers to cataract surgery among survey participants with unoperated cataract in one or both eyes (n= 181). Self-reported financial status of the household* “Fine” “Poor/fragile” n=27 n=154 P‡ Self-perceived barrier† Freq [%] Freq [%] Unaware of cataract 16 [59.3] 99 [64.3] 0.617 Financial hardships§ 4 [14.8] 69 [44.8] 0.003 Perceived lack of need¶ 10 [37.0] 49 [31.8] 0.594 “Fears”∥ 7 [25.9] 25 [16.2] 0.223 Distrust in health systems** 6 [22.2] 16 [10.4] 0.083 Co-existing health problems 3 [11.1] 11 [7.1] 0.443 Health seeking behaviour/belief problems†† 1 [3.8] 7 [4.5] 0.844 Social support constraints‡‡ 0 [0] 6 [3.9] … Waiting for the cataract to “ripen” 0 [0] 6 [3.9] … “Cultural” issues§§ 0 [0] 5 [3.2] … Geographic access issues 1 [3.8] 3 [1.9] 0.479 *Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into two categories: ‘‘fine’’ and ‘‘poor/fragile.’’ †Respondents could indicate more than one reason, hence, percentages add up to more than 100%. Of 181 participants with visually significant cataract (VA<6/12) in one or both eyes, 30.9 % cited one, 50.8 % cited two, and 15.5% cited three, and 2.8% cited four reasons for not having had cataract surgery. ‡ P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher’s exact test (2-tailed) was used. P < 0.05 indicates statistical significance. •Financial hardships included ‘‘lack of money to afford eye care’’ and lack of time due to work responsibilities. ‣“Perceived lack of need included ‘‘did not have an eye problem,’’ vision was fine, eyes were fine/healthy, no need felt, or the need was not great. ∥Fears” cited included “fears” of operation or its poor outcome, doctor, hospital, injections, closed and crowded spaces, and violence in the city. **Distrust in health systems included previous bad experiences with the service, such as poor outcome of cataract surgery and last minute cancellation of surgery due to power outages or non- fulfillment of promises made by the health care providers. ††Health seeking behaviour/belief problems included fatalistic attitudes and ‘‘old age’’, belief that nothing can be done about decreased vision/eye problems, and “the eye problem is due to some evil spirit.” ‡‡Social support constraints included lack of someone at home to take care of kids/patient/young daughters, ‘‘difficulty walking,’’ language barriers, ‘‘lack of escort,’’ and anxiety. ••”Cultural” reasons included Iddah or iddat (period of compulsory waiting after the death of husband) or purdah.

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6.5 Cataract surgery and its outcomes

Of 638 adults 50 years of age or older who participated in the study, 97 (41 men and 56 women), had undergone cataract surgery in one or both eyes. 49 persons (50.5%) had undergone first-eye surgery only and 48 (49.5%) had undergone second eye surgery.

6.5.1 Prevalence of cataract surgery

Overall, 7.7% (95% CI 5.3–11.2) of the survey participants (n=638) had undergone surgery in one eye and nearly a similar proportion (7.5%, 95% CI 5.7–9.9) in both eyes (Table 49). While both women and men had similar rates of cataract surgery in one eye— 7.6% (95% CI 5.2–11.2) vs. 7.7% (95% CI 5.3–11.2)—a significantly higher proportion of women had undergone second eye surgery compared with men (9.6%, 95% CI 6.8–13.3 vs. 5.4% 95% CI 3.4–8.6; P < 0.05). As age increased, the prevalence of cataract surgery also increased significantly, with individuals 70 years of age or older having the highest rate of cataract surgery in one eye (17.7%) or both eyes (15.9%). The rates of unilateral or bilateral cataract surgery did not vary significantly by self-reported financial status of the household or daily per capita income of the household. The rate of cataract surgery in one or both eyes was the lowest among Bengalis (1.2% and 2.4%, respectively) and was 6–10 times lower than ethnic Kutchis. A further analysis was performed to examine the proportion of operated eyes in Bengalis compared with other ethnic groups (Table 50). The rate of operated eyes was significantly lower among Bengalis (3.0% or 10/336 eyes) than Sindhi (7.5% or 19/254 eyes) and Kutchis (18.6% or 113/608 eyes). There were also significant differentials in the rate of cataract surgery (eyes) by gender (P<0.05), age (P<0.001), and socioeconomic status whether represented by work status, educational status, income levels, and self-rated financial status of the household. Of 145 cataract surgeries, 133 (91.7%) were with IOL implantation. There were no significant differences in the prevalence of IOL surgery by marital status, ethnicity and socioeconomic status. Women had a slightly lower prevalence of IOL surgery than men. However, this difference was not statistically significant (89.7% vs. 94.8%; P=0.268). Time since surgery was the only significant predictor of surgery with IOL implantation when all variables were considered (P<0.001). The rate of IOL surgery was 70.4% until 2000, but increased to 96% in 2001–2006 and to 97.1% in 2007–2009.

159

A striking finding of the analysis was that women underwent cataract surgery at a much younger age than men (Figure 12). The median age at which women had surgery was 57.0 years (range, 35 to 88 years) whereas the median age at which men underwent cataract surgery was 63 years (range, 40–80 years). However, the 6 year difference was not significant at 0.05 levels (P = 0.78).

6.5.2 Outcome of cataract surgery

Cataract surgical outcomes assessed included vision (presenting and best-corrected with a reduced logMAR chart), satisfaction with surgery, astigmatism, and pupil shape. Results for each of the four outcome measures are reported below and in the Tables.

6.5.2.1 Visual outcome of cataract surgery

Almost two-thirds (65.5%) of 145 operated eyes had some form of vision loss (PVA <6/12 (Table 51). Overall, 20.7%, 29.0% and 3.4% of the operated eyes had mild, moderate and severe visual impairment, respectively, while 12.4% eyes were blind. Among the 18 blind eyes, 5 had no light perception. When the data were classified according to WHO’s guidelines, 55.2%, 29.0% and 15.9% eyes had good, borderline and poor visual outcomes based on presenting vision, respectively (Table 52). With best correction, these values were: 68.3%, 18.6%, and 13.1%. Visual outcomes were substantially different by gender, with a significantly higher proportion of women’s than men’s eyes having PVA of <6/12 (74.7% vs. 51.7 %; P < 0.007) or PVA of <6/18 (57.5% vs. 25.9%; P < 0.001). These differences remained significant even after best correction. As shown in Table 53, three covariates - gender, self-reported financial status of the household, and IOL surgery - had a P ≤ 0.2 in the univariate GEE analysis of factors associated with suboptimal visual outcome (PVA < 6/18). In the final analysis, gender was the only significant independent predictor of visual outcome. Women’s eyes were 4.38 times more likely to have suboptimal visual outcome compared with men’s eyes (odds ratio 4.38, 95% CI 1.96-9.79; P < 0.001) after adjusting for the effect of self-reported financial status of the household. IOL surgery was not included in the final model because it did not have an appreciable effect in the multivariable analysis. Of the 30 eyes with PVA of <6/12-6/18, 23 (76.7%) were the result of uncorrected refractive error, 3 (10 %) posterior capsular opacification (PCO), 1 (3.3%) corneal scar, 1 (3.3%) amblyopia, and 2 (6.7%) age-related macular degeneration. Similarly, of the 65 eyes with PVA of <6/18 on presentation, 9 (13.8%) were the result of uncorrected 160

refractive error, 26 (40 %) PCO, 2 (3.1%) corneal scar, 4 (6.2%) phthisis, 3 (4.6%) high cylindrical error, 2 (3.1%) glaucoma, 1 (1.5%) surgery-related secondary glaucoma, 5 (7.7%) optic neuropathy, 7 (10.8%) age-related macular degeneration, 2 (3.1%) retinal detachment, 1 (1.5%) central retinal vein occlusion, 2 (3.1%) diabetic retinopathy, and 1 (1.5%) maculopathy. All four eyes with small shrunken globe and one eye with total corneal scar were attributable to endophthalmitis. Women’s eyes were 1.3 times more likely to have suboptimal visual outcome due to PCO than men’s eyes, but this difference was not statistically significant. Analysis of other causes by gender could not be undertaken because of inadequate cause-specific data.

6.5.2.2 Dissatisfaction with cataract surgery

Overall, more than one fourth (40/144) of cataract surgeries resulted in dissatisfaction (Table 54). Understandably, those with poor or borderline visual outcomes (PVA < 6/18) were substantially more likely to be dissatisfied than those who had a good visual outcome (VA ≥ 6/18; 50.0% vs. 10.0%; P < 0.001). Variation in dissatisfaction rate by household financial status was marginally significant (P=0.061) while that by current age (P=0.802), gender (P= 0.570), ethnicity (P=0.110), daily per capita income of the household (P=0.890), time since surgery (P=0.838), and IOL surgery (P = 0.632) were not significant. Variables evaluated in the multivariable GEE analysis were: visual outcome, self-reported financial status of the household, and ethnicity. Household financial status was not included in the final model because it had no appreciable effect. The final model showed that those with poor or borderline visual outcome compared with a good one were more likely to be dissatisfied with the outcome of cataract surgery (adjusted OR 9.71, 95% CI 3.92-24.03; P<0.001)—as were ethnic Kutchis compared with non-Kutchis (adjusted OR 2.99, 95% CI 0.91-9.84; P=0.071).

6.5.2.3 Pupil shape

As shown in Table 55, 137 operated eyes were included in this analysis. 6 eyes could not be included because they had corneal scar, corneal blood staining or phthisis bulbi while 2 eyes had missing data. Overall, 21.9% (30/137) eyes had irregular pupil. A disproportionately high percentage of eyes with post-operative PVA of <6/18 or with aphakia had irregular pupil. A higher proportion of women’s than men’s eyes had irregular pupil (26.5 % vs. 14.8%). Of the 8 covariates examined in relation to the presence of irregular pupil in the univariate GEE analysis, post-operative PVA, sex, and IOL 161

surgery had a P ≤0.2 and were then evaluated in the multivariable GEE model. After adjustment for sex, post-operative VA achieved borderline statistical significance (adjusted OR 2.36, 95% CI 1.00-5.59; P=0.051). IOL surgery did not show any appreciable effect and was not retained in the final model.

6.5.2.4 Refractive outcome

As shown in Table 56, astigmatism was evaluated in 113 operated eyes. 30 eyes did not undergo best-correction owing to media opacities or blindness while 2 eyes were of participants who were unable to attend the cluster examination center. Their visual acuity with pinhole, where obtainable, was considered as BCVA. Of 113 eyes, 48 (42.5%) had mild to moderate astigmatism while a quarter (23.9%) had severe or very severe astigmatism. When analysed by gender, a higher proportion of women’s eyes had severe or very severe astigmatism than men’s eyes (27.5% vs. 18.2%). However, this difference was not statistically significant (P=0.258).

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Table 49 Gender, ethnic and socio-economic differences in the rate of cataract surgery among survey participants (n=638). One eye Both eyes One/ both surgery surgery eyes surgery Variable n Freq [%] Freq [%] Freq [%] All 638 49 [7.7] 48 [7.5] 97 [15.2] Age (years) 50–59 347 15 [4.3] 14 [4] 29 [8.4] 60–69 178 14 [7.9] 16 [9] 30 [16.9] ≥ 70 113 20 [17.7] 18 [15.9] 38 [33.6] P value* <0.001 <0.001 <0.001 Sex Male 314 24 [7.6] 17 [5.4] 41 [13.1] Female 324 25 [7.7] 31 [9.6] 56 [17.3] P value 0.972 0.047 0.137 Ethnicity Kutchi 304 37 [12.2] 38 [12.5] 75 [24.7] Bengali 168 2 [1.2] 4 [2.4] 6 [3.6] Sindhi 127 9 [7.1] 5 [3.9] 14 [11.0] Others‡ 39 1 [2.6] 1 [2.6] 2 [5.1] P value <0.001 <0.001 <0.001 Work status Work 524 34 [6.5] 31 [5.9] 65 [12.4] Retired/do not do any work 66 9 [13.6] 11 [16.7] 20 [30.3] Unable to work 48 6 [12.5] 6 [12.5] 12 [25] P value 0.052 0.003 <0.001 Education Any† 100 5 [5.0] 2 [2.0] 7 [7.0] None 538 44 [8.2] 46 [8.6] 90 [16.7] P value 0.273 0.023 0.013 *P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. P < 0.05 indicates statistical significance. ‡Others included 8 ethnic Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. †Any education included one or more years of school-based education.

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Table 49 (Continued) Gender, ethnic and socio-economic differences in the rate of cataract surgery among survey participants (n=638)

One eye Both eyes One/ both eyes n surgery surgery surgery Variable Freq [%] Freq [%] Freq [%] Self-reported financial status of the household§ “Fine” 123 10 [8.1] 6 [4.9] 16 [13.0] “Poor/fragile” 515 39 [7.6] 42 [8.2] 81 [15.7] P value* 0.835 0.216 0.45 Daily per capita income of household, US dollars¶ ≤ 0.36 152 15 [9.9] 18 [11.8] 33 [21.7] 0.37–0.52 168 11 [6.5] 13 [7.7] 24 [14.3] 0.53–0.77 159 10 [6.3] 8 [5.0] 18 [11.3] ≥ 0.78 159 13 [8.2] 9 [5.7] 22 [13.8] P value 0.611 0.098 0.066 *P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. P < 0.05 indicates statistical significance. §Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. ¶The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 50 Gender, ethnic and socio-economic differences in the proportion of operated eyes among survey participants (n= 1276 eyes). Total Eyes with Variable Eyes cataract surgery P* All 1276 145 [11.4] Age group <0.001 50–59 694 43 [6.2] 60–69 356 46 [12.9] ≥ 70 226 56 [24.8] Sex 0.016 Male 628 58 [9.2] Female 648 87 [13.4] Ethnicity <0.001 Kutchi 608 113 [18.6] Bengali 336 10 [3.0] Sindhi 254 19 [7.5] Others† 78 3 [3.8] Work status <0.001 Work 1048 96 [9.2] Retired/do not do any work 132 31 [23.5] Unable to work 96 18 [18.8] Education <0.001 Any‡ 200 9 [4.5] None 1076 136 [12.6] Self-reported financial status of the household§ <0.001 “Fine” 246 22 [8.9] “Poor/Fragile” 1030 123 [11.9] Daily per capita income of household, US dollars¶ ≤ 0.36 304 51 [16.8] 0.022 0.37–0.52 336 37 [11.0] 0.53–0.77 318 26 [8.2] ≥ 0.78 318 31 [9.7] *P values were computed by Chi-square test. Where the expected cell values in the table fell below 5, Fisher's Exact test (two-tailed) was used. P < 0.05 indicates statistical significance. † Others included 8 ethnic Barmis, 3 Balochs, 8 Muhajirs, 18 Pakhtuns and 2 Punjabis. ‡Any education included one or more years of school-based education. §Financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. ¶The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Figure 12 Box plot (upper) of age at the time of surgery in men and women; Dot plot(lower) of distribution of age at the time of surgery by sex

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Table 51 Presenting and best-corrected visual acuity in eyes that had undergone cataract surgery (n= 145 eyes). Men’s eyes Women’s eyes All eyes Variable n =58 n = 87 n =145 IOL Surgery Freq. [%] Freq. [%] Freq. [%] Yes 55 [94.8] 78 [89.7] 133 [91.7] No 3 [5.2] 9 [10.3] 12 [8.3] Presenting vision No vision impairment ≥ 6/12 28 [48.3] 22 [25.3] 50 [34.5] Mild vision impairment <6/12–6/18 15 [25.9] 15 [17.2] 30 [20.7] Moderate vision impairment <6/18–6/60 10 [17.2] 32 [36.8] 42 [29.0] Severe vision impairment <6/60–3/60 1 [1.7] 4 [4.6] 5 [3.4] Blindness 1 <3/60–1/60 0 [0.0] 3 [3.4] 3 [2.1] Blindness 2 <1/60–Light Perception 2 [3.4] 8 [9.2] 10 [6.9] Blindness 3 No Light Perception 2 [3.4] 3 [3.4] 5 [3.4] Best-corrected vision No vision impairment ≥ 6/12 41 [70.7] 41 [47.1] 82 [56.6] Mild vision impairment <6/12–6/18 6 [10.3] 11 [12.6] 17 [11.7] Moderate vision impairment <6/18–6/60 7 [12.1] 20 [23.0] 27 [18.6] Severe vision impairment <6/60–3/60 0 [0.0] 4 [4.6] 4 [2.8] Blindness 1 <3/60–1/60 0 [0.0] 2 [2.3] 2 [1.4] Blindness 2 <1/60–Light Perception 2 [3.4] 6 [6.9] 8 [5.5] Blindness 3 No Light Perception 2 [3.4] 3 [3.4] 5 [3.4] Dissatisfaction with surgery Yes 15 [25.9] 25 [29.1] 40 [27.8] No 43 [74.1] 61 [70.9] 104 [72.2] The WHO recommends that more than 85% of cataract surgeries achieve a good visual outcome (presenting visual acuity: 6/18 or better) with fewer than 10% having borderline (<6/18-6/60) and less than 5% having poor (< 6/60) outcomes at presentation. With best correction, these values should be > 90, < 5 and < 5, respectively.

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Table 52 Visual outcome of cataract surgery by selected characteristics (n= 145 eyes).

Visual outcome (based on presenting visual Eyes acuity) Examined Good Borderline Poor ≥ 6/12 <6/12–6/18 <6/18–6/60 <6/60 Variable Freq [%] Freq [%] Freq [%] Freq [%] All 145 50 [34.5] 30 [20.7] 42 [29.0] 23 [15.9] Current age, years 50–59 43 15 [34.9] 5 [11.6] 15 [34.9] 8 [18.6] ≥ 60 102 35 [34.3] 25 [24.5] 27 [26.5] 15 [14.7] Ethnicity Kutchi 113 37 [32.7 25 [22.1] 32 [28.3] 19 [16.8] Non-Kutchi* 32 13 [40.6] 5 [15.6] 10 [31.3] 4 [12.5] Education† Any 9 6 [66.7] 1 [11.1] 1 [11.1] 1 [11.1] None 136 44 [32.4] 29 [21.3] 41 [30.1] 22 [16.2] Self-reported financial status of the household‡ “Fine” 22 11 [50.0] 5 [22.7] 4 [18.2] 2 [9.1] “Poor/Fragile” 123 39 [31.7] 25 [20.3] 38 [30.9] 21 [17.1] Daily per capita income of the household, US dollars§ ≤ 0.52 88 26 [29.5] 21 [23.9] 31 [35.2] 10 [11.3] ≥ 0.53 57 24 [42.1] 9 [15.8] 11 [19.3] 13 [22.8] Time since surgery <4 years 68 29 [42.6] 12 [17.6] 18 [26.5] 9 [13.2] ≥ 4 years 77 21 [27.3] 18 [23.4] 24 [31.2] 14 [18.2] IOL surgery Yes 133 49 [36.8] 27 [20.3] 41 [30.8] 16 [12.0] No 12 1 [8.3] 3 [25.0] 1 [8.3] 7 [58.3] *Non-Kutchis included Sindhis (n=19 eyes), Bengalis (n=10 eyes) and Others (n=3 eyes). †Any education included one or more years of school-based education. ‡Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. §The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 53 Uni- and multivariable GEE analyses of predictors of suboptimal visual outcome of cataract surgery (PVA < 6/18 [n= 145 eyes]). n PVA <6/18 Crude odds ratio Adjusted odds Variable Freq [%] [95% CI] ratio [95% CI] All 145 65 [44.8] Current age, years 50-59 43 23 [53.5] 1.0 ≥ 60 102 42 [41.2] 1.62 [0.74-3.54] P value* 0.224 Sex Male 58 15 [25.9] 1.0 1.0 Female 87 50 [57.5] 4.02 [1.84-8.80] 4.38 [1.96-9.79] P value <0.001 <0.001 Ethnicity† Kutchi 113 51 [45.1] 1.08 [0.46-2.56] Non-Kutchi 32 14 [43.8] 1.0 P value 0.858 Self-reported financial status of the household‡ “Fine” 22 6 [27.3] 1.0 1.0 “Poor/Fragile” 123 59 [48.0] 2.45 [0.84-7.16] 3.01 [0.98-9.27] P value 0.103 0.055 Daily per capita income of the household, US dollars§ ≤ 0.52 88 41 [46.6] 1.34 [0.64-2.81] ≥ 0.53 57 24 [42.1] 1.0 P value 0.432 Time since surgery < 4 years 68 27 [39.7] 1.0 ≥ 4 years 77 38 [49.4] 1.55 [0.77-3.15] P value 0.217 IOL surgery Yes 133 57 [42.9] 1.0 No 12 8 [66.7] 2.80 [0.72-10.69] P value 0.139 *The P values are from univariate and multiple logistic regression. P < 0.05 indicates statistical significance. †Non-Kutchis included Sindhis (n=19 eyes), Bengalis (n=10 eyes) and Others (n=3 eyes). ‡Self-reported financial status of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. §The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees).

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Table 54 Uni- and multivariable GEE analyses of predictors of dissatisfaction with cataract surgery (n=144 surgeries). Not satisfied Crude odds ratio Adjusted odds Variable n Freq [%] [95% CI] ratio [95% CI] All 144 40 [27.8] Current age, years 50–59 43 12 [27.9] 1.12 [0.48-2.62] ≥ 60 101 28 [27.7] 1.0 P value* 0.802 Sex Male 58 15 [25.9] 1.0 Female 86 25 [29.1] 1.26 [0.56-2.84] P value 0.570 Ethnicity† Kutchi 112 35 [31.3] 2.48 [0.81-7.59] 2.99 [0.91-9.84] Non-Kutchi 32 5 [15.6] 1.0 1.0 P value 0.110 0.071 Outcome of cataract surgery Good ≥ 6/18 80 8 [10.0] 1.0 1.0 Borderline or Poor <6/18 64 32 [50.0] 9.14 [3.75-22.26] 9.71 [3.92-24.03] P value <0.001 <0.001 Self-reported financial status of the household‡ “Fine” 22 2 [9.1] 1.0 “Poor/Fragile" 122 38 [31.1] 4.56 [0.93-22.25] P value 0.061 Daily per capita income of the household, US dollars§ ≤ 0.52 87 24 [27.6] 1.06 [0.47-2.37] ≥ 0.53 57 16 [28.1] 1.0 P value 0.890 Time since surgery < 4 years 68 20 [29.4] 1.08 [0.50-2.35] ≥ 4 years 76 20 [26.3] 1.0 P value 0.838 IOL surgery Yes 132 36 [27.3] 1.0 No 12 4 [33.3] 1.39 [0.36-5.28] P value 0.632 *The P values are from univariate and multiple logistic regression. †Non-Kutchis included Sindhis, Bengalis and Others. ‡Self-reported financial status of the household of the household was examined by asking survey participants how their household financial status was. Their responses to this open-ended question were grouped into 2 categories: “fine” and “poor/fragile”. §The distribution of survey participants into income groups is based on quartile analysis. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid-year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees). 170

Table 55 Prevalence of, and factors associated with, irregular pupil in the operated eyes (n=137 eyes). n Irregular Crude odds ratio Adjusted odds Variable pupil [95% CI] ratio [95% CI] Freq [%] Overall 137 30 [21.9] Age, years 50–59 42 12 [28.6] 1.70 [0.67-4.32] ≥ 60 95 18 [18.9] 1.0 P value 0.266 Sex Male 54 8 [14.8] 1.0 1.0 Female 83 22 [26.5] 2.09 [0.79-5.50] 1.50 [0.54-4.20] P value 0.137 0.441 Ethnicity Kutchi 105 24 [22.9] 1.36 [0.44-4.14] Non-Kutchi 32 6 [18.8] 1.0 P value 0.593 Self-reported financial status of the household “Fine” 22 4 [18.2] 1.0 “Poor/Fragile” 115 26 [22.6] 1.16 [0.34-4.02] P value 0.814 Daily per capita income of the household, US dollars ≤ 0.52 83 17 [20.5] 1.0 ≥ 0.53 54 13 [24.1] 1.17 [0.47-2.89] P value 0.735 Time since surgery < 4 years 65 13 [20.0] 1.0 ≥ 4 years 72 17 [23.6] 1.37 [0.57-3.28] P value 0.482 IOL surgery Yes 127 26 [20.5] 1.0 No 10 4 [40.0] 2.76 [0.65-11.66] P value 0.168 Presenting visual acuity ≥(Post 6/18-operative) 80 12 [15.0] 1.0 1.0 < 6/18 57 18 [31.6] 2.63 [1.17-5.92] 2.36 [1.00-5.59] P value 0.019 0.051

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Table 56 Prevalence of astigmatism as assessed in 113 eyes that had undergone cataract surgery among survey participants. Men’s eyes Women’s eyes All eyes

n=44 n=69 n=113 Degree of astigmatism [D cyl.] Freq [%] Freq [%] Freq [%] None [< -0.5] 15 [34.1] 23 [33.3] 38 [33.6] Mild [-0.5] 3 [6.8] 8 [11.6] 11 [9.7] Moderate [> -0.5 to -1.5] 18 [40.9] 19 [27.5] 37 [32.7] Severe [> -1.5 to -3.5] 8 [18.2] 16 [23.2] 24 [21.2] Very severe [> -3.5] 0 [0] 3 [4.3] 3 (2.7]

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6.6 Summary points of Chapter 6

. Survey population and their socio-demographic characteristics: Of the 700 sampled persons, 638 (91.1%) were interviewed and examined. Of study participants, 314 (49.2%) were men and 324 (50.8%) women; 304 (47.6%) were ethnic Kutchis, 168 (26.3%) Bengali and 127 (19.9%) Sindhis. Most participants belonged to small-scale marine fishing families. 82.2% were economically active, 10.3% were retired/did not do any work while another 7.5% reported not being able to work. Overall, 93.9% (95% CI 91.7-95.6) participants lived in extreme poverty (< US $1.25 per day), 80.7% reported their household financial status as “poor/fragile”, and 84.3% had no formal school-based education while only 4 (0.7%) had graduated from secondary or higher secondary school. . Burden of self-reported eye problems: Overall, 507 of 638 (79.5%) respondents reported having one or more eye problems/symptoms. Gender (adjusted OR = 1.81, 95% CI 1.22–2.68 for women vs. men; P=0.003) and self- reported financial status of the household (adjusted OR=1.80, 95% CI 1.15–2.82 for “poor/fragile” vs. “fine”; P=0.011) were significant predictors of having one or more self-reported eye problems/symptoms while increasing age, ethnicity, education, daily per capita income of the household, and work status were not. . Burden and causes of vision loss: The age-standardised prevalence of mild VI was 15.1 % (95% CI, 12.2%-17.9%), MSVI 23.2 % (19.8%-26.5%), and blindness 2.8% (1.4%-4.2%). There were marked gender disparities in vision loss in this population; 54% of all mild VI, 61 % MSVI and 81 % of all blindness occurred among women. Cataract accounted for 62.5% of all blindness and 54.7% MSVI while uncorrected refractive errors accounted for 30.7% and 70.3% of MSVI and mild VI, respectively. . Access to eye care services: Overall, 349 (54.7%; 95% CI, 50.8–58.6) of the participants had never had an eye examination. The common barriers to access identified included a perceived lack of or low need (176/349 or 50.4%), financial hardships (36.4%), ‘‘fears’’ (8.6%), and social support constraints (6.3%). Of those reporting a ‘‘lack of need,’’ 21.9% had significant vision loss. Financial hardships, ‘‘fears,’’ and social support constraints were more prevalent among women than men. Bengalis compared to Kutchis and Sindhis, and individuals with ‘‘poor/fragile’’ Self-reported financial status of the household compared to those 173

with ‘‘fine’’ status, were more likely to cite financial hardships. In the multivariable analysis, ethnicity was the strongest independent predictor of eye care utilisation, followed by self-reported eye problems and diabetes. Ethnic Bengalis were 4.2 times less likely (aOR 0.24, 95% CI 0.15–0.38; P<0.001) to have had an eye examination in the past than Kutchis. . Acceptability of eye care services: 218 survey participants who had their most recent eye examination within the previous 5 years were interviewed. Of these, 43.1% reported having no intention to visit the health care facility again or recommend it to their relatives or friends, if need be. Women compared with men, and individuals with VA < 6/12 than those with VA ≥ 6/12 were significantly more likely to report unwillingness to visit again or recommend to others. The principal reasons behind acceptability of care was “effectiveness of care’’ (53.2% or 66/124), followed by good communication (14.5%), financial accessibility (11.3%) while the main reasons behind unacceptability were financial inaccessibility (35.1% or 33/94) and ineffective eye care (29.8%). . Cataract surgical coverage: CSC Person, Person Inclusive and Eyes at visual acuity cut-offs of < 3/60, < 6/60, <6/18 and <6/12 were 88.1%, 71.9 %, 53.5%, 49.4 %; 71.1%, 58.2%, 39.4%, and 37.6%; and 77.1%, 62.5 %, 37.9%, and 35.0%, respectively. CSC Person Inclusive provided more accurate estimates of the proportion of people needing surgery in one or both eyes who actually received it. There were marked disparities in coverage based on ethnicity, with ethnic Bengalis having the lowest coverage of any ethnic group. . Outcomes of cataract surgery: A total of 145 eyes (of 97 persons) had undergone cataract surgery; 65.5% of the operated eyes had significant vision loss (PVA <6/12). Gender was the only significant independent predictor of visual outcome. Women’s eyes were 4.38 times more likely to have suboptimal visual outcome compared with men’s eyes (odds ratio 4.38, 95% CI 1.96-9.79; P < 0.001) after adjusting for the effect of self-reported financial status of the household. A higher proportion of women’s than men’s eyes had irregular pupil (26.5% vs. 14.8%) and severe/very severe astigmatism (27.5% vs. 18.2%). However, these differences did not reach statistical significance. Overall, more than one fourth (40/144) of cataract surgeries resulted in dissatisfaction. Visual outcome of cataract surgery was the only significant predictor of satisfaction (P <0.001).

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Chapter 7 DISCUSSION OF KEY STUDY FINDINGS

This chapter discusses the major findings of The Karachi Marine Fishing Communities Eye and General Health Survey (n=638). The study examined gender, ethnic and socioeconomic differences in the burden of vison loss, access to eye care services, cataract surgical coverage, and outcome of cataract surgery–as well as several other key dimensions of eye health–in the fishing populations in Keamari, Karachi, Pakistan (Box 6). This chapter is organised into 7 main sections (Figure 13) using the pathway from need assessment, to care (received or not) to outcome (good or not). Section 7.1 briefly discusses the socioeconomic situation of the communities surveyed. Section 7.2 presents a discussion of the burden and causes of vision impairment and blindness in this population and puts the findings into context within the wider literature. Section 7.3 discusses what eye care services are available and who has access to them. Section 7.4 discusses users' experiences and acceptability of eye care services. Section 7.5 discusses the extent to which cataract surgical services are reaching the selected population. Section 7.6 analyses barriers to the uptake of cataract surgery and enabling factors. Section 7.7 discusses cataract surgery outcomes, especially the substantially higher likelihood of poor outcome among women than men. In each section, the strengths and limitations of the study relevant to the particular eye health domain covered are presented along comparison with previous studies, policy implications, recommendations, and a short summary.

Box 6 The main research questions 1. What is the burden of vision impairment and blindness among adults aged ≥ 50 years in the marine fishing communities in Karachi, Pakistan? Who, within these communities, is most affected? 2. What is the status of access to eye care services and what determines access? What are the self-perceived barriers to the uptake of eye care services, including cataract surgery? 3. What is the acceptability of available eye care services from the users' perspective? 4. What are the quality and outcomes of cataract surgery in these communities?

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From blindness to

 Women had a significantly higher prevalence than men of both vision impairment and blindness. Of 16 blind persons, 13 were Disease women (Section 7.2). burden  There was no significant/very little variation by ethnicity and socioeconomic status.  Cataract accounted for 62.5% of the blindness (Section 7.2).

 Women had a significantly higher likelihood than men of having had an eye examination in both the past five years or ever (Section 7.3.1).  Women more than men favoured private eye care services over government provided services. Access to  Among obstacles to eye care, financial hardships, fears, and eye care social support constraints were more prevalent among women services than men (Section 7.3.2).  Bengalis compared to Kutchis and Sindhis, and individuals with “poor/fragile” self-reported financial status of the household compared to those with “fine” status, were more likely to cite financial hardships.

 The overall surgical coverage in the fishing communities was relatively high (Section 7.4). Cataract  Ethnicity was the only significant predictor of cataract surgical surgical coverage with ethnic Bengalis having a strikingly low coverage. coverage No significant differences by gender and socio-economic status were found.

 Gender was the only independent variable predictive of Outcome significant differences in visual outcome. of cataract  In the operated eyes, women were 4.38 times more likely to surgery have borderline or poor visual outcome compared with men (Section 7.6).

Recovery after surgery

Figure 13 Pathway of need assessment to outcome of interventions: survey findings summarised

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7.1 About the survey and the study population

To the best of our knowledge, this is the first cross-sectional survey to examine key eye health issues such as cataract-related vision impairment and blindness in a representative sample of adults 50 years of age or older in the fishing populations in Keamari, Karachi, Pakistan. We examined gender, ethnic and socioeconomic differences in the burden of cataract-related vision loss, access to eye care services, cataract surgical coverage, and outcome of cataract surgery—as well as several other eye health related issues. This population was chosen specifically because of its widely recognised marginalisation, neglect 280-282 and systematic invisibility or under-representation in health research.11,146

It is important to note that a high response rate was achieved (over 90%) despite the hard-to-reach nature of this population. This high response rate, consistent with vision impairment and blindness surveys in Pakistan 56,58,65,66 and other LMICs50,262,283 over the past two decades, was possible because of vigorous and unusually lengthy field work lasting more than a year. Time was needed to understand the context, build a trusting and caring relationship with the fishing communities, identify and train local female workers, enumerate households and adults of the eligible age group, and allow for the eligible men to return from fishing trips, which often lasted several weeks. A significant proportion of women in this community travel daily to neighbouring affluent areas to work as housemaids. They mostly return from work in the evening and it was only possible to enroll them over the weekends. There were additional challenges. Time was also needed to deal with loss of numerous work hours due to long power outages, the intense, widespread and unabated ethnic, political and sectarian violence in the city, which was compounded by road blockages caused by violent protests, strikes, and routine VIP movement.284,285

There were approximately four widows for every one widower in the sample. Many men marry women who are younger than they are, placing the latter at a greater chance of becoming a widow. A substantially greater proportion of widowers gets married soon after the death of their wives, while a greater proportion of widows stay single, catering for their children. Among Muslims, a man can have four wives at a time, and his death alone can make more than one woman a widow, but if one of his wives dies, he is not considered a widower.

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The present study, besides providing data on eye health status of the fishing populations in Keamari, Karachi, provides valuable insight into the socioeconomic status of these populations by bringing together quantitative data on poverty as well as qualitative understanding of the financial status of the households and the widespread and deep poverty experienced by these communities. All widely used indicators of socioeconomic disadvantage and deprivation such as extreme poverty, lack of education, poor housing conditions and overcrowding were far more prevalent in this population than the general population of the country (Table 57). For example, in 2009, 93.9% (95% CI, 92.0-95.7) of members of the selected communities lived in poverty, which is far higher than the national average (22.6%). Almost 80% of participants reported the financial situation of their households to be "poor/fragile.” This means the entire population has inadequate income to meet their basic needs such as food, housing, health and education. These findings are shocking, considering the fact that poverty has declined significantly in LMICs over the past 3 decades. It appears that significant gains achieved in poverty reduction in Pakistan—as in other LMICs in South Asia— are not reaching this Table 57 Socioeconomic status of the survey population, as compared with the national average for comparable age group! Present study National average (Adults aged≥ 50 years) for comparable age Education level* n = 638 group None 92.0 72.1 Primary 4.7 10.1 Middle 2.7 5.3 Secondary/higher secondary 0.6 12.4 Number of household members* ≤ 5 22.6 33.6 6–7 21.3 27.8 ≥ 8 56.1 38.6 Population living in poverty‡ Yes 93.9 22.6 No 6.1 77.4 * Data for comparison on educational attainment among people aged ≥ 50 years and number of household members are taken from Pakistan Demographic and Health Survey 2006–07 National Institute of Population Studies and Macro International Inc., Islamabad, Pakistan. † Poverty is defined as the percentage of population living on less than $1.25 per day. Information on income was collected in Pak rupees and for ease of comparison, converted into US dollars using mid- year exchange rate in 2009 (1 US dollar = 80.70 Pakistan Rupees). Data for comparison are taken from the World Development Indicators 2012, The World Bank, available at: http://data.worldbank.org/data- catalog/world-development-indicators.

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high-risk population. Unfortunately, aggregate poverty statistics hide important differences across population groups. Our study highlights the need for specific and explicit attention to fishing communities and other marginalised groups in national and international development policies including those launched to achieve eight MDGs, the first of which has been to reduce the 1990 poverty rate by half by 2015. Failure to do so will seriously undermine the true spirit of MDGs, driving the poorest of the poor to the periphery. Current debate concerning the Sustainable Development Goals (post-2015) reinforces the need to focus attention on addressing poverty, disparities and inequities. Multiple overlapping and reinforcing factors are responsible for the endemic poverty in these communities, including the seasonal nature of fishing and processing,

Box 7 Possible explanations for endemic poverty in fishing communities in Keamari, Karachi, Pakistan  Seasonal nature of commercial fishing  Lack of alternative employment during the off-season  Lack of supplementary income opportunities  Low catch rates mainly attributable to overfishing by large foreign fishing vessels  High rates of natural disasters  High cost of fishing because of higher prices of diesel and equipment and high taxes  High economic dependency on earning members of the household  Lack of education  High rates of tuberculosis  Water shortages  Lack of direct access to markets  Lack of appropriate technology  High rates of tobacco use  High rate of population growth  Political and geographic marginalisation  Lack of support services

decline in catch rates mainly attributable to overfishing by large foreign fishing vessels, lack of alternative employment during the off-season and an already high rate of both fatal and non-fatal events,2-11 tuberculosis and tobacco use (Box 7). Lack of education is a serious problem in these communities: 64% of the participants had no primary education

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and only 0.7% had secondary education. This lack of education prevents members of this community from entering into occupations other than menial labour, besides reinforcing social and political marginalisation.

Women in these communities also suffer multiple disadvantages. They have overwhelming child care and family responsibilities because men are away from home for long periods of time. A significant proportion of them, besides taking major responsibility for the housekeeping, work as housemaids in their neighbouring affluent areas, fish processors or embroidery workers which are among the lowest paid jobs in the country.

Among the ethnic groups, Bengalis are the most socioeconomically disadvantaged. Most of them are illegal immigrants who started migrating to Karachi from Bangladesh in 1971 when East Pakistan gained independence from West Pakistan after a bloody civil war. In Karachi, they mainly settled in Machar Colony (Machar means “mosquito” in the local Urdu language). Built on a landfill site and spread over an area of only 4 square kilometres, this largest slum of Karachi has an estimated population of 700,000 people (4.4% of Karachi’s 16 million population), mainly of Bengali origin engaged in fishing, fish processing, and prawn peeling which is regarded as the most hazardous and lowest paid occupation in the country. Because of its illegal status, its population live in the most squalid environment. The colony lacks even basic amenities, such as running water or sewerage services.

The present analysis has several limitations. All data on socioeconomic status are based on self-reports, which may be affected by information and sampling biases. Moreover, we did not have an adequate control population with which to compare the results of our study population. Although attempts were made to collect representative samples from the mainstream non-fishing populations in Karachi, the prevailing security situation did not allow for this. Despite these limitations, this study highlights, for the first time, the grave socioeconomic situation in which the fishing populations are engulfed. Our findings have the potential to make a major contribution to the development of targeted interventions to reduce poverty in these populations.

7.2 Burden and causes of vision impairment and blindness

Furthermore, this survey provides, for the first time, comprehensive information on vision loss, its causes and social determinants in a socioeconomically disadvantaged and

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marginalised population, which has been entirely invisible in eye health research in LMICs. The present study provides evidence that vision impairment and blindness are a significant problem in the older adult population, especially among women.

The age-standardized prevalence of MSVI in this population was 23.2 % (19.8%- 26.5%), and blindness was 2.8% (95% CI, 1.4%-4.2%). These are unexpectedly high given that the city of Karachi, in which these populations reside, has a large network of eye care services, including those providing totally free or subsidised eye care services. This finding suggests that eye care services in Karachi have not been adequately designed to address the needs of these marginalised communities. The observed estimates are within the range documented in adults aged ≥ 50 years in recent population-based cross- sectional surveys in general populations in South Asia.286 However, unfortunately, no adequate data for direct comparison are available at present. There is only one study in the literature that has estimated vision loss in a population similar to ours.141 In that study, Marmamula and colleagues (personal communication) surveyed 852 persons aged ≥ 50 years in fishing communities in the Prakasam district of Andhra Pradesh in India, and found that 4.6% (95% CI: 3.2–6.0) of them had bilateral blindness and 43.7% (95% CI:40.4–47.0)has MSVI. The high crude prevalence of vision loss estimated in the Prakasam survey might reflect, besides relatively poor access to eye care services, a significantly older age structure of their sample which is expected to have a higher prevalence.

Gender has been a major unaddressed issue in the prevention and control of blindness despite the fact that women account for nearly two-thirds of blind people worldwide.47 The issue has been a matter of debate since the landmark systematic review of 70 population based surveys carried out in 39 countries between 1980 and 2000.20 That analysis showed that overall women were 1.43 (95% CI 1.33-1.53) times more likely to be blind compared with men. Work currently being undertaken by Ramke et al (personal communication; forthcoming) to update that review reveals that this gendered inequity remains much the same at a global level. While our results are consistent with the conclusion of this review and recent large-scale population-based studies, disparities based on gender were more pronounced in our study.50,107 Women compared with men were 4.2 times more likely to have bilateral blindness and 1.5 times more likely to have MSVI. No significant disparity based on gender had been found in the survey involving

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fishing communities in Prakasam.141 The observed gender differences in our study may be explained by excess risk of cataract formation in women than men, as evidenced by the higher rate of cataract surgery in women, and that too at a relatively young age. Several studies have found that cortical opacities are more common in women than men while there is less evidence of any association between sex and nuclear and posterior subcapsular cataracts.28,31,287-291

While a higher proportion of women than men in our study had significant vision impairment due to uncorrected refractive error and can most benefit from corrective glasses, they are less likely to wear them. Many women provided free glasses for distance during the survey never wore them, saying many community members, especially children, made fun of their glasses. Women in these communities also face other challenges in accessing eye care, including financial hardships, “fears” and social support constraints. Gender issues should be taken into consideration in all aspects of blindness prevention and control programming, including planning, implementation, monitoring and evaluation—not only for this population but also other populations in LMICs, including Pakistan.

Increased age is an important risk factor for vision loss.28 As expected, the prevalence of both vision impairment and blindness increased markedly with increasing age. People aged ≥ 70 compared with those aged 50–69 years were 1.7, 1.9, 3.4 times more likely to have mild VI, MSVI and blindness, respectively. With the rapidly growing elderly population in LMICs, this problem will worsen not only in the fishing population but also in other populations. Eye care services should keep pace with the rapidly growing elderly population. Certain subgroups of older adults including women, those of lower socioeconomic status and those with mobility difficulty would require special attention with eye care. Cataract and uncorrected refractive error, which together accounted for 92.3% of mild VI, 85.4% MSVI, and 62.5% of blindness in this population, are easily treatable conditions. A small but significant proportion of vision loss was due to poor quality of cataract surgery or long-term complications of this procedure such as posterior capsular opacification. Proper scaling up of high quality cataract surgical and refractive services alone can provide good vision to most of the vision impaired or blind people in these communities. Such services should not just include surgery and refraction, but also quality

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control measures, early detection, post-treatment care and regular access to eye health- information and education which are often lacking in LMICs.

Particular strengths of this analysis include its focus on a disadvantaged multi- ethnic population about whose eye health nothing is known; a relatively large sample size considering the hard-to-reach nature of this population, and; a high participation rate and a comprehensive eye examination. Eye examination involved the use of logMAR visual acuity testing and autorefraction and best corrected visual assessment of all subjects, and a dilated posterior segment examination as per protocol. To date, only a very limited number of studies in LMICs have provided such detail. Additional strengths of this study were the use of quality-control procedures with trainings conducted by trained, experienced personnel; and the use of a higher visual acuity threshold than is traditionally used in population based surveys. This allowed the burden of refractive errors to be assessed, which, along with cataract, are the two priority areas for the global initiative to eliminate avoidable blindness by the year 2020. Another reason to choose a higher visual acuity threshold was that a significant proportion of eyes undergoing cataract surgery in Karachi are believed to have a preoperative VA of 6/18 or better. Clearly, this analysis also has several limitations. First, the lack of a reference population for comparison with Karachi does not allow us to state whether there is an excess burden of vision loss in this population. Second, direct standardisation of the rates observed to the total population of adults aged ≥ 50 years in the fishing communities in Keamari was not possible because there is no reliable information on the age-structure or the size of fishing populations in the country. Therefore, prevalence data on blindness and vision impairment were standardised to the 2000 World Standard Population, using the direct method, which allows for reliable comparison within groups, and with other studies. Third, the selection of areas predominantly inhabited by the fishing communities was not random but was based on local knowledge which could have resulted in a sampling bias. Random sampling was not possible because no sampling frame of all such areas was available. Fourth, the sample size, while adequate for assessing the overall burden of blindness and vision impairment, had limited power to detect small differences between the groups classified by ethnicity, income, and other characteristics. In many cases both husband and wife were selected which may bring the possibility of correlated data on household income and other common characteristics, which generally requires a larger sample size to provide more reliable estimates. Finally, the cross-sectional nature of 183

the study precludes causal inferences about the observed associations. The temporal association between vision loss and SES variables such as work status cannot be firmly established. In summary, the present study provides a new dimension to the growing literature on the burden of vision impairment and blindness by focusing on a hard-to-reach, marginalised population, about whose eye health nothing is known. Vision impairment and blindness are receiving attention globally but with insufficient focus on those most difficult to reach and having unequal access. Knowledge of disease burden, and its causes and determinants in such communities is a critical step to making eye health policy, programmes and service delivery more evidence-informed, inclusive and rights based. Given the markedly higher burden of vision loss among women than men, gender issues should be mainstreamed in all aspects of prevention and control, including planning, implementation, monitoring, and evaluation.

7.3 Access to eye care

7.3.1 Eye care use

To our knowledge this is the first study to examine eye care service use and its determinants in hard-to-reach marginalized fishing communities in a developing country. It was disappointing to note that a high proportion of the surveyed population (54.7%, 95% CI 50.8–58.6%) had never had an eye examination despite a high burden of vision loss, and that those who had received an eye examination within the last five years, only a very small proportion (15.7%) received their most recent one in a government hospital. These inadequacies should be acknowledged and addressed as there appears to be a common perception that the city of Karachi, in which these communities reside, has one of the highest concentrations of skilled eye care workers and health care facilities in the country, including a number which provide free or subsidized eye care services. Compared with the general population in Pakistan, extreme poverty and lack of education were far more prevalent in the study population. For example, 93.9% (95% CI 92.0–95.7%) lived in poverty, four times higher than the national average (22.6%).292 Similarly, 84.3% of people in this population had no education compared with the national average of 72.1% for the same age-group.293 A summary of the results of population-based cross-sectional surveys294-298 on eye care service use, conducted between 1995 and 2010 in a number of developed and developing countries is presented in Table 58, although 184

differences in the underlying population age structures, eye care needs, study time periods, and ranking of the health care systems make precise comparison inappropriate. For instance, 60.2% of those aged ≥ 50 years in the Aravind Comprehensive Eye Survey had never had an eye examination.295 That study was conducted during 1995–1997 in Madurai, Tirunelveli and Tuticorin districts in neighbouring India. By contrast, a survey carried out in urban Tehran in 2002 found that only 14.9% of people aged ≥ 50 years had never seen an eye doctor in the past, reflecting the wider access to eye care services in that city.294 The WHO estimated that two-thirds of all vision loss including blindness worldwide occurs in people aged ≥ 50 years and that much of it is avoidable.47 Adequate and regular access to eye care services is, therefore, of particular importance in this age group. Only 12.1% (95% CI 9.5–14.6%) of the surveyed adults had had their eyes examined in the previous year and 30.9% (95% CI 27.3–34.5%) within the last 5 years, which demonstrates poor access to eye care services despite a high burden of eye disease. Indeed, 79.5% (95% CI 76.1–82.5%) of participants had symptoms of eye disease and 38.2% (95% CI 34.5–42.1%) had significant vision loss (VA < 6/12 in the better eye).

Table 58 Selected previous studies measuring access to eye care services in general population Time since last examination, % Year of data Sample Age, < 1 < 5 Never Author collection Study setting size years year years Present 2009-2010 Karachi, Pakistan 638 ≥ 50 12.1 30.9 54.7 study Fotouhi294 2002 Tehran, Iran 797 ≥ 50 46.5 71.4 14.9 Nirmalan295 1995-1997 Rural south India 3084 ≥ 50 NA NA 60.2

Bylsma296 2004 Victoria, 4612 ≥ 40 44.0 79.8 8.9 Australia McGwin298 2010 United States NA ≥ 50 67.1 NA 1.2 Vela297 2002-2003 Low income 11,020 ≥ 60 10.0 27.0 61.0 countries NA, Not available

Aggressive efforts are needed to ensure adequate coverage. In a number of developed countries, the recommended frequency of eye examinations for people of

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comparable age (≥ 50 years) is every 2–5 years for those in the general population and every 1–2 years for those with diabetes, a family history of eye disease, and for certain marginalized groups (such as Aboriginal and Torres Straight Islanders in Australia and African Americans or Hispanics/Latinos in the USA).299,300 To date, however, no such guidelines have been developed in LMICs in which approximately 90% of the world’s visually impaired people live. While the overall uptake of eye care services among the fishing communities was low, particularly low levels of service use were identified among the ethnic Bengalis. The frequencies of eye examinations among Bengalis (only 5.4% within the prior year, 17.9% within 5 years and 24.4% ever) are the lowest reported in the literature. This reinforces the need to place improving access, enhancing equity and reducing disparities firmly on the international eye-health agenda. Indeed debates around the post-2015 development agenda increasingly highlight such concerns.301 Of the group of variables examined in the multivariable binary logistic regression analysis, ethnicity accounted for the greatest percentage of variance in receiving an eye examination, much more than age; ethnic Bengalis were 4.2 times less likely to ever receive an eye examination (adjusted odds ratio 0.24, 95% CI 0.15–0.38). Our study also shows that confounding factors associated with access to health care such as socioeconomic status do not fully to explain these lower rates. Nor does distance from eye care facilities explain these ethnic disparities. In fact, ethnic Bengalis generally live somewhat closer to many of the eye care facilities in the city than do other ethnic groups. Several questions arise from these results. Are ethnic Bengalis less willing than Kutchis and Sindhis to use eye care services largely because they are less familiar with the health care system? Do they have less trust in the health care system than their counterparts from other ethnic groups? Trust is a significant factor influencing whether and how communities use health services. Background interviews with the study participants and community leaders revealed that fear of police may deter ethnic Bengalis from seeking eye care since many of them are illegal migrants.12 Part of the problem could be lack of social support networks necessary to provide information on the location, quality and cost of the available eye care services and how these can be accessed. Ethnic Kutchis and Sindhis, when compared with ethnic Bengalis, had a relatively well-developed social support network, which directly influenced eye care service use. In areas inhabited by the Kutchis and Sindhis, community and political leaders have been actively involved in

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eye care service provision for more than 15 years. These activities include inviting ophthalmologists every few years to organize local ‘‘eye camps’’, regularly referring eye patients to hospitals in the city or sometimes accompanying them to their clinic appointments. This was not the case in areas inhabited by ethnic Bengalis. Further research is needed to determine the scope and significance of these networks, especially with regard to eye care service use. Men had a lower rate of eye care service use than women, although gender did not reach statistical significance in the final model. These gender disparities may be because of the nature of men’s work (i.e. being away from home for long periods of time) or a relatively lower burden of eye diseases among them than among women. Within each ethnic group, men were consistently less likely to have had an eye examination in the past than women, but the results did not reach statistical significance perhaps because of the small numbers of participants in each ethnic group. Eye care programs should be adapted to accommodate the needs of hard-to-reach groups. Eye care service use rates were higher among those who were unable to work, were retired or did not do any work compared with those currently employed in fishing or non-fishing sectors. This suggests that these groups have time to access care and would be receptive to ophthalmic care if the provision of additional services would be made geographically, financially and culturally accessible, especially through the public sector. People with diabetes mellitus in our study were significantly more likely to receive an eye examination than their non-diabetic counterparts. However, a third (34%) had never received an eye examination. Diabetes is associated with microvascular complications including retinopathy, which is a leading cause of vision impairment and blindness worldwide.246 The risk of blindness can be reduced by 90% with timely treatment and regular follow-up care.302 People with type 2 diabetes should have a comprehensive eye examination including dilated fundus examination shortly after the diagnosis of this condition, and then annually to detect asymptomatic retinopathy before it damages vision. Unfortunately, in our study only 12.0% of those with diabetes had undergone an eye examination in the past year and only 24.0% in the past 2 years. Those with diabetes may use or have access to medical care and it may be most efficient to integrate medical and eye care services. It would have been valuable to know if these clinical assessments involved dilated fundus examinations, but it would require additional research.

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Pakistan has been politically unstable and characterized by high levels of political violence creating difficulties in routine activities, including service delivery and field research.269,303 Particular strengths of this equity-focused analysis include its focus on marginalized and vulnerable communities about whom little is known with respect to eye health and care service use; a relatively large sample size and high participation rate considering the hard-to-reach nature of this population and the prevailing unstable political and security situation; varied information on socioeconomic status; comprehensive eye examination including logMAR VA testing (both presenting and best corrected), slit-lamp biomicroscopy and dilated posterior segment examination, and use of a higher VA threshold than is traditionally used in population-based surveys. There are several limitations to the present analysis. First, our results of eye care service use are based on self-report and could not be validated against medical records, which are not readily available in this setting nor in many other LMICs. While we could not identify any published research validating self-report of eye care service use against medical records in developing countries, previous studies in developed countries have reported significant variation concerning the degree of agreement between self-report and medical records.304,305 Second, we could not ascertain who were examined by eye doctors and who were examined by other eye care workers such as medical officers. The latter constitute a significant proportion of eye care practitioners in the country and it may not have been possible for the participants to differentiate between the two when responding to our question. Third, recall bias could have played a role if participants were unable to recall reliably their prior use of eye care services or if they over- or underestimated the time since their last visit. However, we have no reason to suspect that over- or underreporting was more prominent in certain ethnic or demographic groups. Fourth, the diagnosis of diabetes was based on self-report with only 7.8% people in the study reporting having physician-diagnosed diabetes. This is likely a gross underestimation of the true prevalence. Last, the lack of a relevant reference population for direct comparison does not allow us to state whether the observed findings on eye care service use rates are comparable to those of other populations in Karachi. In summary, this population-based study revealed evidence of suboptimal availability and uptake of eye care services by the marginalized fishing communities in Karachi. It was disappointing that eye care service use varied so greatly by ethnicity,

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highlighting the likely influence of social factors. While the city of Karachi may have the highest concentration of skilled eye care professionals in the country, eye care services, especially those provided by the public sector, are not adequately reaching these communities. The total number of these workers may be insufficient to address the demands of the city and/or this population may prefer to receive care from persons with shared ethnic and cultural identity. These communities would be more receptive to eye care if the provision of additional services were to be delivered by trained workers with a sensitivity to ethnic and cultural identity. Presumably those with diabetes may use or have access to medical care and it may be most efficient to integrate medical and eye care services. Like other human rights, the right to health is particularly concerned with the health and wellbeing of the disadvantaged and the vulnerable. More direct and focused attention to these populations in eye health policy, service delivery and eye health research is necessary. Such communities deserve particular attention in the Vision 2020 and other plans; this is long overdue.

7.3.2 Barriers to eye care

Earlier I presented the results of content analysis of self-perceived barriers to eye care seeking identified by a hard-to-reach and marginalised population, which often is neglected in policy and health research. The barriers most frequently cited were perceived lack of need (50.4%), financial hardships (36.4%), ‘‘fears’’ (8.6%), and social support constraints (6.3%). Women were more likely to report financial hardships, ‘‘fears,’’ and social support constraints, while men were more likely than women to report no need to seek eye care. The WHO estimates that two-thirds of all vision loss, including blindness, worldwide occurs in people 50 years of age or older and that much of it is avoidable.47 Therefore, adequate and regular access to eye care is of particular importance in this age group. In our study, perceived lack of need was the main barrier to seeking an eye examination. Indeed, one of every five people who cited lack of need or low need had significant vision loss (PVA <6/12 in the better eye), while more than half of them had at least one eye disease symptom, indicating substantial discordance between population- perceived needs and medically defined needs. The perceived lack of need we identified can be attributed to misperceptions that vision loss is a normal part of aging and, in most cases, untreatable. It also may be related

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to the interplay between individual, sociodemographic, and sociocultural factors, along with the responsiveness of health systems to population concerns and the level of health literacy within the community. Over the past two decades, population-based surveys across several LMICs, including in Pakistan, 56,58,63,65,66,306-308 have consistently shown a lack of felt need to be a predominant barrier to seeking cataract surgery among people with cataract. This is all the more concerning given that cataract is the world’s leading cause of vision loss, including blindness. More recent studies demonstrate little improvement in these data. Financial hardships were major barriers to eye care in this population, especially for ethnic Bengalis, women, and those living in poor households. On some levels, this is not surprising given the lack of healthcare insurance and the high out-of-pocket health care expenses relative to income of the population. Of people in this population, 93.9 % (95% CI, 92.0–95.7) lived in extreme poverty (

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absence of, care seeking and reliance on alternative treatments. More detailed examination of the context in which such distrust occurs and what can be done about it is warranted.309 In contrast with previous reports,63 neither service availability nor their geographic access was a significant concern for this population. Both of these factors have been shown to be important barriers to the uptake of cataract surgery in LMICs. The study population is positioned in close proximity to a significant number of health facilities, including those providing eye care services. Approximately 12% of the participants cited more than one reason for nonuse of services and we did not ascertain which was the primary cause at the time of data collection. Moreover, the self-reported nature of our survey may have led to an overestimate or underestimate of the true magnitude of some of the barriers. In summary, this study identified barriers to access to eye care encountered by a marginalised and hard-to-reach population with large unmet needs, and about whose eye health very little is known. For the vast majority of people in this population, access to eye care services was hindered by perceived lack of need, financial hardships, ‘‘fears,’’ and distrust of health care systems. These were compounded by significant variations by gender, ethnicity, and socioeconomic status. Our findings are drawn from people aged ≥50 years, an age group that accounts for approximately two-thirds of all vision loss, including blindness, worldwide. The knowledge deficits identified by this study underscore the need for effective health education, information programs, and health literacy more generally. These should stress the importance of regular eye examinations, especially in the presence of deteriorating vision, for older adults while addressing misconceptions, such as that vision loss is a normal part of aging and, in most cases, untreatable. Such barriers should be addressed with particular attention to financial needs of women, ethnic Bengalis, and those with low socioeconomic status. Additional surveys in fishing populations and other marginalised populations in LMICs are needed to better assess and more rapidly address the under recognized needs of these marginalised populations.

7.3.3 User experiences and acceptability of eye care services

We examined user experiences and acceptability of eye care services in a marginalized population in Pakistan. Overall, 6% respondents reported having had bad experiences

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during their most recent eye care visit. On average, 43.1% participants said they would not want to go to that same service again or recommend it to others. Reported unacceptability of eye care services was substantially higher among women than men.

Human rights-based approaches to health and health systems measure acceptability by the extent to which health facilities, goods and services respect the culture of communities and individuals (in particular, the marginalized and disadvantaged) and confidentiality, are sensitive to gender, and are scientifically and medically appropriate.161 In our study, an unexpectedly high proportion of participants, especially women, reported having no intention to visit the health care facility again or recommend it to their relatives or friends. This is worrisome considering the need for regular eye care for people aged ≥ 50 years; two-thirds of all vision loss, including blindness, worldwide occurs in this age group with women and socioeconomically disadvantaged groups being disproportionately affected.310

Effectiveness of eye care (self-reported) was one of the most important reasons for acceptability (or otherwise) of eye care services for these communities. Ironically, one out of every 13 persons who said they would not visit again or recommend to others cited their poor visual outcome of cataract surgery as the basis for their views. Cataract surgery related visits constituted a third of all visits to eye care providers in this population. Quality of cataract surgery, which is a critical but under-recognized issue in LMICs,70,174 needs major improvement if acceptability of eye care is to improve. In this population, women tended to receive much poorer quality of cataract surgery than men,201 and this could be a reason why unacceptability of eye care services was substantially higher among women.

The “high” cost of eye care was a major hindrance to its acceptability in our study. Indeed, one of four clients reported having substantial difficulty in making payments. Cost was also a major barrier to why a substantial proportion of people (54.7%) in this population had never had an eye examination. This is understandable as 93.9% (95% CI, 92.0–95.7) people in this population live below the poverty line (on

population preferred to visit private eye-hospitals. This is disturbing given that 93.9% (95% CI, 91.7–95.6) participants lived in extreme poverty (

Communicating effectively with patients and their families is the core of providing patient-centred and human-rights based care. It was concerning that some of the respondents were promised free eyeglasses or a follow up visit by doctors, but received neither. Such incidents should be avoided as they can create distrust among communities. Difficulties in following up people if they do not have clear addresses, telephones, or be in regular contact with services were also likely to be present and require future attention. Patients should be provided information about all proposed treatments in a manner they understand and they should be involved in their eye-care at all stages, allowing them to make informed decisions regarding their care. For instance, patients receiving dilating drops or new medications should be told about possible side effects. We could not ascertain if eye care users we interviewed had the information they needed when they left the eye care facility.

This study highlights the role of social support factors in relation to the acceptability of eye care services. Patients’ home and family circumstances and their language of communication should always be taken into account as part of eye care planning and service delivery as should be any functional limitations, such as inability to walk, see or hear. All such groups need special attention.

Some of the issues raised in the study, such as fears of violence in the city, may be specific to Pakistan’s current security and socio-political context. The unstable situation in Pakistan in general and Karachi in particular may be playing a significant role in hindering access to, and acceptability of, eye health care and other services. Other reasons for unacceptability of care, such as the last minute postponement of cataract surgery as a result of power outages, are more general problems in LMICs that need to be documented and addressed by providing alternative sources of energy.

A striking finding was that only 15.6 % of those who had used eye care services in the last five years had done so in a government health care facility.311 The government needs to improve its eye-care services so that their uptake by poor communities is increased. The use of an open-ended question, as well data of socioeconomic status, enabled insights

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into the wider socioeconomic and development context, which should be taken into consideration when designing eye care services for this as well as other marginalised communities if equity and the right to health care is to be taken forward.

The strengths of this analysis include exploring a previously under-recognized area of eye care in LMICs, the use of an open-ended question to identify the main reasons for acceptability or rejection of eye care and a thematic content analysis of the responses it generated, which enabled several new themes to emerge.

Our results are subject to recall bias because participants were asked to provide details of interactions, some of which were not recent. It is possible that participants were more likely to recall only severally negative experiences than mild ones. Data on health care experiences and acceptability of eye care services are based on self-reports, which may be subject to over- or under-reporting.

This study highlights the crucial role that perceived poor quality and financial inaccessibility play in negatively influencing acceptability of eye care services in a marginalised population. These factors, if unaddressed, may further marginalise a population already at high risk for vision loss because of their hard-to-reach nature and extreme poverty. Research insights and other data reflecting community perspectives can help drive evidence-informed policy and practice.264 Identifying populations or patient groups with the greatest potential for improvement in service access and use, targeting specific domains in need of quality improvement, and comparing the performances of different providers and changes over time can foster more transparent, accountable, and equitable patient-centred and human-rights based service delivery in LMICs.

Acceptability in human rights-based approaches to health and health systems measures the extent to which health facilities, goods and services respect the culture of communities and individuals (in particular, the marginalised and disadvantaged) and confidentiality, are sensitive to gender, and scientifically and medically appropriate.161 In our study, an unexpectedly high proportion of participants, especially women, reported having no intention to visit the health care facility again or recommend it to their relatives or friends, if need be. This is worrisome considering the need for regular eye care for people aged ≥ 50 years, especially women and those from marginalised groups; two-thirds

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of all vision loss, including blindness, worldwide occurs in this age group with women and socioeconomically disadvantaged groups being disproportionately affected.310

Effectiveness of eye care (self-reported) was one of the most important reasons for acceptability (or otherwise) of eye care services for these communities. Ironically, one out of every 13 persons who said they would not visit again or recommend to others cited their poor outcome of cataract surgery as a ground. Cataract surgery related visits constituted a third of all visits to eye care providers in this population. Quality of cataract surgery, a critical but under-recognised issue in LMICs,70,174 needs major improvement if acceptability of eye care is to improve. In this population, women tended to receive much poorer quality of cataract surgery than men and could be a reason why unacceptability of eye care services was substantially higher among women.

The “high” cost of eye care was a major hindrance to its acceptability in our study. Indeed, one of four persons who visited the eye care had a lot of difficulty in making payments. Cost was also a major barrier to why a substantial proportion of people (54.7%) in this population had never had an eye examination. This is understandable as 93.9 %( 95% CI, 92.0–95.7) people in this population live below poverty line (on

The use of an open-ended question, as well data of socioeconomic status, enabled insights into the wider socioeconomic and development context, which should be taken into consideration when designing eye care services for this as well as other marginalised communities.

Some of the issues raised in the study—fears of violence in the city—may be specific to Pakistan’s current security and socio-political context. The unstable situation in Pakistan 195

in general and Karachi in particular may be playing a significant role in hindering access to, and acceptability of, eye health care services. Other reasons for unacceptability of care, such as the last minute postponement of cataract surgery as a result of power outages, are more general problems in LMICs that need to be addressed by providing alternative sources of energy.

Our results are subject to recall bias because participants were asked to provide details of interactions- some of which were not recent. It is possible that participants were more likely to recall only severally negative experiences than mild ones.

This study highlights the crucial role that perceived poor quality and financial inaccessibility play in negatively influencing acceptability of eye care services in a marginalised population. These factors, if unaddressed, may further marginalise a population already at high risk for vision loss because of their hard-to-reach nature and extreme poverty. Measuring patient experiences of eye care in LMICs is highly warranted as it can help to identify populations/patient groups with the greatest potential for improvement in the experience, help to target specific domains in need of quality improvement, and compare performance of different providers and changes over time, thus fostering patient-centered and human-rights based service delivery in these settings.

7.4 Cataract surgical coverage and barriers to cataract surgery

The estimated coverage for cataract surgery in this marginalised population, especially among ethnic Bengalis, was low. Most people with cataract in one or both eyes were unaware that they had the condition, did not feel the need for cataract surgery, were too poor to afford treatment, or had fears of surgery.

CSC in these communities was much lower than expected considering their close proximity to a large number of eye care facilities in Karachi, including those providing free cataract surgery through local and international support. Nearly two-thirds of all those with cataract in one or both eyes, especially ethnic Bengalis, were unaware that they had

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the condition (78.3% or 90/115 of them had never seen an eye doctor) while a third did not feel the need for surgery. These barriers, together with a disproportionately high prevalence of “fears” of cataract surgery or its poor outcome among women, indicate the critical need for regular access to health-related education and information and for regular screening to ensure early detection and timely treatment of cataract and other age-related sight-threatening eye diseases. Cataract services would have to be more holistic and inclusive than just establishing surgical facilities, enabling individuals and communities, especially marginalised ones, to make informed decisions about their eye health, for instance, about when, where and how to access affordable and high quality cataract surgery. At the same time, ensuring active and meaningful community participation and improving the quality of cataract surgery and effectiveness of communication between health care providers and local populations, especially women, would be critical to dispelling different fears and to addressing the widespread perception of lack of need among these communities, thus boosting cataract surgical coverage.

While the role of ethnicity in determining vision loss and cataract surgical coverage has not been studied in previous surveys in LMICs, ethnicity was the only factor that was significantly related to the uptake of cataract surgery in our study. Ethnic Bengalis had a strikingly lower coverage than Kutchis and Sindhis. Several factors may explain this disparity. First, many ethnic Bengalis, have undocumented status, and fear of criminal prosecution and torture by law enforcement personnel may deter them from accessing health care including cataract surgery. Second, in areas inhabited by ethnic Bengalis, there was insufficient local social support networks to facilitate access to cataract surgery in contrast to those inhabited by Kutchis and Sindhis, where community leaders have maintained a strong tradition of organising “eye camps” in collaboration with several eye care providers every few years, and regularly referring or accompanying eye patients to hospitals. Fish gifted or served to eye doctors and other eye care workers by the community leaders play a key role is fostering these linkages. Finally, for ethnic Bengalis, “financial hardships” together with the language barrier, may also be significantly worsening their likelihood of accessing cataract surgery.

In sharp contrast to most previous reports, we found higher overall coverage among women than men (at three of four visual acuity cut offs), but these differences were small and statistically not significant. A 2009 meta-analysis of cross-sectional surveys conducted

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across LMICs showed that women were far less likely to receive cataract surgery when needed compared with men (Peto odds ratio 0.60, 95% CI, 0.51-0.68).30 Of 23 included studies, only three showed a higher CSC among women while all other showed higher CSC among men. The selected visual acuity threshold was <6/60.

Cataract surgical coverage for people as well as for eyes, at all four visual acuity cut- offs, was consistently lower among individuals describing their household financial status as “poor/fragile” compared with “fine”. However, these differences did not reach statistical significance. CSC did not vary much by income levels. The lack of association between socioeconomic status and CSC in our study could be due to the relatively homogeneous, low socioeconomic status of our study population, the relatively small sample size of the data set that limited our statistical power to detect between group differences. An encouraging finding was the relatively small gap between the observed coverage for persons and coverage for eyes, indicating substantial demand for second eye cataract surgery in this population which could reflect, in part, the relatively better access to affordable and quality cataract surgery.278,312

Consistent with previous reports,49,56,63,66,69,313-318 financial constraints were a major obstacle (self-reported) to the widespread uptake of cataract surgical services in these communities which pay for their health services through out-of-pocket expenditure, with no health insurance, as elsewhere in Pakistan and much of LMICs. Despite its high cost, this population used more private eye care than expected. Ensuring the availability of affordable and reliable transport services and addressing out-of-pocket costs needed for multiple clinic visits, medicines, and surgery will substantially increase the uptake of cataract surgery while protecting poorer households against catastrophic health spending.319 Our analysis shows that services are available (none of the respondents cited lack of availability of the service as a reason for not having cataract surgery, and only 4 persons (2.2%) mentioned geographic barriers) but the challenge is making them more accessible to people, both information- and affordability-wise, especially to marginalised groups.

Distrust in health care systems, stemming from previous negative experiences with health care providers, such as poor outcome of cataract surgery or last minute cancellation of surgery due to power outages, prevented a significant proportion of people (8.3%) with cataract from seeking cataract surgery. Suboptimal of cataract surgery has 198

been a significant concern in Pakistan including this setting and must be addressed if existing eye care programmes are to have widespread acceptability and uptake.58,64-66,307 Similarly, last-minute cancellation of cataract surgery, especially those due to scheduled and unscheduled electric power outages, should be avoided as these could be distressing for patients, their caregivers and health professionals. We believe that this issue has become more widespread and severe than it was at the time of our fieldwork, and needs further investigation. Different formulae are in use to calculate CSC. Most studies have used a formula that tends to overestimate the true coverage, as it does not take into account individuals with operable cataract in one eye and no cataract surgery in the other. The one we described takes this into account, thus providing more accurate estimates of the proportion of people needing surgery in one or both eyes who actually received it. This should be routinely used alongside those for CSC Person and Eyes to enable comparison across studies. The strengths of this study include its detailed and “inclusive” analysis of CSC and barriers to uptake –with particular attention to disparities by gender, ethnicity, and socioeconomic status. The use of a higher threshold of visual acuity in this survey than is traditionally used in population-based eye surveys allowed CSC for visual acuity threshold <6/12 and barriers to cataract surgery among those with visually significant cataract in one or both eyes to be examined. These assessments are timely and relevant given a significant proportion of eyes undergoing cataract surgeries in Karachi and in many other urban centers in LMICs have a preoperative VA of <6/12-6/18.312 This analysis has several limitations. First caution should be taken while interpreting the observed coverage at both VA cut offs < 3/60 and < 6/60 as they may overestimate the true coverage when patients with a preoperative VA equal to or better than these cut offs have also been operated upon. The lack of significant difference between the observed CSC (person, person inclusive, eyes) at visual acuity cut-offs <6/12 (49.4%, 37.6% and 35.0 %) and <6/18 (53.5%, 39.4% and 37.9%) also indicates that cataract surgery is being undertaken at an early stage of vision loss. The self-reported nature of our data may be subject to social desirability biases with certain barriers being under- or over-reported. In summary, cataract surgical coverage in this marginalised population is suboptimal given the presence of a large network of eye care facilities located in close

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proximity to it. Uptake of cataract surgery is limited by insufficient attention to health- related education and information, early detection and quality of care. Ethnic Bengalis had some of the lowest coverage for cataract surgery, which means that many of them delay or forego the needed surgery, which is one of the most widely available, cost-effective and successful public health interventions worldwide. Future studies should consider the impact of ethnicity on the uptake of cataract surgical services in LMICs to facilitate targeted interventions to contribute to addressing inequalities. Gaps in coverage must be eliminated to make global elimination of avoidable blindness possible.

7.5 Outcomes of cataract surgery

The right to health, enshrined in international law and many national constitutions and legislations, requires that health care interventions are of good quality.156 Unfortunately, the quality of surgery in this marginalised population was of concern as two-thirds of 145 eyes that had undergone cataract surgery had some form of vision loss. 12.4% eyes were blind after operation. Women experienced substantially worse visual outcomes. The WHO recommends that poor visual outcomes should be experienced in no more than 5% of eyes undergoing cataract surgery. The visual outcomes in our study are worse than the WHO recommended values (Table 59) but relatively better than those found in a number of other studies in LMICs.63 Our study setting, Karachi, is an urban area with reasonably good facilities and with a number of active charity-based eye care organisations. Reasonably good access to skilled eye care professionals and IOL surgeries appears to be present; all surgeries in this population had been performed in static eye care facilities and 92% of these were with IOL. A suboptimal rate of IOL implantation and “eye camp” surgery have been found to be major contributors to poor visual outcomes in many resource-poor settings, including Pakistan.64

The most striking finding in the present investigation was the poorer visual outcomes of cataract surgery among women than men. Women’s eyes compared with men’s eyes were 4.38 times more likely to have borderline or poor visual outcome (PVA<6/18). While a more meaningful comparison of our findings with existing literature is restricted by the limited number of studies that report gender-disaggregated visual outcome data, gender disparities of this magnitude have not been reported previously. Consistent with the findings of the Pakistan National Blindness and Visual Impairment

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Survey, 64 women who manage to access cataract surgery do not benefit visually from it as much as they might. Our study found no statistically significant differences in the type of eye care facilities (private, charitable or government) in which men and women had undergone cataract surgery. However, their outcomes were worse, even if they did not voice their dissatisfaction as frequently as men. The question is whether women are getting the same quality of eye care as men. Are women receiving surgery from a subgroup of eye surgeons whose surgical skills and resources are inferior to those who treat men? Our data, by showing the presence of a relatively higher percentage of operated eyes with irregular pupil or astigmatism among women, may support this hypothesis, which needs to be investigated in future research in diverse health care settings in the country. The excess rate of poor visual outcome among women may partly explain why “fears” of operation or its poor outcomes, reported earlier, were far more prevalent among women than men.19

Table 59 Outcome of cataract surgery in the present study, and its comparison with WHO recommended standards Presenting vision Best-corrected vision Present survey Present survey Men Women All Men Women All eyes eyes eyes WHO eyes eyes eyes WHO n=58 n=87 n=145 Standard n=58 n=87 n=145 Standard Outcome % % % % % % % % Good 74.1 42.5 55.2 > 80 81.0 59.8 68.3 > 90 6/6–6/18 Borderline 17.2 36.8 29.0 < 15 12.1 23.0 18.6 < 5 <6/18–6/60 Poor 8.6 20.7 15.9 < 5 6.9 17.2 13.1 < 5 <6/60

Globally, socioeconomic disparities in health status and quality of care are one of the most disturbing and challenging characteristics of health systems. In our study, there was a lack of a statistically significant association between socioeconomic status variables and visual outcome of cataract surgery. This could be due to the relatively homogeneous, low socioeconomic status of our study population, or the relatively small sample size that limited our statistical power to detect between-group differences. More than two-thirds of the causes of suboptimal visual outcome identified in our study, such as refractive errors, PCO, severe infection and several other surgical 201

complications are avoidable (preventable or treatable). Of particular concern is the high rate of endophthalmitis following cataract surgery (3.4%), which is generally reported to be less than 0.3%. Accurate IOL power calculation, effective infection control, and treatment of PCO should be a top priority of cataract surgical programmes in LMICs as should be upgrading the cataract surgery skills of many ophthalmologists and cataract surgeons. 64,194 The reported rate of cataract surgery has increased in many LMICs, including Pakistan. Given the intense pressure to dramatically reduce the large surgical backlog and to extend cataract surgery to more people, care must be taken regarding the quality of these services and to ensure prospective monitoring to identify problems to be rectified. In this population, one out of every four cataract surgeries was associated with dissatisfaction. Visual outcome was the only significant and independent predictor of satisfaction with surgery. Those with PVA < 6/18 were 10 times more likely to be dissatisfied with their surgery than those with PVA ≥ 6/18. Satisfaction should be the most important quality indicator in cataract surgical care and a critical driver for the widespread uptake of cataract surgery in LMICs. This is one of the first population-based studies in an LMIC to employ a wide spectrum of indicators to assess quality of cataract surgery than mere visual outcome. Other strengths of this analysis include a relatively large, population-based sample of cataract surgeries given the hard-to-reach nature of this population, the detailed eye examination of participants (which involved the use of presenting and best corrected logMAR visual acuity testing, slit lamp biomicroscopy, and dilated posterior segment examination), the use of a higher visual acuity threshold than is traditionally used in population-based surveys, and attention to important potential confounders in the statistical analysis. While our study does bring out an important finding of women having significantly poorer outcomes than men, the cross-sectional nature of our study and inadequate cause- specific data make it difficult to establish causality. It could not be determined whether some of the causes of suboptimal visual outcome preceded the surgery or vice-versa. Monitoring programmes or adequately sized prospective studies that take into account baseline differences in risk factors are needed to inform decision-making and practice. Another limitation of the study was differences in outcomes by ethnicity could not be meaningfully assessed because of a lower-than-expected rate of cataract surgery among

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ethnic Sindhis and Bengalis. One other report311 from this study demonstrates a substantially lower uptake of eye care services by ethnic Bengalis compared with other ethnic groups. The literacy rate in this population was very low and the predictive utility of education also could not be examined. Larger sample sizes are required if inter-ethnic or other comparisons of quality, preferably also stratified by gender, are to be undertaken. Indeed, there is considerable need to undertake such studies given the direction of apparent disparities across the diverse population studied. In summary, the quality of cataract surgery in this population, especially among women, falls short of the WHO recommended guidelines. The issue of poor quality of cataract surgery in LMICs has been highlighted by a number of previous studies and our work reinforces it. Quality of cataract surgery must receive at least as much attention as the quantity of surgery. This study recommends that, in LMICs, efforts and initiatives aimed to eliminate blindness and significant vision impairment due to cataract (the leading cause of vision loss) must focus, first and foremost, on improving the quality of existing cataract surgical services, especially among marginalised groups. Gender disparities, in particular, deserve proactive attention at policy and service response levels and in research and evaluation. With efforts to promote Universal Health Coverage, receiving global attention in 2015 as the sustainable development goals are finalized, it is an opportune time to remind all of the need to reduce disparities and ensure equitable coverage of good quality services for all.

7.6 Summary points of Chapter 7

. The present study provides a new dimension to the growing literature on the burden of blindness and vision impairment by focusing on a hard-to-reach marginalised population, about whose eye health very little is known. The pattern of blindness and vision impairment seen in this population is typical of those reported elsewhere in a number of South East Asian countries, with cataract accounting for more than half of the vision loss. Women in this population have a substantially higher prevalence of vision loss than men, indicating that this subgroup needs special and explicit attention in all stages of the programmes aimed to control or prevent blindness and vision impairment. . Although the observed cataract surgical coverage was relatively high, its distribution was highly uneven. Ethnic Bengalis had some of the lowest coverage

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for cataract surgery in South East Asia, which means that many of them delay or forego the needed surgery. This is surprising considering cataract surgery is one of the most widely available, cost-effective, and successful public health interventions worldwide. Future studies should consider the impact of ethnicity on the uptake of cataract surgical services in LMICs to facilitate targeted interventions to contribute to addressing inequalities. Gaps in coverage must be eliminated to make global elimination of avoidable blindness by 2020 possible. . The quality of cataract surgery, while better than that observed in other LMICs, including Pakistan, still falls short of the WHO recommended guidelines, especially among women. Although substantial progress has been made in increasing the quantity of surgery in LMICs, unfortunately, progress in addressing the quality dimension of eye care has been disappointingly poor. Good outcomes can be obtained in the settings of LMICs if the quality of cataract surgery receives at least as much attention as the quantity of surgery.

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Chapter 8 EYE HEALTH IN FISHING COMMUNITIES IN PAKISTAN: THE RIGHT TO HEALTH (CONCLUSIONS AND RECOMMENDATIONS)

The Karachi Marine Fishing Communities Eye and General Health Survey (Box 8) provides comprehensive information on the eye health status of an ethnically diverse disadvantaged and marginalised population in Karachi. This chapter examines the findings of the present study through a rights-based lens and presents overarching conclusions and a number of recommendations.

8.1 The right to health: a particular preoccupation with the most vulnerable groups and disparities

Like other human rights, the right to health has a particular preoccupation with the vulnerable, marginalised and disadvantaged groups, including those living in poverty.164,165 This study has focused on one such group: the fishing population in Karachi, a hard-to-reach group about whose health very little is known. The present right-to-health analysis suggests that, in many aspects of eye health, women, ethnic Bengalis and those with poor socioeconomic status are more disadvantaged than their respective counterparts. The government and non-governmental organisations must work jointly to address these disparities and their underlying causes, making elimination of inequalities a key priority for initiatives aimed at reducing the burden of vision impairment and blindness. Variation in eye health status across different population groups, as found in this study as well as previous ones in Pakistan and other LMICs,49-51,56,58,64-66,107,260-262 implies

Box 8 The main research questions 1. What is the burden of vision impairment and blindness among adults aged ≥ 50 years in the marine fishing communities in Karachi, Pakistan? Who, within these communities, is most affected? 2. What is the status of access to eye care services and what determines access? What are the self-perceived barriers to the uptake of eye care services, including cataract surgery? 3. What is the acceptability of available eye care services from the users' perspective? 4. What are the quality and outcomes of cataract surgery in these communities?

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that the current practice of largely treating the entire population of a country, province or even a district as one homogeneous group in the planning, implementation and evaluation of health policies and programmes is invariably misleading. It is the responsibility of the government to commission, undertake and use high-quality research that identifies and addresses the health needs of the entire population, especially those most vulnerable. Periodic monitoring is necessary to identify particular groups that may be experiencing a high burden of vision impairment and blindness; to determine who has access to health care and who is left out and to determine who receives quality care if access is achieved and who does not. Furthermore, it is important to provide and facilitate targeted interventions; and to hold duty-bearers (state and non-state actors, donors, international organisations and the private sector) accountable for their failures to respect, protect, and fulfil the right to health. Monitoring disparities in eye care would require the collection of data on the pathway from need assessment, to care (received or not) to outcome (good or not) to impact on individuals and community using multiple strategies for data collection and analysis. Emergent disparities and their underlying causes should be detected at an early stage and addressed in a timely manner. Lastly, the effectiveness of eye care programmes or initiatives should be measured not only by the number of patients seen or surgeries performed, but also by progress towards the elimination of eye health disparities.

8.2 Lack of effective health care system to deal with vision loss in this population

The right to health is central to the development of equitable health systems. Developing an integrated health system responsive to local priorities, and, accessible to all, is both a human rights imperative and a public health goal.162,164 The present study found that there was no system in place to effectively address vision impairment and blindness in the fishing population, as is elsewhere in the country. Eye care for this population is provided by a mixed public-private health care system, in which the private sector, both for-profit and not-for-profit, plays the greater role. However, there is a lack of coordination among providers and within their individual units, leaving a large portion of the population, especially disadvantaged groups, uncovered. Indeed, 54.7% of the surveyed people had never had an eye examination by an eye doctor despite having a high burden of significant eye problems. This is somewhat surprising, considering the presence of many health care

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facilities in Karachi, including those providing free or subsidised eye care services. It is apparent that availability of health-care facilities does not necessarily translate into access to care. The hospital designated by the government to provide secondary eye care including cataract surgical services for this population is located in Orangi Town, Karachi. It was surprising to note that among those who reported ever having had an eye examination, no one had had their eye examination in this health-care facility, showing a complete disconnect between the stated strategy and its actual implementation. Equally surprising was that none of the community leaders interviewed as part of this survey (but not presented within this thesis given space constraints) were aware that there was a designated facility for this population. This reflects a lack of participation by community leaders in health care planning and decision-making. Realisation of the right to health critically depends on the adequate supply of skilled human resources.162 However, there were no trained eye care workers to detect common eye diseases at an early stage at community level. Furthermor, there are no routine screening programmes nor referral systems to facilitate this. As a result, any individual can directly approach a secondary or tertiary care facility, whether public or private, without being referred by a lower level of care. Similarly, they can also access private eye specialists even as the first point of contact with the health care system. However, for many in this population, cost remains an issue (since they need to pay out- of-pocket for services), as do lack of information, “fears”, poor perceived quality of care and mistrust of health care systems. Government and non-state actors should develop a more rigorous and systematic approach to the problem of vision impairment and blindness in populations at particular risk, and ensure early detection and effective treatment (whether medical, surgical, laser or refraction), quality of care, risk-factor modification, education and counselling. While this cannot be done overnight, it is government’s obligation to maximise use of available resources, individually or through international cooperation, to achieve these objectives.

8.3 The double burden of vision loss among women

The four-fold higher burden of blindness in women than men in the study population reflects the fact that women typically bear an excess burden of blindness.20 Previous research has shown that women have a high disease burden because they are less likely to

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have surgery for operable cataract than men.30,320 However, this was not the case in our sample and no statistically significant differences between men and women in cataract surgical coverage were noted. The most frequently cited barriers to the uptake of cataract surgery were almost the same in both men and women. The only significant difference was in the distribution of “fears” (P<0.001) which women were substantially more likely to cite than men. Special efforts should be taken to address such “fears” which reflected concerns with personal safety, insensitive attitudes and communication by providers, and concerns regarding poor quality of services and outcomes. Our study reveals an additional disadvantage that women experience: when they have cataract surgery, they are less likely to have a good visual outcome. This concurs with the findings of the Pakistan National Blindness and Visual Impairment Survey.64 One very plausible explanation is that women receive surgery from a sub-group of eye surgeons whose surgical skills and resources are inferior to those who treat men. Our data, demonstrating the presence of a relatively higher percentage of operated eyes with irregular pupil or astigmatism among women supports this hypothesis. This hypothesis needs to be investigated further in diverse health care settings. The excess rate of poor visual outcome among women may partly explain why “fears” of operation or its poor outcome were more prevalent among women with unoperated cataract than men. Eye health policies and programmes in Pakistan must address the reality of the triple burden of cataract blindness, lower cataract surgical coverage (though not a finding of our study) and poor cataract surgical outcome among women, if they want to eliminate avoidable blindness in the country by the year 2020.

8.4 Ethnicity: a key determinant of inequalities in access to eye care

Next to gender, ethnicity was an important determinant of eye health inequalities in our analysis, as shown by a higher prevalence of eye disease and substantially lower eye care utilisation (including cataract surgical services) among ethnic Bengalis compared with other ethnic groups. This is despite the fact that ethnic Bengalis are geographically better placed to benefit from the available services than other ethnic groups in the sample. Potential explanations for this finding include differences in socioeconomic status, citizenship status and the presence of local support initiatives across ethnic groups. Ethnic Bengalis were the most disadvantaged group with respect to socioeconomic status. Many

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of them are reportedly undocumented immigrants and fear of criminal prosecution and torture by police may be deterring them from seeking care, as may be the stigma of ‘being responsible’, as an ethnic group, for the breakaway of East Pakistan in 1971. Furthermore, ethnic Bengalis lacked advantages that Kutchis and Sindhis enjoyed, such as the active involvement of community leaders in organising eye camps or referring patients for cataract surgery. Understanding ethnic differences in the pathway from eye health status to coverage to health outcome is important for the elimination of eye health disparities in ethnically diverse populations. And yet, unfortunately, the role of ethnicity in eye health in LMICs is barely studied. While a large number of surveys have been conducted during the last decade and a half across LMICs to identify the prevalence and causes of vision impairment and blindness in adults 40 years of age or older, and most recently, 50 years of age or older, these have contributed little ‘texture’ regarding who is most affected, how and why, and how well the service response has developed to address their needs. While these studies have made major contributions to our understanding of eye health at national or subnational level, most have not investigated the influence of ethnicity on disease burden, coverage or outcomes.1 The present study, among the first to investigate this important aspect of eye health in a multi-ethnic marginalised population, cautions against the assumed homogeneity of adult populations and calls for substantial attention to be given to this diversity in all aspects of programming.

8.5 Disadvantages in eye health and the poor socioeconomic status

Our study demonstrated the importance of socioeconomic status as the third key determinant of eye health. In several aspects of eye health, individuals with poor socioeconomic status—whether measured by self-reported financial status of the household, current work status or daily per capita income of household—were more disadvantaged than their counterparts with relatively better socioeconomic status. Socioeconomic disadvantages were highly prevalent in the selected population and far worse than the national average. 94% were living below poverty level, 80.7% lived in households with “poor/fragile” financial status; 64% had no primary education and only 0.7% had secondary education. The right to health, just like other human rights, has a particular concern for the poor. Eye health planners must take these disadvantages into

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consideration when developing educational and awareness-raising programmes and cost models.

8.6 Availability of eye care facilities does not always guarantee access to eye care services

Our study shows that despite the availability of eye care facilities across Karachi, half of the people surveyed had never sought eye care. This reflected poverty, lack of information, “fears”, distrust in health systems, and inadequate counselling and support services. Availability of eye care facilities alone therefore does not guarantee that everyone will use and benefit from them, as observed in our study. Part of the problem may be that existing eye care programmes are too narrowly focused on establishing new eye care facilities or refurbishing existing ones, as well as developing and training human resources, leaving other core aspects of health care delivery unaddressed or only partially addressed. Existing need-based eye care programs should expand their scope of responsibilities to encompass accessibility, acceptability, quality, participation, non-discrimination, participation and the promotion of equity.

8.7 Poor access to health-related education and information: a major obstacle

The right to health not only encompasses medical care but also the underlying determinants of health, such as access to health-related education and information.321 Consistent with similar studies undertaken elsewhere in LMICs including Pakistan, our study underscores a great need for eye health-related information in this population. Approximately half of the people who have cataract, refractive errors and other sight- threatening condition are not aware that they have these conditions.70 Further, many people who need eye treatment do not perceive a need for treatment and neither seek nor receive it. The perception of need is critical in determining whether or not individuals will seek care. Closely related to the perception of need is the issue of a disproportionately high prevalence of “fears” among women. Such “fears” can be dispelled not only by improving the quality of existing eye care but also improving the quality and effectiveness of communication between health care providers and local populations, especially women. The right to health-related education and information is a fundamental right without

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which many other human rights are difficult to attain. It has a great potential to empower individuals, communities and populations to make informed decisions about eye care and must be guaranteed by the government in practice and in law. Everyone has the right to be informed and educated about when, where and how to use affordable, accessible and high quality eye care, including cataract surgery as well as how to prevent eye disease and promote eye health.

8.8 Quality of cataract surgery is suboptimal

The right to health requires that health care interventions are scientifically and medically appropriate and of good quality.193 The quality of surgery received by this population, although relatively better than that found in many cross-sectional surveys in LMICs, including Pakistan, still falls short of the minimum standards set by the WHO.62,65,174,195-199 While substantial progress towards increasing the number of cataract surgeries has been made in the last two decades in many LMICs, progress towards improving the quality of

Box 9 Cataract surgery: steps needed to improve visual outcome and patient satisfaction  Improved case selection and risk assessment  Improved lens power calculation  Selection of better lens material and design  Improved surgical skills  Improved surgical technique  Better management of surgical complications  Prevention and treatment of endophthalmitis  Adequate correction of residual refractive errors after surgery  Treatment of posterior capsular opacification, which is the commonest complication of cataract surgery.  Access to health-related education and information  Better process of care  Community participation  Accountability

these surgeries has been disappointingly poor.63,174 Cataract surgery is one of the most frequently performed surgical procedures worldwide, including in this population. Improved case selection, lens power calculation, surgical skills, and management of surgical complications are essential to achieve good results as are the prevention and treatment of endophthalmitis, correction of residual refractive errors after surgery and 211

treatment of posterior capsular opacification which is one of the most common complications of cataract surgery (Box 9). Good outcomes can be obtained in LMIC settings if the quality of cataract surgery receives at least as much attention as the quantity of surgery.174,194 In LMICs, efforts and initiatives aimed to eliminate blindness and significant vision impairment due to cataract, the leading cause of vision loss, must focus, first and foremost, on improving the quality of existing cataract surgical services.

8.9 Vision impairment and blindness adversely affect other human rights

Vision impairment and blindness among older adults have been shown to result in substantial human and economic costs for individuals, families and the society. These include social isolation, diminished quality of life and self-image, increased morbidity (stress, depression, and disability) and mortality, and reduced productivity. Early detection and provision of effective management of sight-threatening eye conditions, especially cataract and refractive errors, could substantially reduce these human and economic costs and also impact positively upon the realisation of other human rights, including the right to education, human dignity, life, non-discrimination, equality, and privacy, access to information, food, housing and work (Box 10).

8.10 The right to eye health and Pakistan’s obligation

Pakistan has ratified several international human rights treaties recognizing the right to the highest attainable standard of health, including ICESCR. However, despite ratification, there is no national or sub-national framework for inclusion of the right to health in the country’s constitution, domestic law or health policies including those governing eye

Box 10 Human rights related to visual impairment and blindness and other aspects of eye health  The right to health  The right to information  The right to be free from discrimination on specified grounds  The right to life, liberty and security  The right to privacy  The right to education  The right to enjoy the benefits of scientific progress  The right to marry and found a family, and  The right to an adequate standard of living.

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health. By ratifying the ICESCR, the country has willingly committed to respect, protect and fulfil the right to health and other economic, social and cultural rights within its jurisdiction as outlined within this covenant. The obligation to respect requires States to refrain from taking measures that would interfere with the enjoyment of the right to health. The obligation to protect requires states to take all necessary measures to prevent non-state actors (individuals or groups) from interfering with the enjoyment of the right to health. As in the rest of Pakistan, much of the eye health care to the study population is provided outside the government system. The country has neither a regulatory authority nor adequate capacity to regulate eye care and to ensure that eye care services within its jurisdiction are of high quality, affordable and acceptable to the community. The obligation to fulfil incorporates both an obligation to facilitate and an obligation to provide, requiring the state to do all it reasonably can, within its available resources, to make high quality health care services available and accessible to all in its jurisdiction, especially those living in poverty. This study shows that there is a significant unmet need for good quality eye care particularly in certain population groups such as women, ethnic Bengalis and those living in poverty. It is clearly evident from the present study that much needs to be done to improve access to eye health related education and information, eliminate disparities, and improve access to affordable and high-quality health care, including cataract surgery. Implementation of the right to health, including eye health, is primarily the responsibility of the government. The right to health does not expect an overnight overhaul of the existing health system into ones that are comprehensive, integrated and accessible to all. Rather, it is subject to progressive realisation and resource availability. However, the right to health as well as each of the other human rights outlined in the ICESCR has a "minimum essential level" that must be satisfied by the States parties. “Such minimum core obligations”, as stressed by the Maastricht Guidelines, “apply irrespective of the availability of resources of the country concerned or any other factors and difficulties”.322 Pakistan must develop a time-bound plan of action for the progressive implementation of the right to health including eye health. It must also set performance indicators and benchmarks against which to measure progress in implementation. The selected indicators must be disaggregated at least by gender, race, ethnicity, socioeconomic status and age so as to identify disparities and disadvantaged and

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marginalised individuals and population subgroups that may otherwise be masked, as illustrated by our study. It is also important to note that some obligations arising from the right to health are immediately enforceable and are not subject to resource constraints or progressive realisation such as the obligation to guarantee non-discrimination and equal treatment in the enjoyment of the right to health. Unequal treatment such as the one observed in our study can indeed be addressed through strict implementation of this principle. Finally, international cooperation and assistance, as grounded in ICESCR, hold considerable promise for the full realisation of the right to health in Pakistan, especially in the area of eye health. International donor agencies, and non-governmental organisations have already played a significant role in the planning and implementation of key eye care programmes across Pakistan, but they need to do a lot more work to make the realisation of health a reality.

8.11 Summary points of Chapter 8

 Like other human rights, the right to health has a particular preoccupation with the vulnerable, marginalised and disadvantaged groups, including those living in poverty. This study has focused on one such group: the fishing communities in Karachi, a hard- to-reach group about whose eye health very little is known. Women, ethnic Bengalis and those with low socioeconomic status were particularly disadvantaged in several aspects of eye health. Effectiveness of eye care programmes or initiatives should be measured not only by the number of patients seen or surgeries performed, but also by progress towards the elimination of disparities.  Socioeconomic disadvantages were highly prevalent in the selected communities and far worse than the national average. Eye health planners must take these disadvantages into consideration when developing educational and awareness- raising programmes and cost models.  Developing an integrated health system, responsive to local priorities and accessible to all, is a human rights imperative as it is a public health goal. This study warns that lack of a systematic approach to addressing vision impairment and blindness in the target population is responsible for unnecessary vision loss. Such a system should ensure early detection and effective treatment (medical,

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surgical, laser or refraction), quality of care, risk-factor modification, education and counselling. While this cannot be achieved overnight, it is government’s obligation to provide such systems to the maximum of available resources, by itself or through third parties.  The right to health-related education and information is a fundamental right without which many other human rights are difficult to attain. Consistent with similar studies elsewhere and including Pakistan, our study underscores the need for eye health-related information in this population. Approximately half the people who have cataract, refractive errors and other sight-threatening conditions are not aware that they have these conditions. Everyone has the right to be informed and educated about when, where and how to use affordable, accessible and high quality eye care, including cataract surgery as well as how to prevent eye disease and promote eye health. This right should be promoted and implemented in a fair and equitable manner.  The quality of surgery received by this population falls short of the minimum standards set by the WHO. Quality of care is a core component of human rights- based approaches and must be respected.  Pakistan must develop a time-bound plan of action for the progressive implementation of the right to health including eye health. It must also set performance indicators and benchmarks against which to measure progress in implementation. The selected indicators must be disaggregated at least by gender, race, ethnicity, socioeconomic status and age so as to identify disparities and disadvantaged and marginalised individuals and populations subgroups that may otherwise be masked, as illustrated by our study.

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