A Participatory Assessment to Identify Strategies for Improved Cervical

Temas de actualidad / Current topics

Cervical cancer remains a leading cause of death for A participatory women in many countries of the world. In Latin America and the Caribbean, cervical cancer has be- assessment to identify come the primary cause of cancer-related deaths strategies for improved among women despite the introduction of screening programs more than 30 years ago. Each year in cervical cancer Latin America and the Caribbean 52 000 new cases are diagnosed, and 25 000 women die of the disease prevention and (1). Bolivia has one of the highest cervical cancer incidence rates in the Americas (58.1/100 000 women) treatment in Bolivia (2). An estimated 661 deaths per year in Bolivia are attributed to cervical cancer, equivalent to an age- standardized mortality rate of 22.2/100 000. This compares with 7.6/100 000 in Argentina and 12/ 1 Ilana G. Dzuba, 100 000 for all of South America. These statistics are Ruth Calderón,2 Siri Bliesner,3 particularly noteworthy given that cervical cancer 4 can be prevented by the timely identification and Silvana Luciani, treatment of precancerous lesions (3, 4). Fernando Amado,5 Bolivia is one of the poorest countries in and Martha Jacob1 South America. Some 70% of Bolivians live in pov- erty, with limited access to adequate housing, sani- tation, education, and health care. Surveys indicate that the public sector in Bolivia provides health care for 40%–60% of the population, and performs 70% of all the Pap smears done in the country for cervical cancer screening (5, 6). Various efforts related to cervical cancer prevention in Bolivia have yet to result in an apprecia- ble decrease in morbidity and mortality from the disease. These efforts have included Pap smear screening, creating the Component for the Detec- tion and Control of Women’s Cancer (Componente de Detección y Control del Cáncer de la Mujer) (the “Women’s Cancer Component”) as a unit within the Ministry of Health and Social Welfare (MHSW) (Ministerio de Salud y Previsión Social), and developing national clinical norms for the prevention of Key words: cervix neoplasms; women’s health ser- cervical cancer. To identify the obstacles that have vices; preventive health services; health knowledge, impeded the effectiveness of cervical cancer pre- attitudes, practice; Bolivia. vention, three organizations joined together in 2001 to coordinate an assessment of the existing cervical cancer prevention and treatment services and the 1 EngenderHealth, New York City, New York, United States of Amer- ica. Send correspondence to: Ilana G. Dzuba; e-mail: ilanadzuba development of appropriate intervention strategies. @gmail.com The three groups were the Women’s Cancer Com- 2 Bolivia, Ministerio de Salud y Previsión Social, Componente de De- ponent, EngenderHealth (an international repro- tección y Control del Cáncer de la Mujer, La Paz, La Paz, Bolivia (currently at Hospital de Clínicas, La Paz, Bolivia). ductive health organization based in New York 3 EngenderHealth, La Paz, La Paz, Bolivia; University of Michigan City), and the Pan American Health Organization. Population Fellows Program, Ann Arbor, Michigan, United States of America (currently at Seattle & King County Department of Public These groups adapted the World Health Organiza- Health, Seattle, Washington, United States of America). tion (WHO) three-stage “Strategic Approach” for 4 Pan American Health Organization, Washington, D.C., United States of America. strategic planning and reproductive health policy 5 Pan American Health Organization, La Paz, La Paz, Bolivia. and program development (7, 8) in order to de-

Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 53 Temas de actualidad • Current topics velop evidence-based recommendations for inter- FIGURE 1. The four departments of Bolivia (Cochabamba, ventions that could strategically enhance cervical- La Paz, Potosí, Santa Cruz) where the assessment of cancer-related services and community outreach, cervical cancer prevention and treatment was carried out, 2001–2002 and thereby reduce cervical cancer rates in Bolivia. The results of the Bolivia assessment could be used to inform programming and policy by identifying management, technological, sociocultural, and economic issues that affect the quality of services and BRAZIL respect for clients’ rights. This article reports on the findings from the assessment phase of the Strategic Approach process carried out with cervical cancer prevention and treatment services in Bolivia.

METHODOLOGY LA PAZ COCHABAMBA SANTA CRUZ The methodology employed was an adapta- tion of the first stage of WHO’s three-stage Strategic Approach. The first stage itself included three parts: (1) a literature review, (2) qualitative research, and POTOSÍ

(3) development of recommendations for policy, POTOSÍ programming, and research.

Literature review

In order to assess the current status of cervical used prevention and treatment technologies. A mul- cancer prevention and treatment services and to tidisciplinary team of 15 departmental health au- identify gaps in available information in Bolivia, thorities, providers, program managers, community during March through December 2001 a consulting advocates, social scientists, and local and interna- anthropologist compiled country-specific morbid- tional researchers conducted fieldwork (in-depth in- ity and mortality statistics, information from avail- terviews with stakeholders and observations of able secondary sources on cervical cancer preven- health services) in January and February 2002. Prior tion and treatment, and details about Bolivia’s to the fieldwork, the team was oriented to qualita- sociodemographic, political, and economic context. tive research methods, the Strategic Approach, and The anthropologist reviewed general sources and the results of the literature review. The team also de- materials identified through an Internet-based liter- vised three strategic questions to guide instrument ature search and interviews with informants. Liter- development, data collection, and analysis: (1) Is it ature from the Government of Bolivia, nongovern- necessary to improve the current information sys- mental organizations (NGOs), and national and tem and cancer registry for the prevention, diagno- international research centers were included in the sis, and treatment of cervical cancer? (2) Is it neces- review. Also, in collaboration with the manager of sary to introduce new interventions for screening, the Women’s Cancer Component and the president diagnosis, and treatment of precancerous cervical of the Cancer Registry of La Paz, a list of key in- lesions? (3) Is it necessary to improve the existing country individuals and institutions related to cer- services for the management of cervical cancer? vical cancer prevention was developed. Through Fieldwork was conducted in rural, urban, and these contacts, additional documentation and pub- periurban areas of four of the nine departments of lished literature were identified and then reviewed. Bolivia. The four were Cochabamba, La Paz, Potosí, Ultimately, information from all relevant sources and Santa Cruz (Figure 1). These departments were was compiled into one text. selected purposefully to include the country’s three geographic and ecological zones and because they offered a range of cervical cancer prevention and Qualitative research treatment services. Potosí was included because of its disproportionately high rate of cervical cancer The literature review generated questions to (93.5/100 000, vs. the national rate of 58.1/100 000). explore concerning the interactions among women, The research team divided in two, with each health services and providers, and the currently group covering two departments over a period of

54 Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 Temas de actualidad • Current topics two weeks. Existing clients of health facilities, pub- officials, program managers, oncologists, gynecolo- lic and private sector health facility personnel, lab- gists, cytologists, pathologists, and local NGO rep- oratory personnel, program managers, community resentatives from all departments of the country— members, community leaders and authorities, and including those not visited during the fieldwork— other stakeholders were selected to participate in were convened at a two-day technical input work- the assessment by convenience and snowball sam- shop. These experts reviewed the assessment re- pling. These informants’ perspectives on cervical sults and conclusions, identified evidence-based cancer and its prevention, barriers to and facilita- priorities, and, in small groups, reached consensus tors of services, and sociocultural norms were col- on recommendations for additional research, policy lected through semistructured in-depth interviews development, and programmatic interventions. based on six interview guides, which corresponded to respondent type. The interview guides were developed by the 15-member research team, based on FINDINGS international standards for cervical cancer prevention and treatment. Literature review The fieldwork interviews were conducted in- dividually or in small groups (three to five persons), The literature review yielded 53 references and the interviewer recorded written notes in a field that were included in the final report about the so- notebook. Prior to all interviews, respondents ciodemographic, political, and economic context in granted oral consent for their involvement in the which Bolivia is situated; 16 of the 53 referenced study, after receiving an explanation of the objec- items addressed the impact of cervical cancer on the tives, interview procedures, and participants’ rights. country’s female population. Bolivia’s health sys- Direct nonparticipant observations of facili- tem is divided into the public sector—comprised of ties and provision of services provided data about the MHSW health services and the social security infrastructure and aspects of quality of care. Obser- health services—and the private sector, which in- vations were performed in facilities where cervical cludes NGOs and private clinics. The MHSW is re- cancer prevention and/or treatment services are sponsible for developing national norms and poli- available, including cytopathology laboratories. cies for the public sector. However, administration Three observation guides (for laboratories, health and provision of health services is decentralized care sites, and client-provider interaction) identi- and is the responsibility of the respective Depart- fied the physical characteristics (e.g., cleanliness, mental Health Service (Servicio Departamental de equipment and supplies, and infection prevention) Salud) of each of the nine departments. and the characteristics of interpersonal communica- Cytology-based (Pap smear) screening was tion to be examined. introduced in Bolivia’s public sector in 1988 (11), The data from the interviews and the observa- and cervical cancer detection activities were initi- tions were analyzed continuously during the field- ated in the cities of La Paz, Santa Cruz, and Sucre work at daily team meetings, and again following the following year. In 1989 the MHSW established completion of the fieldwork. As the primary aim of the Women’s Cancer Component, which now func- the Strategic Approach is to improve quality of ser- tions within the National Program of Sexual and vices and attention to the community, the team Reproductive Health (Programa Nacional de Salud coded and analyzed the data according to eight Sexual y Reproductiva). The Women’s Cancer Com- internationally accepted aspects of quality of care ponent is staffed by a single person, who is respon- (9, 10): (1) access to services; (2) organization of ser- sible for developing, administering, and supervis- vices; (3) supervision and monitoring; (4) infrastruc- ing national programs for the prevention and ture, equipment, and supplies; (5) information sys- treatment of women’s cancer, including cervical tem and cancer registry; (6) training and professional cancer. That person also provides technical assis- development; (7) knowledge and experience of tance to and coordinates with the director of the health personnel; and (8) knowledge and information Sexual and Reproductive Health Program in each sources of clients and community members. Com- department in order to strengthen the implemen- mon themes and recurring issues were identified, tation of national norms, training programs, and and the salient points were drawn into conclusions. community-focused information and education.6 In 2001 the Women’s Cancer Component developed the National Norms, Regulations, Protocols Development of recommendations 6 Bolivia, Ministerio de Salud y Previsión Social; EngenderHealth; Pan American Health Organization. Evaluación de la situación de cáncer Once the results from the literature review de cuello uterino en Bolivia: revisión bibliográfica [unpublished re- and qualitative research were compiled, MHSW port]. La Paz, December 2001.

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TABLE 1. Cervical cancer prevention and treatment services that should be available in public sector facilities, according to Government-issued norms, Bolivia, 2001–2002

Cervical cancer prevention and treatment services that should be available at each level Level of health care of care, according to Ministry of Health and facilities Type of health care facilities Social Welfare norms

Primarya Health posts and health centers Pap screening, transport of samples to labora- (outpatient) tories, referral of suspicious cases, follow-up

Secondary District hospitals (outpatient and Pap screening, transport of samples to labora- inpatient) tories, referral of suspicious cases, follow-up, diagnosis, and treatment of precancerous lesions in a few facilities

Tertiary Specialized hospitals, maternity Main referral centers for screening, diagnosis, hospitals, and pathology and treatment of precancerous lesions and laboratories cancer; centralized laboratories process and analyze all Pap smears and biopsies, and provide results to respective facilities Oncology centers (including radiotherapy) Specialized hospitals Screening, diagnosis, and treatment of precancerous lesions and cancer

a The public sector primary care facilities are usually the only health care facilities that are accessible to rural populations. However, at times, even these service sites can be distant and difficult to access.

and Procedures for the Detection and Control of cer in Bolivia. The literature review also indicated Cervical Cancer (Norma Nacional, Reglas, Protocolos y the need for further research into systematic con- Procedimientos para la Detección y Control del Cáncer de straints and peoples’ perceptions. Cuello Uterino) to establish standards for the early detection and treatment of precursor lesions and cancer in women ages 25–49 years, and thus to re- Qualitative research duce morbidity and mortality. The norms stipulate the objective of achieving 80% screening coverage of A total of 583 interviews were conducted with the target population. Other objectives include cre- stakeholders. Interviews were done with: 92 clients ating awareness about the importance of periodic at service delivery sites; 114 community members in screening and strengthening the technical and man- public settings; 284 MHSW, private, and social secu- agement capabilities of the public sector health sys- rity health facility personnel; 2 traditional healers; 75 tem, specifically the MHSW, in order to ensure that community leaders and authorities; and 16 medical quality cervical cancer prevention and treatment and nursing university staff and students (Table 3). services are offered (11). At the time of the writing of A total of 56 facility observations were performed, this article, copies of these norms could not be found and 14 client-provider interactions were recorded. in MHSW health facilities since the norms had never Our results are presented in the following subsec- been disseminated. The norms direct that cervical tions according to the eight internationally accepted cancer screening and, at a minimum, referral for quality of care analysis codes mentioned earlier. treatment of precancerous lesions and cancer, should be available at primary, secondary, and tertiary lev- Access to services. In the public sector, as a part of els of MHSW health facilities (Table 1). the Seguro Básico de Salud (Basic Health Insurance), Since 1970 the private sector has implemented free cervical cancer prevention services were autho- activities to prevent cervical cancer in Bolivia. rized for all women between the ages of 25 and 49, NGOs that work in sexual and reproductive health while other women had to pay. (In December 2002, have incorporated screening into their clinical ser- after this study had been completed, the Basic vices, and the groups refer clients with abnormal Health Insurance was abolished and replaced by a Pap smears to nearby oncology units for confirma- new policy that prioritizes maternal and child tory diagnosis and, if necessary, treatment. Table 2 health. The new Seguro Universal Materno Infantil shows a summary of screening and referral services (Universal Maternal/Infant Insurance) provides in the public and private sectors. free maternity and postnatal care for women, as The literature review confirmed the dearth of well as child health services for children less than available literature and statistics about cervical can- five years old, but limits free cervical cancer preven-

56 Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 Temas de actualidad • Current topics

TABLE 2. Pap-based screening services and referral services in the public sector and in the private sector in Bolivia, 2001a

Sector/Level Referral/treatment centers used for (Type of facility) Providers management of abnormal Pap smears

Public sector MHSW primary (health centers, General practitioners, nurses, or Tertiary level or oncology hospitals health posts)b, c nurse auxiliaries MHSW secondary (district hospitals) General practitioners, gynecologists Tertiary level or oncology hospitals MHSW tertiary (specialty, oncology) Gynecologists/Oncologists Gynecology/Oncology units Social security clinics and hospitals Gynecologists Oncology hospitals

Private sector NGO clinicsd General practitioners Oncology hospitals Private clinics Gynecologists/Oncologists Treated on-site or referred to oncology hospitals

Source: Sistema Nacional de Información en Salud, 2001 (6). a Public sector facilities provide 70% of the Pap smears in Bolivia, and private sector facilities provide the other 30%. b Pap screening was not available in some rural primary care facilities due to absence of trained personnel. In these cases, patients were referred to other, higher-level facilities for screening. c MHSW = Ministry of Health and Social Welfare. d NGO = nongovernmental organization.

tion services to only women who are pregnant and can only be obtained in some public sector reference up to six months postpartum (12)). The MHSW pol- hospitals, oncology institutes, and a few private icy of providing free services to women in a broad clinics in urban areas. Because colposcopy and pre- age group helped to overcome previous financial cancer treatment are not available in the department barriers to prevention services for many women. Al- of Potosí, women from that department who have though mandated by national policy, both women abnormal Pap smears are often referred for manage- and providers were often unaware that cervical can- ment to Sucre, the capital city of the neighboring de- cer prevention services were available at no cost to partment of Chuquisaca. Treatment for cervical can- eligible women. Pap smears were available at nearly cer is offered at four oncology units in the country, all levels of public and private sector facilities, al- in the cities of La Paz, Santa Cruz, Cochabamba, and though the personnel at some primary level MHSW Sucre. These oncology units do not have systems to health posts and centers in rural areas were not offer palliative care for women with terminal cervi- trained in cervical sampling (Table 2). cal cancer, although hospital staff at two of the sites A centralized MHSW cytology laboratory is are attempting to address this need. available in eight of the country’s nine depart- Clients and community members provided ments. Pando, the one department without its own extensive information about their experiences ac- cytology laboratory, sends all of its Pap smears to cessing cervical cancer screening and treatment for the city of La Paz for analysis. Every MHSW health precancerous conditions. These persons com- facility in each of the nine departments is assigned mented that personal interaction with providers is to one of these eight labs. The social security lab in particularly important and that they prefer provid- the city of La Paz processes most of the samples ers who take the time to talk, explain procedures, from social security centers and clinics (with the ex- and respond to questions. They described a number ception of Chuquisaca, Cochabamba, and Santa of obstacles that hinder their receiving appropriate Cruz). Private cytology labs also exist and are used and thorough care. Frequently, a shortage of by public and private providers alike. Because of re- trained providers or nonfunctioning equipment reportedly slow turn-around times and/or lack of quires that women be referred to the more costly trust in the analysis done at some MHSW labs, private sector for screening or treatment of precan- some providers at MHSW facilities interviewed cerous conditions, for which the individual women prefer to use private labs. must bear the cost. Some women reported that they Colposcopy (a confirmatory diagnostic test for have gone to the fee-for-service private clinics for cervical abnormalities) and treatment for precancer- Pap smears because of experiences at public health ous lesions are not readily available in all depart- facilities with poor hygiene, unfriendly providers, a ments due to a lack of trained and experienced per- lack of continuity of care, long delays for services, sonnel as well as equipment shortages. In the and lost screening results. For example, in a quali- departments where these services are available, they tative interview, one woman from the department

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TABLE 3. People interviewed and number of interviews of Potosí complained about the problem of lost and observations completed in assessment of cervical screening results: “At the health center the nurse cancer prevention in Bolivia, 2001–2002 demands that we take the Pap test, but we never get the results, so we do not know anything because No. of interviews Location of interviews/ and observations they do not show it to us. They only say that they Persons interviewed completed don’t have it after a whole year.” Many women who were interviewed men- In the community tioned that screening services in urban and periur- Women 55 ban areas are easily accessible for those who reside Men 37 Community leaders 15 near health care facilities. Although Pap smear ser- Representatives of community groups 7 vices are available in most rural health posts, women from some rural areas reported that they Public sector health facilities (Ministry of Health must travel far to these facilities because of large and Social Welfare and social security) catchment areas. Since diagnostic and treatment General practitioners/Gynecologists 62 services are only available in urban centers, rural Oncologists 2 Radiotherapists 1 women must travel far for management of abnor- Nurses 33 mal conditions. Transportation problems as well as Nurse auxiliaries 20 time away from work and family often make these Social workers 9 trips difficult and costly. Language also serves as a Facility administrators 4 barrier for some women. Most providers speak just Statisticians 15 Spanish, while 11.5% of the population speaks only Midwives 1 Clients 92 an indigenous language (13). Many women who Observations of interaction between health have not had Pap smears dismiss screening because care provider and client 14 of shame, self-consciousness, fear of test results, Observations of facility infrastructure 56 and perceived social stigma. Pap smears are often associated with sexually transmitted infections. Private sector health facilities (private clinics, nongovernmental organization clinics, volunteer organizations, and pharmacies) Organization of services. There is currently no na- Directors 11 tional strategy to achieve the goal of 80% cervical Medical doctors 11 cancer screening coverage among all women aged Nurses 9 25–49 or to ensure adequate follow-up of screened Nurse auxiliaries 3 women. Opportunistic screening is reportedly pro- Communications specialists 3 vided as a component of reproductive health ser- Social workers/Counselors/Psychologists 7 Pharmacists 4 vices, but rarely for women attending health facili- Others (statisticians, facility administrators, ties for other reasons. This results in many missed receptionists, educators) 5 opportunities to expand coverage (1). Mobile screening campaigns have been conducted sporadically in Laboratories some parts of the country, increasing the number of Biotechnicians/Cytologists/Cytotechnicians 10 Pathologists 2 Pap smears performed, but without adequate link- Lab technicians 2 ages for follow-up and treatment. At the majority of public sector facilities visited, health personnel esti- Health and political authorities mated that 50% to 80% of women who undergo Prefects/Heads of human development 6 screening are lost to follow-up. Institutional infor- Mayors/Directors of health in the mayor’s office 10 mation and tracking systems, coordination of testing Directors of Departmental Health Service/ Health program managers 18 and treatment services, and basic logistics for trans- Heads of Sexual and Reproductive Health porting tests to labs and communicating results to programs 9 providers and women in a timely manner are lack- Directors of districts and health services 24 ing, except in a small number of facilities. Addition- Coordinators of Basic Health Insurance 8 ally, the capacity to provide appropriate counseling to clients on the importance of follow-up varies Universities Directors of medical/nursing schools 8 among providers and facilities. Doctors and nurses Directors of nurse auxiliary schools 2 have not received counseling training, although a Medical/Nursing students 6 few nurses interviewed claimed to provide women with information on cervical cancer prevention and Traditional medicine practices treatment. Providers at NGO clinics were found to Practitioners of traditional medicine 2 Total: 583 be more likely than those at MHSW facilities to give clients information and support, as the public health

58 Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 Temas de actualidad • Current topics facilities generally did not have trained counselors to TABLE 4. Treated cases of precancerous lesions and can- discuss cervical cancer prevention. cer in one department in Bolivia, 2001 All the public and private cytology laborato- Women with ries reported having sufficient staff to cope with the abnormal results present workload, with each technician processing Total No. of no. of women lost to follow-up fewer than 50 slides per day (complying with inter- Diagnosis women treated No. % national guidelines) (14). Bolivia has recently joined the Pan American Cytology Network (Red Paname- CIN Ia 94 555 b ricana de Citología) (15), which works to improve ad- CIN II 48 8 40 83 CIN III 21 5b 16 76 ministrative and technical quality among affiliated Invasive cancer 10 8c 220 laboratories. The Oncology Institute of Eastern Bo- livia (Instituto Oncológico del Oriente Boliviano), in a CIN = cervical intraepithelial neoplasia. b Treatment with hysterectomy. the city of Santa Cruz, and the Hospital de Clínicas, c Treatment with radiotherapy. in the city of La Paz, are the two Bolivian facilities that belong to the Pan American Cytology Net- work. These two labs as well as most private labs ous quality control through the standardized use of were found to coordinate slide transport and deliv- the Bethesda System of classification (16) and exter- ery of results better than other public sector facili- nal quality assurance as member labs of the Pan ties. These labs do this by assigning specific days American Cytology Network. Internal quality con- for these operations to occur, thereby minimizing trol was reported in all public sector laboratories. delays and preventing backlog, reportedly a notice- However, health care providers who were inter- able problem in other labs. The transport and viewed noted that they do not receive feedback from timely delivery of results was an even greater chal- the laboratory personnel who assess the Pap smears lenge to health care facilities in rural areas due to about the quality of the samples. Overall, there is no more complex logistical issues, such as greater dis- system of supervision that encompasses clinical, tances from the cytology labs and impassable roads. technical, and service delivery support for cervical Referral systems for women requiring col- cancer prevention and that also includes assessing poscopy and treatment of precancerous lesions were the quality of the Pap smears taken, quality of the found to be weak or lacking altogether, compound- test results, or proficiency of laboratory personnel. ing the already existing deficiency in precancer treatment. There are no established referral net- Infrastructure, equipment, and supplies. All the works, and although standard referral and feedback public and private facilities visited are clean and forms exist, they are rarely utilized. It is generally well maintained and have running water and elec- up to the client to inform referring providers of any tricity. Appropriate exhaust systems, however, are treatment or follow-up care received. Women sus- lacking in most of the laboratories. Where treatment pected of having cervical cancer, however, are more for precancer is available, there is a shortage, for the aggressively tracked and referred for additional care caseload, of functioning colposcopes and machines than those women whose Pap results denote a pre- for loop electrosurgical excision procedure (LEEP), cancerous condition. Nevertheless, loss to follow-up which is an outpatient technique to remove precan- is also an issue for women undergoing radiother- cerous tissue. In addition, there are no repair and apy, with one facility reporting that nearly 50% of maintenance systems for this equipment. The oncol- their clients do not complete treatment (Table 4). ogy units where cervical cancer is managed are equipped with modern technology to treat cervical Supervision and monitoring. The Women’s Cancer cancer, but effective pain medications for palliative Component of the MHSW supervises the public sec- care, such as morphine, are difficult to obtain be- tor cervical cancer prevention and treatment services cause of stringent regulations. These regulations re- provided in the departments. Rather than focusing sult in a lengthy and involved prescribing or pur- on technical know-how, this supervision concen- chasing process, which providers prefer to avoid. trates on such logistical and administrative aspects as monitoring the numbers of Pap smears, and cam- Information systems and cancer registry. The Na- paigns and other prevention activities. There is no tional Health Information System (Sistema Nacional monitoring of program results against established de Información en Salud) is a comprehensive data- indicators such as coverage rates, follow-up of base of health indicators. The National Health women who screen positive, or compliance of health Information System collects one statistic related to personnel with national norms. cervical cancer: the number of Pap smears per- The reference cytology labs in the cities of La formed. There are no data on screening coverage Paz and Santa Cruz reportedly ensure more rigor- rates, the number of women treated for precancer-

Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 59 Temas de actualidad • Current topics ous conditions, or follow-up rates, which could aid ever, during interviews, many providers proved program monitoring and evaluation. There is no not to be aware that Pap smears detect treatable, standardized system for registering biographical or precancerous lesions. The majority of primary care screening information in the public sector health providers who were interviewed are not aware of care facilities and labs, although the MHSW has re- the importance of treating precancerous lesions to cently introduced new forms for all service sites to prevent cancer and of the possibility of using out- use for this purpose. Providers interviewed said patient procedures, such as LEEP and cryotherapy, that they never received any orientation on how to to treat precancerous lesions. Few gynecologists in- use them, therefore they continued to use an array terviewed are experienced in practicing LEEP and of non-uniform forms and registers. In many cryotherapy, and they perform hysterectomy in- MHSW health facilities, client registers were often stead. Some are trained in LEEP, but none of the in- incomplete and not updated, with the staff describ- terviewed providers is experienced with cryother- ing the documentation process as very labor inten- apy to treat precancer (17). sive. Cytology labs used their own forms and iden- Most of the providers and administrators who tification numbers for each Pap smear processed, were interviewed are not aware of the National precluding any linkage between clinic and lab Norms, Regulations, Protocols and Procedures for records to corroborate clinical information and rec- the Detection and Control of Cervical Cancer (11). ognize repeat Pap smears performed on the same Even among those who are aware of these norms, woman in different facilities. many of the providers are resistant to the changes in A computerized information system to record protocol, or they disagree with the target age range and retrieve information on coverage, laboratory and frequency of Pap screening. Most providers data, follow-up rates, and compliance with treat- and laboratory personnel are not familiar with the ment has been developed by the Oncology Institute Bethesda System of classification, which is recom- of Eastern Bolivia. Depending on the outcome of mended by the norms. As a result, a variety of no- pilot tests, the Santa Cruz system could be a proto- menclature is used across the country, likely lead- type for other locales. ing to difficulty comparing cytology results. There is no national population-based cancer Interviews with doctors in the country’s four registry or official death certificate in Bolivia, which oncology centers affirmed that the physicians are forces statisticians to estimate mortality data. How- experienced in performing radical hysterectomies, ever, there are independent, population-based can- chemoradiation, and radiotherapy. These special- cer registries in Bolivia that cover the cities of La ists also conduct palliative surgery and palliative Paz and El Alto, Oruro and Potosí, and Sucre. Ac- radiotherapy, but they agree that it is important to cording to interviews with MHSW officials, the In- develop standards for palliative care that include ternational Agency for Research on Cancer will be pain management as well as psychosocial and emo- providing technical assistance on the use of a soft- tional care. (After the fieldwork for this assessment ware package to strengthen these cancer registries. was completed, a multiregional, multidisciplinary team published clinical guidelines for palliative Training and professional development. Medical care in Bolivia (18)). and nursing schools include theoretical and practi- cal aspects of cervical cancer prevention in the basic Knowledge and information sources of clients curricula, which were designed many years ago. and community members. Most women clients Consequently, recent essential knowledge about the and community members who were interviewed development of cancer has not been incorporated. for the assessment have heard of the Pap smear but Bolivia possesses the in-country capacity for train- misunderstand the purpose of the test, the testing ing in cytology, colposcopy, and LEEP. However, procedure, and how frequently it should be per- professional development courses for doctors and formed. They often do not associate Pap smears nurses on screening, colposcopy, or treatment of with cervical cancer prevention, but instead believe precancerous conditions are not offered. Occasional the Pap smears are used to diagnose or treat sexu- in-service, on-the-job, or short-term special-focus ally transmitted infections. For instance, one health trainings on screening are conducted. In addition, care facility client in the department of Cocha- some NGO staff reportedly receive ongoing train- bamba explained that even though she utilizes a ing in cervical cancer prevention through intern- local clinic, she has never been educated about cer- ships or by attending workshops and conferences. vical cancer: “At the health center they teach us to care for children, to take care of pregnant mothers, Knowledge and experience of health personnel. but they don’t talk about cancer. I heard on the Most providers who were observed as they per- radio that [cervical cancer] is serious, but I don’t formed Pap smears were technically adept. How- know how.”

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Many women are reportedly ashamed to re- research, policy, and programmatic recommenda- quest the test because of stigmas attached to sexu- tions for health authorities. The suggestions in- ally transmitted infections and concerns about cluded developing strategies to improve coordi- being considered promiscuous. In contrast, a nation, implementing norms for cervical cancer smaller proportion of women seek out Pap smears screening and treatment within the health system, whenever they have an abnormal discharge be- strengthening existing screening and treatment cause they mistakenly associate the test with the methods (such as by improving training systems detection of vaginal infections. A common belief and quality control in laboratories), and imple- among most women interviewed is that cancer al- menting projects to pilot information systems to ways results in death. For example, one woman track cervical cancer prevention and client follow- from the department of La Paz expressed a com- up activities. Through the workshop, alliances mon sentiment: “If I am going to die, why should I among participants were created and important undergo treatment?” The women are not aware linkages were formed in order to help resolve the that precancerous cervical lesions can be treated, issues identified during the assessment. For exam- thus preventing cervical cancer and death. Addi- ple, communication among important national tionally, women explained that they tend to ad- stakeholders in the prevention and treatment of cer- dress health problems as they experience physical vical cancer was fortified, a group of oncologists symptoms and do not tend to use health services drafted a “manifesto of dedication” to reducing cer- for disease prevention. vical cancer, and alliances among pathologists took According to interviews with male commu- root. These relationships are crucial catalysts for nity members, most of them do not know about Pap improving the quality of cervical cancer services. smears, cervical cancer, or the relation between the two. They also do not recognize their potential role as advocates for women’s health. This is despite the DISCUSSION fact that in some parts of the country such health care decisions as whether or not a woman has a Pap Although there were similar findings across smear are determined by the husband, according to the departments where the fieldwork was done, the women and providers interviewed. Knowledge some limitations of this study should be consid- about Pap smears and cervical cancer varies among ered. The assessment team was provided Govern- local government authorities, with most unaware of ment identification cards, which may have intro- the potential for treatment of precancerous lesions. duced a response bias for any interviewees who However, in the department of Santa Cruz, where perceived that all team members were Government much emphasis has been placed on cervical cancer representatives. A selection bias of communities, fa- prevention, local authorities are very knowledge- cilities, and individuals may have been introduced, able about the issues and committed to addressing as the team was unable to visit certain preselected the problem. rural and urban sites due to social unrest during the Accurate lay information about cervical can- time of the fieldwork. Although many interviews cer and its prevention is limited. Informational ma- were conducted and valuable contributions made terials were rarely seen during the assessment, and by providers and administrators from all levels of those that did exist were often outdated. Commu- the health system, some key district directors and nity health programs and health care providers health providers were unavailable for interviews. tend to provide information on other health issues, In recognition of the persistent high rates of neglecting cervical cancer. Instead, women who cervical cancer incidence and mortality in Bolivia, were interviewed identified personal experience national health authorities have taken initial steps to and word of mouth as key sources of information address the problem by establishing the Women’s about cervical cancer. In rural areas, radio spots Cancer Component within the MHSW, developing are also prime information sources, along with national screening and treatment norms, and offer- women’s groups. Overall, the women interviewed ing free services for screening and treatment of pre- indicated a preference for illustrated over text- cancerous lesions. However, in order to achieve a heavy informational materials. substantial impact on morbidity and mortality, interventions must broaden screening coverage of appropriate women, ensure the quality of screening, Technical input workshop make treatment of precancer more widely available, guarantee adequate and complete follow-up of In May 2002, 60 leaders in cervical cancer pre- women with abnormal screening results, and enable vention, treatment, and policy attended the two- routine monitoring of program targets through a day technical input workshop in order to develop comprehensive information system.

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One of the primary concerns raised by the theless, even with access to a vaccine, screening will study findings is that the MHSW’s existing cervical remain a necessary component of any comprehen- cancer prevention and treatment program focuses sive cancer control program for the foreseeable fu- heavily on screening and not enough on treatment ture. For that reason, research into simpler, more of precancerous conditions to prevent progression to cost-effective, more acceptable approaches to cervical cancer. In order to reduce disease, screening screening are currently under way in several coun- programs must be coupled with treatment services tries worldwide (e.g., Peru, South Africa) (21, 22). for such conditions. While treatment services of this Most notable are methods that use vinegar or io- type exist in a few tertiary facilities, many health dine solutions and visual inspection by a trained care providers do not understand that Pap smears health provider to identify potential abnormalities, detect treatable, precancerous lesions and that out- and objective tests to detect HPV DNA (23, 24). patient treatment of these lesions prevents cervical While these approaches are still being evaluated, cancer. Health care providers should be updated on initial results suggest that they have the potential to this issue, and enough of them should be trained save more lives at lower cost than does Pap screen- and equipped so as to provide treatment for precan- ing (22). The results from these investigations could cerous lesions in an adequate number of facilities have a substantial impact on cervical cancer pre- across the country. Bolivia’s current approach to and vention, benefiting women in Bolivia and other technical capacity for treatment of cervical cancer countries around the world. are adequate. However, treatment compliance must be improved by establishing efficient systems for Acknowledgements. We would like to thank tracking women with positive screening results. Verónica Kaune for coordinating the assessment; Screening and diagnosis of precancer and cancer Marcelo Alvarez Ascarrunz, Marcia Arandia de without appropriate and complete treatment is of lit- Ramos, Waldo Dávila, Leonor Flores, Ruth Gálvez, tle value in reducing mortality rates. Mario Abraham Méndez Ramos, Dolly Montaño, Despite a screening focus, there is no clear Norma Quispe, Teresa Rivero, and María Luz Te- strategy for attaining the MHSW’s goal to screen rrazas for their tireless participation on the re- 80% of women. Women rarely request Pap smears, search team; Margarita Díaz and María Dolores in part due to a number of obstacles to accessing ser- Castro for their expert technical assistance; the vices and also because of a basic lack of understand- Departmental Health Services in the cities of ing of the purpose of screening. Therefore, oppor- Cochabamba, La Paz, Potosí, and Santa Cruz for tunities to efficiently broaden screening coverage their help with coordinating site visits; the facilities across the target population must be developed. We that allowed us to visit and become familiar with recommend efforts that go beyond opportunistic their services; and all the persons who agreed to be screening, to a system where women accessing care interviewed. María Lorencikova provided valuable for any health need are able, if eligible, to get a Pap insight and guidance throughout the project. Fi- smear. In addition, in order to request services, nally, we are grateful to Sally Girvin, Jan Bradley, women and men need accurate information about Victor Conde, and Susana Asport for their input on cervical cancer, the importance of screening, and previous drafts of this manuscript. Funding for this treatment of precancerous lesions to prevent cer- assessment was provided by the Bill & Melinda vical cancer. Finally, reliable, well-planned, quality Gates Foundation through the Alliance for Cervical services must be available and accessible. Cancer Prevention. Women in Bolivia are diagnosed with cervical cancer and face death at unnecessarily high rates, despite existing prevention and treatment services. Steps are already being taken to implement the rec- SINOPSIS ommendations of this assessment (19). That would contribute to the larger, ongoing strategic pro- Evaluación participativa orientada a identificar cess of planning, developing appropriate policy, estrategias para mejorar la prevención y el strengthening cervical cancer prevention services, tratamiento del cáncer cervicouterino en and bolstering outreach efforts that increase com- Bolivia munity demand for services. Enacting such strategies will help to reduce the country’s burden of dis- En este trabajo se evalúan la organización y disponibilidad ease from cervical cancer. The best hope for cervical de servicios de prevención y tratamiento del cáncer cervicouterino en cuatro de los nueve departamentos de Bolivia y cancer prevention worldwide, however, is for an se identifican estrategias de intervención. De 2001 a 2002 effective prophylactic vaccine against human papil- un equipo multidisciplinario de 15 personas llevó a cabo en lomavirus (HPV), the virus that causes cervical can- Bolivia una evaluación que comprendió una revisión biblio- cer. Such a vaccine is being developed (20). Never- gráfica sobre el cáncer cervicouterino en el país, entrevistas

62 Rev Panam Salud Publica/Pan Am J Public Health 18(1), 2005 Temas de actualidad • Current topics semiestructuradas con 583 partes interesadas y 56 observa- Bolivia tiene una unidad establecida dentro del Ministe- ciones de servicios de salud de diversos niveles. En un taller rio de Salud y Previsión Social cuya función es crear, ad- celebrado después del trabajo de campo se reunieron 60 líde- ministrar y supervisar programas nacionales para la pre- res de todos los departamentos del país para revisar los re- vención y el tratamiento del cáncer cervicouterino. Dicha sultados y determinar su prioridad, y para elaborar reco- unidad, en coordinación con las autoridades sanitarias en mendaciones basadas en las pruebas científicas recaudadas cada uno de los departamentos del país, también busca for- con miras a fortalecer los servicios de prevención del cáncer talecer la imposición de normas nacionales, actividades de cervicouterino. capacitación, e iniciativas comunitarias de tipo informativo Bolivia tiene una de las tasas más altas de cáncer cervi- o educativo. No obstante, los servicios de tamizaje no están couterino en el mundo. No obstante, no tiene ningún pro- debidamente vinculados con los de diagnóstico y trata- grama organizado ni tampoco ninguna estrategia destinada miento de lesiones precancerosas. Por añadidura, los servi- a lograr que el tamizaje del cáncer cervicouterino alcance cios de diagnóstico y tratamiento no siempre abundan o son una cobertura mínima de 80%, que es la meta establecida accesibles. Si se han de mejorar los servicios y la atención a por el Ministerio de Salud y Previsión Social. Una buena la comunidad, es necesario llevar a cabo investigaciones, parte de la población carece de información sobre los servi- efectuar cambios programáticos y adoptar cambios de políti- cios para la prevención y el tratamiento de lesiones precan- cas a fin de fortalecer la planificación y el proceso decisorio cerosas, o no puede llegar a estos servicios con facilidad. Los en conexión con los aspectos administrativos, tecnológicos, proveedores de atención sanitaria en el sector público cal- socioculturales y económicos del asunto. culan que de 50 a 80% de las mujeres sometidas al tamizaje no regresan a su seguimiento porque no hay ningún sis- Palabras clave: neoplasmas del cuello uterino; tema que garantice un seguimiento adecuado con fines de servicios de salud para mujeres; servicios de salud pre- diagnóstico o tratamiento. Muchos prestadores de atención ventiva; conocimientos, actitudes y práctica en salud; de salud desconocen que los frotis de Papanicolaou se usan Bolivia. para detectar lesiones precancerosas.

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