INT J TUBERC LUNG DIS 11(5):539 543 2007 The Union Identifying barriers to effective tuberculosis control in Senegal: an anthropological approach F. Hane,* S. Thiam, A. S. Fall, L. Vidal,* A. H. Diop, M. Ndir, C. Lienhardt * Socio-anthropologie de la santé, UR 02, Institut de Recherche pour le Développement, Dakar, UMR 145, Programme Tuberculose, Institut de Recherche pour le Développement, Dakar, Institut Fondamental d Afrique Noire (IFAN), Université Cheikh Anta Diop, Dakar, Programme National de Lutte Anti-Tuberculeuse, Dakar, Senegal; Clinical Trials Division, International Union Against Tuberculosis and Lung Disease, Paris, France SUMMARY SETTING: Low tuberculosis (TB) cure rates (average 53%) and high treatment default rates (average 28%) were reported in Senegal between 1999 and 2001. OBJECTIVE: To qualitatively evaluate the ability of TB patients to access and complete treatment in Senegal, with a view to helping to develop suitable strategies to improve TB control. METHODS: Anthropological study conducted in a series of public and private, urban and rural health facilities in 2001 and 2002. The qualitative methods used included semi-structured and in-depth interviews of health staff, patients and relatives, focus group discussions, and observations carried in health facilities. RESULTS: Problems were identified at several levels of health care. The main impediments to successful patient outcomes identified were: limited access to TB diagnosis and treatment facilities, poor communication between health personnel and patients, poor quality information provided to patients, poorly applied directly observed treatment, lack of a strategy to trace defaulting patients and limited supervision of the treatment units by the district leadership team. CONCLUSION: The anthropological analysis of patient care is an appropriate means of addressing complex public health problems in disease control and identifying solutions that are acceptable, sustainable and adapted to the local context. KEY WORDS: tuberculosis control; anthropology; treatment adherence; qualitative studies THE BURDEN OF TUBERCULOSIS (TB) is very high in Africa, where incidence rates are twice as high as in other parts of the world, mainly due to the human immunodeficiency virus (HIV) pandemic, socio-economic problems and weaknesses in the health sector. 1,2 Limited access to treatment and interruption of treatment before due completion are known to add to the difficulty of controlling TB. 3,4 In the World Health Organization (WHO) Africa region, 11% of the new smear-positive pulmonary TB cases diagnosed in 2002 were reported to have defaulted from treatment. 5 In Senegal, reported cure rates in the years prior to our study were low (53% on average between 1999 and 2002), with a high proportion of patients interrupting treatment before completion (28% on average over the same period). 6 A decade ago, Sumartojo 7 pointed out that patient adherence is multifaceted and complex, and is affected by factors ranging from the characteristics of individual patients to qualities of the social and economic environment. Several authors reported that responses to the question of adherence (health care provider behaviour, patient attitudes, presence or absence of directly observed treatment [DOT]) must necessarily take into account a vast array of factors, 8 11 and that TB control should not focus solely on drug intake but should conceive novel strategies that are adapted to patients needs and the local context. 12 This is one of the areas in which social sciences can be expected to be useful for the identification of means to improve TB control. 13,14 This concept has prevailed in the development of a study that assembled an epidemiological and socio-anthropological approach to try and assess determinants of adherence to TB treatment in Senegal, with the aim of developing and testing a novel strategy to ensure efficient case holding. We report here the findings of the anthropological survey. Ethical approval was obtained from the Ethics Committee of the Senegalese National Scientific Research Council. METHODS In Senegal, TB control activities are coordinated by the National TB Control Programme (NTCP). Treatment Correspondence to: Christian Lienhardt, MD, PhD, International Union Against Tuberculosis and Lung Disease, 68, Boulevard St Michel, 75006 Paris, France. Tel: ( 33) 1 44 32 03 60. Fax: ( 33) 1 43 29 90 87. e-mail: clienhardt@iuatld.org Article submitted 5 June 2006. Final version accepted 10 January 2007. [A version in French of this article is available from the Editorial Office in Paris and from the Union website www.iuatld.org]
540 The International Journal of Tuberculosis and Lung Disease of TB is free and consists of a combined 8-month regimen (2RHZE/6HE).* TB treatment units are located in public hospitals and district health centres (DHC) throughout the country. The DHCs are the functional unit of TB control placed under the responsibility of the head doctor, who designates a person as responsible for TB diagnosis and treatment. In 1994, Senegal adopted the DOTS strategy, under which medical teams are requested to implement daily delivery of treatment to patients under direct observation of drug intake (DOT), at least during the initial 2-month intensive phase. 15 The study took place from January 2001 to October 2002. The socio-anthropological study included several qualitative methods, which are detailed below. 1 Semi-structured interviews were held with health providers at various levels of the health care system (including medical officers, nurses, assistant nurses, health workers, laboratory technicians and community health workers), as well as with patients and their relatives. Private health providers, members of non-governmental organisations (NGOs) and international organisations involved in TB control were also interviewed. The interviews explored their knowledge of TB and its management, opinions relating to TB control and reasons for failure. A total of 120 persons were interviewed, including 60 health staff members. Health structures and institutions were selected according to their role in TB control, their place within the health system hierarchy and their physical location (i.e., urban, semi-urban or rural). 2 In-depth interviews were conducted with TB patients, family members and health staff in charge of the TB Control Units in the DHCs. Interviews specifically investigated the perception of the disease and its social aspects and consequences. The purpose of these interviews was to understand the observed practices and explore some of the points arising from the semi-structured interviews. Forty interviews were held. 3 Focus group discussions (FGDs) were used to assess community perceptions of TB. The majority of these groups were homogeneous with regard to age group and sex, and were composed of 8 to 10 members. The FGDs were organised within the health facilities and investigated notions such as knowledge and perception of TB, means of infection, treatment characteristics, etc. Four FGDs were held. 4 Observation of health care providers was undertaken to question the day-to-day practices and activities of the health personnel and to assess their interaction with the patients. This was carried out in one urban hospital and in three urban and rural DHCs. * 2RHZE/6HE: 2 months of combined rifampicin, isoniazid, pyrazinamide and ethambutol, followed by 6 months of combined isoniazid and ethambutol. 5 Case histories: Ten case histories were collected. This involved spending several days with individual patients and their families throughout the course of the study to document day-to-day activities related to the disease and its treatment. Analysis The collected data were analysed through a qualitative evaluation of the contents based on selected key words and key notions. Data from interviews, observations and FGDs were manually reviewed and classified according to a number of thematic areas such as organisation of case management, perceptions of tuberculosis, health-seeking behaviour, interactions between patients and care providers, and content and understanding of messages. For each of these thematic areas, hypotheses were generated by merging the data collected with the various methods cited above, leading to the findings we present here. RESULTS The analysis of the wide range of data collected through interviews and observations identified dysfunctions at several levels of care, which were found to have a strong impact on patients access and adherence to treatment. These can be grouped into three distinct areas across all types of health facilities: access to care, interactions between patients and health providers and organisation of TB control within the health facilities. Access to care Patients often experienced difficulties reaching the health centre, especially in rural areas, due to long distances and/or poor transport infrastructure. Additional costs were often incurred, even though drugs are supposed to be delivered free of charge, and this had an impact on the overall cost of care supported by the patients. About 12% of the patients interviewed declared that they were unable to cover the daily transport costs to collect their drugs at the health facility, and were therefore not able to collect their drugs regularly or for the whole length of treatment. Patient/health provider relations In most health centres, we observed poor communication between health care providers and patients, both at the time of diagnosis and registration and during treatment. We noted wide variability in the content of the messages that were delivered to the patients at time of starting treatment: while in some places these messages were relatively correct (i.e., the patient was informed in simple terms of the mechanisms of disease transmission, the duration of treatment and its effects), in other places messages were very brief and made in very general terms (e.g., you have TB, you need to take drugs for 8 months ). In such instances, interviews showed that patients knew very little about
Barriers to effective TB control in Senegal 541 the disease, its transmission mechanisms and its treatment. FGDs revealed that about 24% of the patients did not understand the importance of taking a complete course of treatment and thought that treatment could be stopped when they felt cured. In addition, it was frequently observed that health care providers contributed to the stigmatisation of the patient through the delivery of messages carrying restrictive implications, such as: from now on, you need to sleep alone and to eat alone, using your own spoon. It was also observed that the contact between patients and health providers when the patients attended to collect their drugs was generally limited in time: in some health centres, contact between patients and health care providers was simply reduced to the delivery of the monthly allocation of treatment against the registration ticket, without even an exchange of words. It became apparent that, in most cases, it was up to the patient to try and create a personal relationship with the health provider. On the health personnel side, it was often observed that, while TB diagnosis and treatment is supposed to be the responsibility of nurses or medical assistants, day-to-day activities related to patient treatment and follow-up were usually relegated to less qualified health staff with limited training, such as health care workers, community health workers or drug dispensers. These agents were therefore put in the situation of working beyond their area of expertise and taking on more responsibility than expected. This delegation of tasks to unqualified agents was found to lead to an increasing confusion of the skills and competencies of each professional group within the health centre, which was ultimately detrimental to patient care. In addition, it was noted that, in the absence of these agents, no other health care provider in the health facility was able to respond to patients problems. Lastly, while patients do need to pay a registration fee ranging from US $0.3 to $0.8 each time they attend the health centre to collect their drugs, it was observed that, in some health centres, patients were charged an additional treatment fee at the time of their drug collection. Organisation of TB control within the health facility and at district level The approach taken for treatment initiation and followup was found to vary considerably between health structures. After hospitalisation for 3 4 weeks, patients were either requested to return to the hospital every month to assess their condition and receive a month s supply of drugs, or were referred to a health centre near their home. Patients diagnosed in private practices were generally not notified to the NTCP, and TB treatment varied. Although DHCs are required to deliver treatment to patients daily under strict supervision by the health personnel at least during the first 2 months, we found that drugs were usually allocated to patients in bulk for periods ranging from 4 days to 2 months. DOT during the intensive phase was in fact duly implemented in only one of the four health centres visited, and this only for patients living near the health centre. For those living in more distant areas, treatment was usually self-administered. Follow-up of patients during treatment was variable. Patients were generally assessed briefly when they received their supply of drugs, but bacteriological checks at 2, 5 and 8 months were usually respected. However, especially in DHCs, it was observed that patients who failed to attend treatment delivery were usually not traced and were simply registered as lost to follow-up. Treatment units in DHCs did not generally benefit from any logistic support to improve treatment follow-up and case holding, and in three of four treatment units no action was taken to trace defaulters and bring them back to treatment. Lastly, at district level, we observed poor involvement of district health management teams in the supervision of the TB Control Units, and there was no concerted effort to try and implement strategies to improve programme indicators. DISCUSSION More than any other disease, TB reveals the weaknesses of health systems. The qualitative evaluation of the ability of patients to access and complete treatment and the identification of the many shortfalls in the management of TB control at local and national level can help to develop flexible context-oriented and patientcentred approaches for TB control. 16 In rural areas of Senegal, where patients have to travel long distances to health centres, the positive effect of free treatment is often offset by the indirect costs incurred for transportation, and patients with limited income default from treatment due to these costs. 17 Under these circumstances, delivery of treatment under strict directly observed conditions by a health worker is usually perceived as a constraint, and may discourage patients rather than facilitate adherence to treatment. 18 It has recently been emphasised that application of the DOTS strategy should be as flexible as possible and adapted to local situations, resources and environment. 19 Improved access to drugs would thus be greatly facilitated through the decentralisation of treatment from the health centres to the health posts, as this would contribute to reducing the indirect costs related to transport and favour the implementation of flexible DOT through the use of community workers or relatives. Observational studies conducted in Kenya and Malawi have shown that decentralisation of treatment, associated with a choice of treatment supervisor, had a positive effect on treatment success rates. 20,21 In this respect, the involvement of community health workers and patients relatives in supervision of treatment introduces flexibility that
542 The International Journal of Tuberculosis and Lung Disease should suit the patients by offering them the possibility to choose the mode of supervision most adapted to their daily life. 22 Our anthropological study identified types of interaction between patients and health care providers similar to those identified in anthropological work conducted elsewhere in West Africa, showing the role played by poor relationships between health care providers and patients in the rejection of the public health care system. 23 While for common illnesses patients tend to get around these problems by obtaining direct access to drugs (usually through street drug sellers), TB, due to its specificity and long duration, requires patients to attend established health structures hence the need for a continuous relationship between patient and health care provider. Qualitative studies have created a framework for critical reflection on the day-to-day behaviours of health care providers. 13,14 This process has contributed to the identification by the health providers themselves of areas where they can change the way they relate to patients. This study has shown that improvements in the quality of this relationship should form the core of any strategy that seeks to improve treatment adherence. Elimination of TB will not be possible without improvements in patient/provider relations and the establishment of modes of communication in which patients can question health care providers about their disease, the type of treatment and its likely adverse events, etc., thus shifting from a closed monologue to an open dialogue. The implementation of such strategies, however, necessitates careful training of community health workers in parallel with a strengthening of health staff communication skills, as well as sustained supervision of the activities carried out at health post level by the district health team. Solving the problem of miscommunication between patients and care providers in public health centres and improving their relationship requires both a change in the attitude of the providers towards the patients and the presence of an appropriate structure, where privacy can be preserved. Improved attention to and communication with the patients enhances their ability and willingness to complete treatment. 3,7 In this regard, a clear objective for improved communication would be to promote the standardisation of health messages developed on the basis of commonly agreed notions by health care providers and adapted to the questions and concerns of the patients. Health professionals are thus faced with a double challenge: first, to establish among themselves good practice related to effective TB treatment, and second, to bring this message to a larger field of public health. With the rising burden of the dual HIV-TB epidemic, there is a pressing need to identify ways to jointly deliver antiretroviral therapy and TB treatment over the long term. 24 In this respect, successful methods of ensuring patient adherence to TB treatment can serve as models for HIV/acquired immune-deficiency syndrome (AIDS) control programmes. 25 Innovative strategies are required and the creative application of a rigorous scientific approach is needed to identify appropriate solutions to the utterly human challenge of adherence. This can only be achieved through a combination of quantitative and qualitative research methods and the promotion of a comprehensive research agenda enabling the critical use of scientific evidence. The interdisciplinary approach is one possible way to make TB control more responsive and reflective of local health systems, social structural constraints and resources, and therefore more effective. 26 Acknowledgements The authors wish to thank Dr J Ogden for her contribution to developing many of the ideas leading to the methods used in this paper and for her helpful comments on the manuscript; all staff in the health structures and institutions who contributed to the study; and the Programme PAL at the Ministry of Research, France, and the Department for International Development, United Kingdom, for funding the study. References 1 Raviglione M C, Dye C, Schmidt S, Kochi A. Assessment of worldwide tuberculosis control. Lancet 1997; 350: 624 629. 2 Corbett E L, Watt C J, Walker N, et al. The growing burden of tuberculosis. Arch Intern Med 2003; 163: 1009 1021. 3 Comolet T M, Rakotomalala R, Rajaonarioa H. Factors determining compliance with tuberculosis treatment in an urban environment, Tamatave, Madagascar. Int J Tuberc Lung Dis 1998; 2: 891 897. 4 Harper M, Ahmadu F A, Ogden J A, McAdam K P, Lienhardt C. Identifying the determinants of tuberculosis control in resource-poor countries: insights from a qualitative study in The Gambia. Trans Roy Soc Trop Med Hyg 2003; 97: 506 510. 5 World Health Organization. WHO report 2004. Global tuberculosis control surveillance, planning, financing. WHO/HTM/ TB/2004.331. Geneva, Switzerland: WHO, 2004. 6 Thiam S, Massi E, Ndir M, Diop A H, Ba F, Lienhardt C. La lutte contre la tuberculose au Sénégal : situation actuelle de la prise en charge. Med Trop 2005; 65: 43 48. 7 Sumartojo E. When tuberculosis treatment fails. A social behavioural account of patient adherence. Am Rev Respir Dis 1993; 147: 1311 1320. 8 Barnhoorn F, Adriaanse H. In search of factors responsible for non-compliance among tuberculosis patients in Wardha district, India. Soc Sci Med 1992; 34: 291 306. 9 Rubel A J, Garro L A. Social and cultural factors in the successful control of tuberculosis. Public Health Rep 1992; 107: 626 636. 10 Uplekar M, Rangan S. Alternative approaches to improve treatment adherence in tuberculosis control programme. Indian J Tuberc 1995; 42: 67 74. 11 Farmer P. Social scientists and the new tuberculosis. Soc Sci Med 1997; 43: 347 358. 12 Volminck J, Matchaba P, Garner P. Directly observed therapy and treatment adherence. Lancet 2000; 355: 1345 1350. 13 Ogden J A. Improving tuberculosis control: social science inputs. Trans Roy Soc Trop Med Hyg 2000; 94: 135 140. 14 Lienhardt C, Ogden J H, Sow O Y. Interdisciplinary approach for the control of tuberculosis in developing countries: rethinking the social context of illness. In: Gandy M, Zumla A, eds. Return of the White Plague: essays on the social sciences and medical interface in tuberculosis. London, UK: Verso, 2003: pp 194 206.
Barriers to effective TB control in Senegal 543 15 World Health Organization. Global Tuberculosis Programme: framework for effective TB control. WHO/TB/94.179. Geneva, Switzerland: WHO, 1994. 16 Lienhardt C, Ogden J A. Tuberculosis control in resource-poor countries: have we reached the limits of the universal paradigm? Trop Med Int Health 2004; 9: 833 841. 17 Jaiswal A, Singh V, Ogden J A, et al. Adherence to tuberculosis treatment: lessons from the urban setting of Delhi, India. Trop Med Int Health 2003; 8: 625 633. 18 Macq J C M, Theobald S, Dick J, Dembele M. An exploration of the concept of directly observed treatment (DOT) for tuberculosis patients: from a uniform to a customised approach. Int J Tuberc Lung Dis 2003; 7: 103 109. 19 Maher D, Uplekar M, Blanc L, Raviglione M. Treatment of tuberculosis: concordance is a key step. Br Med J 2003; 327: 822 823. 20 Kangangi J K, Kibuga D, Muli J, et al. Decentralisation of tuberculosis treatment from the main hospitals to the peripheral health units and in the community within Machakos district, Kenya. Int J Tuberc Lung Dis 2003; 9 (Suppl 1): S5 S13. 21 Nyirenda T E, Harries A D, Gausi F, et al. Decentralisation of tuberculosis services in a urban setting, Lilongwe, Malawi. Int J Tuberc Lung Dis 2003; 7: 521 523. 22 Adatu F, Odeke R, Mugenyi M, et al. Implementation of the DOTS strategy for tuberculosis control in rural Kigoba District, Uganda, offering patients the option of treatment supervision in the community 1998 1999. Int J Tuberc Lung Dis 2003; 7: 563 571. 23 Vidal L, Fall A S, Gadou D, eds. Les professionnels de santé en Afrique de l Ouest. Entre savoirs et pratiques. Paris, France: L Harmattan, 2005: 329 pp. 24 Harries A D, Hargreaves N J, Chimzizi R, Salaniponi F M. Highly active antiretroviral therapy and tuberculosis control in Africa: synergies and potential. Bull World Health Organ 2002; 80: 464 469. 25 Farmer P, Leandre F, Mukherjee J S, Claude M S, Nevil P, Smith-Fawzi M C. Community based approaches to HIV treatment in resource-poor settings. Lancet 2001; 358: 404 409. 26 Lienhardt C, Rustomjee R. Improving tuberculosis control: an interdisciplinary approach. Lancet 2006; 367: 949 950. RÉSUMÉ CADRE : Entre 1999 et 2001, de faibles taux de guérison de la tuberculose (TB) (53% en moyenne) et des taux élevés d abandon de traitement (28% en moyenne) ont été observés au Sénégal. OBJECTIFS : Evaluer la capacité des patients atteints de TB à accéder et à suivre de manière complète le traitement au Sénégal, en vue de faciliter l adoption de stratégies appropriées pour aider à améliorer la lutte contre la TB. MÉTHODES : Etude anthropologique, menée dans plusieurs établissements de santé, publics et privés, urbains et ruraux en 2001 et 2002. Les méthodes qualitatives utilisées incluaient à la fois des interviews semi-structurées et en profondeur du personnel de santé, des patients et de leurs proches, mais aussi des discussions thématiques de groupes, et des observations faites dans les centres de santé. RÉSULTATS : Des problèmes ont été identifiés à plusieurs niveaux du système de santé. Les principaux obstacles à la réussite des soins aux patients étaient : un accès limité au diagnostic et au traitement de la TB ; une faible communication entre le personnel de santé et les patients ; une qualité médiocre des informations transmises aux patients ; une utilisation insuffisante de la méthode du traitement directement observé (DOT) ; une absence de stratégie pour retrouver les patients ayant abandonné le traitement et une supervision insuffisante des unités de traitement de la part de l équipe de direction régionale. CONCLUSION : L analyse anthropologique des soins au patient est un moyen très approprié de faire face aux problèmes complexes de santé publique dans le cadre de la lutte contre les maladies et permet l identification de solutions acceptables, pérennes et adaptées au contexte local. RESUMEN MARCO DE REFERENCIA : Entre 1999 y 2001 se comunicaron en Senegal bajas tasas de curación de la tuberculosis (TB) (promedio del 28%) y altas tasas de abandono del tratamiento (promedio del 53 %). OBJETIVOS : Evaluar en forma cualitativa la capacidad de los pacientes con TB de acceder al tratamiento y completarlo en Senegal, con miras a la elaboración de estrategias apropiadas que mejoren el control de la TB. MÉTODOS : Estudio antropológico realizado en una serie de establecimientos públicos y privados en zonas urbanas y rurales entre 2001 y 2002. Los métodos cualitativos utilizados comprendieron entrevistas en profundidad y semiestructuradas a los profesionales de la salud, los pacientes y a sus familiares, observaciones y grupos de discusión realizados en los centros de salud. RESULTADOS : Se pusieron en evidencia problemas a diferentes niveles de la atención de salud. Los principales obstáculos al tratamiento exitoso fueron : acceso limitado a los centros de diagnóstico y tratamiento de la TB ; comunicación deficiente entre el personal sanitario y los pacientes ; mala calidad de la información suministrada a los pacientes ; fallas en la ejecución del tratamiento corto directamente observado ; ausencia de una estrategia de búsqueda de los pacientes que abandonan el tratamiento y supervisión limitada de las unidades de tratamiento por parte del equipo líder del distrito. CONCLUSIÓN : El análisis antropológico de la atención al paciente constituye un instrumento muy apropiado a fin de responder a los problemas complejos de salud pública referentes al control de la enfermedad y a la búsqueda de soluciones aceptables, sostenibles y adaptadas al contexto local.