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. Declaration relating to disposition of project thesis/dissertation I hereby grant to the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or in part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all property rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstracts International (this is applicable to doctoral theses only). …………………………………………………………… ……………………………………..……………… ……….……………………...…….… Signature Witness Date The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction for a period of up to 2 years must be made in writing. Requests for a longer period of restriction may be considered in exceptional circumstances and require the approval of the Dean of Graduate Research. FOR OFFICE USE ONLY Date of completion of requirements for Award: ORIGINALITY STATEMENT ‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project's design and conception or in style, presentation and linguistic expression is acknowledged.’ Signed …………………………………………….............. Date ……………………………………… iii COPYRIGHT STATEMENT ‘I hereby grant the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all proprietary rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstract International. I have either used no substantial portions of copyright material in my thesis or I have obtained permission to use copyright material; where permission has not been granted I have applied/will apply for a partial restriction of the digital copy of my thesis or dissertation.' Signed …………………………………………….............. Date ……………………………………… AUTHENTICITY STATEMENT ‘I certify that the Library deposit digital copy is a direct equivalent of the final officially approved version of my thesis. No emendation of content has occurred and if there are any minor variations in formatting, they are the result of the conversion to digital format.’ Signed …………………………………………….............. Date ……………………………………… iv 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.