A situação epidemiológica da tuberculose (TB) no âmbito mundial e no Brasil ainda evidencia importante magnitude, acrescentando-se o problema crescente da Tuberculose Multiresistente (TBMR), as quais apresentam associação com as desigualdades sociais. Com a finalidade de contribuir para o conhecimento a respeito da TBMR e aprimorar as práticas de controle da doença, o presente estudo teve como objetivos: descrever o perfil de características sócio-demográficas e clínico-epidemiológicas dos pacientes portadores de tuberculose multirresistente, inscritos em um Centro de Referência para a Tuberculose do Estado de São Paulo, no período de agosto de 2002 a dezembro de 2009; e identificar, na trajetória percorrida pelos portadores de TBMR, inscritos no ano de 2009, nessa Unidade de Saúde, desde a percepção dos primeiros sinais e sintomas da TB até a constatação da multirresistência, aspectos que podem estar associados à ocorrência da multirresistência. O perfil sócio-demográfico e clínico-epidemiológico teve abordagem quantitativa, é descritivo, retrospectivo e seccional; os dados utilizados foram secundários e obtidos de fichas de notificação do Sistema de Informação da TBMR (Sistema TBMR, de âmbito nacional) e de prontuários dos pacientes matriculados na Instituição onde foi realizado o estudo. Na segunda etapa, o estudo teve abordagem qualitativa, tendo os depoimentos de alguns portadores de TBMR como matéria prima para a apreensão e a análise de aspectos da vida dos enfermos. A primeira etapa teve como população de estudo 188 pacientes e, para a segunda etapa, foram realizadas 19 entrevistas, que foram analisadas segundo técnica de análise de discurso apropriada. Para ambas as etapas do estudo foram observados os aspectos éticos. Os dados foram coletados no período de 22 de fevereiro a 15 de junho de 2010. Os resultados da primeira etapa do estudo revelam que 93,1% dos pacientes encontravam-se na faixa etária produtiva, 64,4% eram homens, a maior parte (34,6%) tinha de quatro a sete anos de escolaridade, 61,6% apresentavam precária inserção no mercado de trabalho; 74,2% eram procedentes do Município de São Paulo, com história de tratamentos anteriores para a TB (98,9%), 22,9% apresentavam etilismo e 28,2% tabagismo. A segunda etapa do estudo mostra que alguns aspectos podem ter contribuído para o desenvolvimento da TBMR, sobretudo relacionados às condições de vida e trabalho dos acometidos, além do acesso aos serviços de saúde. Em geral, as trajetórias percorridas pela maior parte dos pacientes revelam demora na busca da assistência, na realização e obtenção do resultado de exames e no diagnóstico da enfermidade; carência de informações sobre a doença e sobre os serviços de saúde que oferecem assistência. Conclui-se sobre a necessidade de expandir as políticas públicas de controle da doença e de ampliar a acessibilidade dos pacientes à assistência adequada. / The epidemiological situation of tuberculosis (TB) worldwide and in Brazil still shows significant magnitude, adding to the growing problem of multi-resistant tuberculosis (MRTB), which are associated with social inequalities. In order to contribute to the knowledge of the MRTB and improve the practices of disease control, this study had as objectives: to describe the profile of socio-demographic and clinical-epidemiological characteristics of patients with multi-resistant tuberculosis, enrolled in a Reference Center for Tuberculosis of State of Sao Paulo, in the period from August 2002 to December 2009; and identify the path travelled by the patients with MRTB, enrolled in the year 2009, this Health Unit, from perception of early signs and symptoms of TB up to find the multi-resistance, aspects that may be associated with the occurrence of multi-resistance. The socio-demographic profile and clinical-epidemiological had a quantitative approach, is descriptive, retrospective and sectional; the data used were secondary and obtained from reporting forms of the Information System of MRTB (MRTB system, nationwide) and Medical records of patients enrolled in the Institution where the study was conducted. In the second step, the study had a qualitative approach, having the declaration of some patients with MRTB as raw material for the seizure and analysis of aspects of life of the sick people. The first step was to study a population of 188 patients and, for the second step, 19 interviews were conducted, was analyzed by the technique of discourse analysis. For both steps of the study, were observed the ethical aspects. Data were collected in the period from February 22 to June 15 of 2010. The results of the first step of the study show that 93.1% the patients were in the productive age group, 64.4% were men, most part (34.6%) had four to seven years of study, 61.6% showed precarious insertion in the labor market; (74.2%) was from municipality of São Paulo, with history of previous treatment for TB (98.9%), 22.9% showed alcoholism and 28.2% smoking. The second step of the study shows that some aspects may have contributed to the development of MRTB, mainly related to living conditions and the work involved, in addition to access to health services. In general, the path travelled by most patients shows delay in seeking assistance, in realization of exams and obtaining of results, and in diagnosis of disease; lack of information about the disease and about the health services that provide assistance. It is concluded about the need to expand public policies to control the disease and to expand the accessibility of patients to appropriate assistance.

Résumé exécutif. Introduction. La tuberculose est une maladie infectieuse qui constitue un fardeau pour la société et en ce sens qu’elle est responsable d’un important taux de mortalité spécifique, surtout dans les pays en développement. Malgré les grands progrès en termes de méthodes de diagnostic, de prévention et de traitement, près de 9 millions de nouveaux cas apparaissent chaque année au niveau mondial et les 30% se trouvent en Afrique. On estime que la tuberculose est responsable de près de 2 millions de morts par an, principalement parmi les populations les plus pauvres. Pourtant, la maladie peut être guérie à l’aide des médicaments dont le coût est inférieur à 18 USD par patient. Pour faire face à ce problème lié à la tuberculose, l’OMS a recommandé vers 1994 l’application de la stratégie « Directly Observed Treatment Short-course, (DOTS) ». Cette stratégie, constituée de 5 points clés, n’a donné que des résultats partiels. Par conséquent, les experts de l’OMS ont conçu et ont publié une autre stratégie appelée « Halte à la Tuberculose » en 2006. Cette nouvelle stratégie, allant au delà des 5 principaux points de la stratégie DOTS, fait appel à toutes les structures sanitaires publiques et privées et à tous les acteurs de santé, y compris la communauté, pour participer au dépistage et à la prise en charge des tuberculeux. A Madagascar, la lutte contre cette maladie est coordonnée par l’équipe du Programme national de lutte contre la tuberculose (PNT). Ce programme est fonctionnel depuis 1991 et applique les stratégies recommandées par l’OMS. Par ailleurs, il a conçu un manuel destiné aux prestataires de soins et aux différents responsables du niveau opérationnel. Le PNT s’est fixé comme principaux objectifs d’améliorer le système de dépistage et d’atteindre un taux de guérison de 85%. En 2006, 15 ans après la mise en œuvre du programme, le taux de notification des nouveaux cas de tuberculose à frottis positif (TPM+) était de 81 pour 100.000 habitants par an et la proportion de réussite au traitement pour ce dernier groupe de tuberculeux était encore de 78%. La létalité et le taux d’échec au traitement à Madagascar est relativement bas. La relativement faible proportion de réussite, inférieure à l’objectif, est avant tout liée au taux d’abandon élevé. Depuis 2006, le PNT a adopté le système décentralisé dans la prise en charge des malades. Généralement, un tuberculeux a un parcours long et ardu à effectuer à partir de l’apparition des premiers signes d’imprégnation tuberculeuse jusqu’à la guérison. Ce parcours est à la fois d’ordre géographique et thérapeutique. Bien que les malades présentent des signes cliniques quasiment identiques, demandant un schéma thérapeutique standard, ils vivent dans des contextes différents. Et chaque contexte a un effet spécifique sur l’adhésion au traitement. Pourtant, ces contextes sont rarement considérés dans les stratégies conçues au niveau national et international. Soulignons que Madagascar est un vaste pays de 590.000 km² ayant des contextes (contexte géographique, contexte culturel, nombre de formations sanitaires, etc.) très variables d’une région à l’autre et d’un district à l’autre. L’application des directives sans tenir compte ces différents contextes locaux pourrait être à l’origine de la non réussite su système de suivi des malades et donc du contrôle de la tuberculose. Inversement, les districts et les centres de diagnostic et de traitement (CDT) qui adaptent les directives selon leurs contextes et/ou qui prennent des initiatives répondant aux contextes des malades, ont plus de chance de réussir le contrôle de la tuberculose. Objectifs. D’une manière spécifique, la présente thèse vise à : - Situer la lutte contre la tuberculose à Madagascar ; - Identifier les mécanismes d’adaptation et les initiatives locales associés à la performance du PNT ; - Proposer une solution réaliste au travers des résultats obtenus. Méthodologie générale. Pour atteindre les objectifs, une série de 5 études a été menée. Chacune de ces 5 études a son design spécifique. Mais d’une manière générale, ces études ont fait appel à des approches qualitatives et quantitatives. Elles nous ont amené à (i) interviewer des malades TB et éventuellement un membre de leur famille (ii) interviewer les prestataires de soins et les responsables du PNT dans différents niveaux (iii) exploiter les dossiers et les rapports relatifs à la prise en charge des tuberculeux. Les indicateurs utilisés par le PNT, dans le cadre du système de suivi des malades sous traitement sont le taux de réussite englobant le taux de guérison et le taux du traitement terminé, le taux d’échec, le taux de décès et le taux d’abandon. Il est constaté que la réussite au traitement est affectée par la résistance aux médicaments et la co-infection Tuberculose et VIH. Nous avons donc décidé de prendre le taux d’abandon comme l’indicateur principal permettant d’évaluer la performance du système de suivi des tuberculeux sous traitement. Méthodologie spécifique et résultats. Les 2 premières études sont des études rétrospectives visant à situer la lutte contre la tuberculose à Madagascar. L’une a ciblé spécifiquement les dossiers des malades dans le 3ème CDT de la ville d’Antananarivo et l’autre a visé tous les rapports de prise en charge des malades dans tout le pays de 1996 à 2004. Il a été observé que le taux d’abandon au traitement des tuberculeux à Madagascar est resté élevé depuis la mise en place du PNT en 1991 et la mise en route de la stratégie « DOTS » en 1994. Une diminution de ce taux a été constatée mais très lente, de l’ordre de 4,5 points (21,0% - 16,5%) en 9 ans (de 1996 à 2004). La 3ème étude a analysé la relation entre le niveau de performance du PNT et les améliorations organisationnelles sur le système de prise en charge des malades. Cette étude a ciblé un échantillon de 24 districts sanitaires ayant pris en charge au moins 100 malades par an entre 1996 et 2006. Elle a permis d’observer que le PNT a apporté des différentes améliorations organisationnelles sur la prise en charge des tuberculeux : amélioration de la couverture géographique en CDT, formation des agents de santé sur la stratégie DOTS etc. Par ailleurs, le PNT a obtenu de l’appui financier et technique de la part des organismes internationaux, plus particulièrement l’OMS, le Global Fund et la Coopération Française. Toutefois, en se référant aux taux annuels d’abandon au traitement, la performance de l’ensemble des 24 districts s’occupant la grande partie des tuberculeux ne s’est pas améliorée. En outre, l’analyse selon le district montre des niveaux de performance différents. La 4ème étude est une étude qualitative qui vise à identifier les adaptations des directives du PNT et les initiatives locales prises par les responsables de terrain et les prestataires de soins. Elle a été menée auprès des CDT d’un échantillon de 6 districts et a permis d’identifier une série d’adaptations des directives et d’initiatives locales expliquant la performance des CDT et des districts. Elles sont constituées principalement par (i) des initiatives renforçant la motivation des malades dans leur prise de traitement, comme la responsabilisation des malades et des membres de famille dans le suivi du traitement (ii) des initiatives assurant une meilleure accessibilité des soins, comme la création de centre d’hébergement et l’offre de frais de déplacement (ii) et des initiatives améliorant la qualité des soins comme le recrutement d’un agent spécifique tuberculose. La 5ème étude a été effectuée pour tester, sur l’ensemble des CDT à Madagascar, les facteurs de performance identifiés sur un échantillon de CDT inclus dans la 4ème étude. Le taux de réponse de cette étude était plus de 80%. L’analyse a permis d’observer que durant la période précédant la décentralisation, le taux d’abandon était de 16,8% (n=35.090), il a passé à 11,5% (n=28.688) après la décentralisation. Les CDT publics et les CDT intégrés dans les grands hôpitaux ont un taux d’abandon élevés par rapport aux autres CDT privés et/ou intégrés dans les formations sanitaires de base. La différence est significative quelle que soit la période. Il a été observé que les CDT performants ont effectué des adaptations et ont pris d’initiatives répondant aux contextes de leurs malades. En outre, plus le nombre d’initiatives augmente, plus la performance du CDT est élevée. Les principales initiatives associées à la performance d’un CDT sont : - L’incitation des malades à passer au CDT et au laboratoire lors de la réalisation des analyses des crachats ; - La distribution des médicaments à tour de rôle ; - La présence d’agent spécifique TB dans le CDT ; - La présence obligatoire ou sollicitée d’un membre de la famille lors des séances d’Information, Education et Communication (IEC) ; - L’implication des anciens malades dans les IEC de groupe et dans le soutien psychologique des malades ; - L’implication des ONG dans la prise en charge des malades ; - La délivrance des résultats des analyses sous pli fermé ; - La réalisation d’au moins 4 séances d’IEC personnelles ; - La réalisation régulière d’IEC de groupe ; - La présence de centre d’hébergement ; - L’implication des agents communautaires dans la prise en charge des malades. Toutefois, le niveau d’association de ces initiatives à la performance varie selon les caractéristiques du CDT (Grand hôpital versus Formation sanitaire de base ou hôpital de district ; CDT public versus CDT privé). Par ailleurs, certaines initiatives prises par les prestataires dans des contextes spécifiques n’étaient pas favorables à l’adhésion au traitement et ont conduit à des taux d’abandon plus élevés. L’autorisation donnée à un membre de la famille de récupérer les médicaments est associée à l’abandon au traitement dans les centres privés et dans les formations sanitaires de base. L’exigence de certificat de résidence des malades est associée à l’abandon au traitement dans les grands hôpitaux. Suggestions Etant des bonnes pratiques validées au travers d’une enquête auprès de plus de 80% des CDT, les initiatives identifiées au terme de la présente thèse méritent d’être diffusées auprès des managers de terrain du PNT et des prestataires de soins. Par contre, elles ne doivent pas être copiées directement. Nous suggérons une approche pratique évitant l’application mécanique de ces initiatives. Il s’agit d’une stratégie de « coaching » et est constituée de 2 axes stratégiques. Axe stratégique 1 : Définition des termes de référence de chaque formation sanitaire par rapport à la prise en charge de la tuberculose. Objectif spécifique 1.1 : Transformer les CDT intégrés dans les hôpitaux universitaires et les hôpitaux régionaux en centre de traitement temporaire. Objectif spécifique 1.2 : Impliquer toutes les formations sanitaires dans la prise en charge des tuberculeux. Axe stratégique 2 : Création d’un système officiel de « coaching » au sein des acteurs de terrain du PNT. Objectif spécifique 2.1 : Définir la place de chaque CDT à part entière suivant le système de coaching. Objectif spécifique 2.2 : Mettre en route le système de coaching. D’une manière pratique, les CDT ayant mis en œuvre au moins 7 initiatives et qui ont un taux d’abandon inférieur ou égal à 10% sont considérés comme des « coachs » et les autres CDT sont ceux à appuyer. Le prestataire de soins d’un CDT à appuyer va effectuer dans un premier temps un stage d’imprégnation dans un CDT « coach ». L’objectif est de vivre, de discuter et de comprendre les différentes initiatives propices menées dans le CDT « coach ». Au terme de son stage, le prestataire appuyé aura à définir les grandes lignes d’initiatives qui seraient favorables dans son contexte. Après ce stage d’imprégnation, le prestataire d’un CDT coach accompagne le prestataire appuyé dans son CDT afin d’analyser son contexte et de spécifier les initiatives à mettre en œuvre. Il est suggéré d’effectuer, après 6 ou 12 mois de la mise en œuvre, une mini-évaluation au travers des indicateurs de routine du contrôle de la tuberculose en général et particulièrement au travers du taux d’abandon au traitement. Conclusion La considération des contextes des malades par les responsables de terrains et les prestataires de soins, au travers de la prise d’initiatives propices, n’est pas du hasard. Elle a été conditionnée par la connaissance des réalités locales, des contextes des malades et les expériences de ces agents de terrain. Il est temps de conceptualiser et de publier autant que possible, ces initiatives propices afin d’améliorer davantage la lutte contre la tuberculose. L’objectif étant de partager les expériences des agents de terrain par la diffusion de leurs bonnes pratiques auprès des autres acteurs et de conscientiser les responsables nationaux et internationaux que l’application mécanique des directives, sans tenir compte les réalités de terrain, va à l’encontre du contrôle de la maladie. Une démarche simple étiquetée « Système de coaching » va certainement servir comme outil efficace de mise en œuvre des différents systèmes de prise en charge et de suivi des malades. Mais lors de la mise en œuvre des ces bonnes pratiques, la phrase de Kelly « Local problems, local solutions… » devrait être considérée comme balise. Car la bonne pratique dans une zone peut ne pas être toujours efficace dans d’autres zones. Dans ce cas, nous encourageons les managers de terrain et les prestataires de soins à analyser leurs contextes locaux et les réalités de leurs patients et d’apporter des solutions et des initiatives adéquates. Les décideurs et les responsables centraux devraient faciliter cette démarche de prise de décision par la création officielle d’une atmosphère d’échange d’expériences entres tous les acteurs. Executive summary. Introduction Tuberculosis is an infectious disease that causes a burden to society, and in this case, it is responsible for a substantial specific mortality rate, especially in developing countries. Despite excellent progress in terms of diagnosis, prevention and treatment methods, nearly 9 million new cases occur each year and 30% are in Africa. It is estimated that TB kills 2 million people a year, mostly among the poorest populations. However, the disease can be cured with drugs costing less than USD 18 per patient. To resolve the problem related to TB, WHO recommended in 1994 the implementation of the strategy of "Directly Observed Treatment Short-course (DOTS). This strategy consists of 5 key points, gave only partial results. Therefore, the WHO experts have designed and issued another strategy called "Stop TB" in 2006. This new strategy, going beyond the 5 main points of the DOTS strategy, called on all public and private health facilities and all health workers, including community health workers, to participate on TB screening and treatment. In Madagascar, the fight against TB is coordinated by the staff of National Tuberculosis Program (NTP). This program is operational since 1991 and applies the strategies recommended by WHO. In addition, it designed a manual, referring to these strategies and, for healthcare providers and program managers at the operational level. The main objectives of NTP were to improve the screening system and to cure 85% among those detected. In 2006, 15 years after the implementation of the program, the notification rate of new smear-positive (TPM +) was 81 per 100,000 inhabitants and the treatment success rate for this group of tuberculosis patients was still 78%. The lethality and treatment failure rate of treatment in Madagascar is relatively low. The relatively low percentage of treatment success, below the target, is primarily related to the high defaulting rate. Since 2006, the NTP adopted the decentralized system regarding patient care. Normally, a TB patient has a long and hard way to do from the first signs of TB until treatment success. This way is both geographic and therapeutic. Although patients have almost identical clinical signs requiring a standard treatment, they have different contexts. And each context has specific effect on treatment adherence. However, strategies designed at national and international levels consider rarely the local contexts. Note that Madagascar is a big country of 590,000 km² with different contexts across regions and districts (geographical, cultural context, many health facilities, etc.). The application of the guidelines without regard to these different contexts of patients is one of the causes of non successful TB control. Conversely, districts and centers for diagnosis and treatment (CDT) which adapt the guidelines to their contexts and / or take initiatives responding to the patient contexts have a greater chance of successful TB control. Objectives The thesis aims to: • Describe the fight against tuberculosis in Madagascar; • Identify coping mechanisms and local initiatives related to the performance of the NTP; • Propose a realistic strategy based on the results. Overall Methods To achieve the objectives, a series of 5 studies was conducted. Each of these 5 studies has its specific design. Generally, these studies used qualitative approaches and quantitative. And they led us to (i) interviewing TB patients and possibly a family member (ii) interviewing healthcare providers and PNT managers in different levels (iii) exploring TB patient files and reports at the NTP. The main indicators used by the NTP in the monitoring of patients treated are the treatment success rate including cure rate and treatment completion rate, the failure rate, the death rate and the defaulting rate. It found that successful treatment is affected by drug resistance and co-infection TB / HIV. So, we decided to take the defaulting rate as the main indicator to evaluate the performance of the monitoring system of TB patients treated. Specific methods and results The first 2 studies were retrospective studies aimed at understanding the fight against tuberculosis in Madagascar. The first study used patient files in the 3rd CDT of Antananarivo and the second study used all reports of patients across the country from 1996 to 2004. It was observed that the defaulting rate of tuberculosis treatment in Madagascar remained high since the implementation of the NTP in 1991 and the launching of the strategy DOTS in 1994. A slow decrease rate is found, about 4.5 points (21.0% - 16.5%) in 9 years (1996 to 2004). The 3rd study analyzed the relationship between the performance level of the NTP and organizational improvements in the care system of patients. A sample of 24 health districts supported at least 100 patients per year between 1996 and 2006 was included in this study. And it was observed that the NTP has made significant improvements on the organizational management of tuberculosis: improved coverage in CDT, training health workers on DOTS etc. Furthermore, the NTP has obtained financial and technical supports from international agencies, particularly WHO, the Global Fund and the French Cooperation. However, referring to the annual defaulting rate, the performance, of all the 24 districts involved the majority of TB patients, was not improved. Moreover, analysis by the district shows different levels of performance. The 4th study is a qualitative study which aims to identify adaptations of NTP guidelines and local initiatives taken by the NTP local managers and the healthcare providers in terms of patients monitoring. It was conducted among a sample of CDT from 6 districts and has identified a series of adjustments to the guidelines and local initiatives explaining the performance of CDT and districts. The main initiatives identified are (i) initiatives that strengthen the motivation of patients in treatment adherence as empowering patients and family members in treatment monitoring (II) initiatives to ensure better accessibility of care, such as creation of shelter (ii) initiatives improving the care quality, such as the recruitment of specific agent tuberculosis. The 5th study was conducted to test on all CDT Madagascar, performance factors identified in the 4th study. The response rate of this study was more than 80%. The analysis noted that during the period before decentralization, the defaulting rate was 16.8% (n = 35,090), he rose to 11.5% (n = 28,688) after decentralization. The public CDT and the CDT integrated in big hospitals have a higher defaulting rate compared to other CDT. The difference is significant regardless of the period. It was observed that performing CDT has made adjustments and took initiatives responding to the contexts of their patients. In addition, the number of initiatives increases the level of performance of the CDT. The main local initiatives associated with the performance of the CDT are: • The encouragement of patients to go to the CDT and to the laboratory when performing tests of sputum; • The distribution of drug in turn; • The presence of TB specific agent in CDT; • The mandatory presence of family members in education sessions; • The involvement of former patients in group education sessions and in the counseling of patients; • The involvement of NGOs in the management of patients; • The delivery of analysis results in a sealed envelope; • The achievement of at least 4 personal education sessions; • The achievement of regular group education; • The presence of patient shelter; • The involvement of community health workers in the care of patients. However, the level of association between these initiatives and the performance of the CDT depends on the characteristics of the CDT (Big hospital versus basic health education; CDT private versus CDT public). Furthermore, some initiatives taken by providers in specific contexts did not improve the adherence to treatment, but they led to higher defaulting rate. The authorization given to a family member to recover the drugs is associated with treatment non-adherence in private clinics and health facilities basic. The requirement for a certificate of residence of patients is associated with treatment default in big hospitals. Suggestions As good practices validated through a survey of more than 80% of CDT, the initiatives identified at the end of this thesis deserve to be available to field managers of the NTP and to the healthcare providers. However, they should not be copied directly. We suggest a practical approach to avoid the mechanical application of these initiatives. It is a “coaching strategy” and consists by 2 strategic focuses. Strategic focus 1: Definition of terms of reference of each facility regarding tuberculosis diagnosis and treatment. Specific Objective 1.1: To transform CDT integrated in university hospitals and regional hospitals in temporary treatment center. Specific objective 1.2: To involve all health facilities in the treatment of tuberculosis. Strategic focus 2: Creation a formal system of coaching in the health workers of the NTP. Specific objective 2.1: Set up each CDT full following the coaching system. Specific Objective 2.2: To launch the coaching system. Practically, the CDT has taken at least 7 initiatives and has had a defaulting rate less than 10% are considered as "coaches" and the other ones are considered as CDT to be supported. The healthcare provider of the support CDT will perform impregnation stage at a CDT "coach". The goal is to practice, to discuss and to understand the different initiatives undertaken at the CDT "coach". After his training, the support provider will have to outline initiatives that would undertake in its context. After this stage of impregnation, the coach accompanies the trained at its CDT in order to analyze its context and to specify the initiatives to implement. It is suggested to perform after 6 or 12 months of implementation, a mini-assessment through routing indicators. Conclusion The consideration of TB patient contexts by local managers and healthcare providers, through taking good initiatives, is not randomly. It was conditioned by the knowledge of local situations and local contexts and conditioned by the experiences of health worker. It is time to conceptualize and publish as much as possible, these good initiatives to further improve the fight against tuberculosis. The goal is to share experiences of health workers through the dissemination of their good practices with others and raise awareness among national and international managers that the mechanical application of the guidelines, ignoring the local realities, does not lead to better disease control. A simple strategy labeled "System Coaching" will certainly serve as an effective tool for implementation of patient care systems and patient monitoring. But during the implementation of those practices, Kelly phrase "Local problems, local solutions ..." should be regarded as the benchmark. Because, a good practice in one area may not always be effective in other areas. In this case, we encourage local managers and healthcare providers to analyze their local contexts and realities of their patients in order to provide solutions and appropriate initiatives. Stakeholders and central managers should facilitate their approach by establishing a formal atmosphere experience exchanges between all health workers in terms of control of TB.

A situação epidemiológica da tuberculose (TB) no âmbito mundial e no Brasil ainda evidencia importante magnitude, acrescentando-se o problema crescente da Tuberculose Multiresistente (TBMR), as quais apresentam associação com as desigualdades sociais. Com a finalidade de contribuir para o conhecimento a respeito da TBMR e aprimorar as práticas de controle da doença, o presente estudo teve como objetivos: descrever o perfil de características sócio-demográficas e clínico-epidemiológicas dos pacientes portadores de tuberculose multirresistente, inscritos em um Centro de Referência para a Tuberculose do Estado de São Paulo, no período de agosto de 2002 a dezembro de 2009; e identificar, na trajetória percorrida pelos portadores de TBMR, inscritos no ano de 2009, nessa Unidade de Saúde, desde a percepção dos primeiros sinais e sintomas da TB até a constatação da multirresistência, aspectos que podem estar associados à ocorrência da multirresistência. O perfil sócio-demográfico e clínico-epidemiológico teve abordagem quantitativa, é descritivo, retrospectivo e seccional; os dados utilizados foram secundários e obtidos de fichas de notificação do Sistema de Informação da TBMR (Sistema TBMR, de âmbito nacional) e de prontuários dos pacientes matriculados na Instituição onde foi realizado o estudo. Na segunda etapa, o estudo teve abordagem qualitativa, tendo os depoimentos de alguns portadores de TBMR como matéria prima para a apreensão e a análise de aspectos da vida dos enfermos. A primeira etapa teve como população de estudo 188 pacientes e, para a segunda etapa, foram realizadas 19 entrevistas, que foram analisadas segundo técnica de análise de discurso apropriada. Para ambas as etapas do estudo foram observados os aspectos éticos. Os dados foram coletados no período de 22 de fevereiro a 15 de junho de 2010. Os resultados da primeira etapa do estudo revelam que 93,1% dos pacientes encontravam-se na faixa etária produtiva, 64,4% eram homens, a maior parte (34,6%) tinha de quatro a sete anos de escolaridade, 61,6% apresentavam precária inserção no mercado de trabalho; 74,2% eram procedentes do Município de São Paulo, com história de tratamentos anteriores para a TB (98,9%), 22,9% apresentavam etilismo e 28,2% tabagismo. A segunda etapa do estudo mostra que alguns aspectos podem ter contribuído para o desenvolvimento da TBMR, sobretudo relacionados às condições de vida e trabalho dos acometidos, além do acesso aos serviços de saúde. Em geral, as trajetórias percorridas pela maior parte dos pacientes revelam demora na busca da assistência, na realização e obtenção do resultado de exames e no diagnóstico da enfermidade; carência de informações sobre a doença e sobre os serviços de saúde que oferecem assistência. Conclui-se sobre a necessidade de expandir as políticas públicas de controle da doença e de ampliar a acessibilidade dos pacientes à assistência adequada. / The epidemiological situation of tuberculosis (TB) worldwide and in Brazil still shows significant magnitude, adding to the growing problem of multi-resistant tuberculosis (MRTB), which are associated with social inequalities. In order to contribute to the knowledge of the MRTB and improve the practices of disease control, this study had as objectives: to describe the profile of socio-demographic and clinical-epidemiological characteristics of patients with multi-resistant tuberculosis, enrolled in a Reference Center for Tuberculosis of State of Sao Paulo, in the period from August 2002 to December 2009; and identify the path travelled by the patients with MRTB, enrolled in the year 2009, this Health Unit, from perception of early signs and symptoms of TB up to find the multi-resistance, aspects that may be associated with the occurrence of multi-resistance. The socio-demographic profile and clinical-epidemiological had a quantitative approach, is descriptive, retrospective and sectional; the data used were secondary and obtained from reporting forms of the Information System of MRTB (MRTB system, nationwide) and Medical records of patients enrolled in the Institution where the study was conducted. In the second step, the study had a qualitative approach, having the declaration of some patients with MRTB as raw material for the seizure and analysis of aspects of life of the sick people. The first step was to study a population of 188 patients and, for the second step, 19 interviews were conducted, was analyzed by the technique of discourse analysis. For both steps of the study, were observed the ethical aspects. Data were collected in the period from February 22 to June 15 of 2010. The results of the first step of the study show that 93.1% the patients were in the productive age group, 64.4% were men, most part (34.6%) had four to seven years of study, 61.6% showed precarious insertion in the labor market; (74.2%) was from municipality of São Paulo, with history of previous treatment for TB (98.9%), 22.9% showed alcoholism and 28.2% smoking. The second step of the study shows that some aspects may have contributed to the development of MRTB, mainly related to living conditions and the work involved, in addition to access to health services. In general, the path travelled by most patients shows delay in seeking assistance, in realization of exams and obtaining of results, and in diagnosis of disease; lack of information about the disease and about the health services that provide assistance. It is concluded about the need to expand public policies to control the disease and to expand the accessibility of patients to appropriate assistance.

Introdução: A situação epidemiológica da tuberculose (TB) no âmbito mundial e no Brasil ainda evidencia importante magnitude, acrescentandose o problema crescente da Tuberculose Multirresistente (TBMR). A TB é exemplo consagrado que evidencia as desigualdades sociais e as limitações de acesso à saúde. A adesão ao tratamento da TBMR é um dos aspectos cruciais do cotidiano da assistência em saúde e uma das maiores dificuldades no controle da enfermidade. Objetivos: Analisar como se processa a adesão ao tratamento para a TBMR, em um grupo de indivíduos que completaram com sucesso o tratamento medicamentoso; e propor alternativas para incrementar a adesão. Métodos: Estudo de abordagem qualitativa, desenvolvido em Centro de Referência para Controle da TB e TBMR do Estado de São Paulo, Brasil. Foram coletados, no período de abril a setembro de 2012, depoimentos de indivíduos que vivenciaram o adoecimento por TBMR e que aderiram ao tratamento medicamentoso até a alta por cura. Os depoimentos foram analisados segundo técnica de análise de discurso e interpretados à luz da Hermenêutica-Dialética e da Teoria da Determinação Social do Processo Saúde-Doença. Resultados: Entrevistouse 21 sujeitos, sendo: 17 (80,9%) pertencentes ao sexo masculino; 19 (90,4%) encontravam-se na faixa etária produtiva; 11 (52,4%) tinham 9 ou mais anos de escolaridade; 14 (66,7%) estavam afastados do trabalho ou desempregados durante o tratamento e relataram ter recebido auxílio, como vale transporte e cesta básica; 14 (66,7%) eram acompanhados pela Estratégia Saúde da Família; 18 (85,7%) tinham tratamento anterior para TB; 20 (95,2%) realizaram o tratamento da TBMR na modalidade Diretamente Observado, executado na Unidade Básica de Saúde (19: 95,0%); 16 (76,2%) caminhavam até o local para o Tratamento Diretamente Observado; sendo que 17 (80,9%) levavam até 30 minutos para o deslocamento; 16 (76,1%) realizaram o tratamento por 18 a 20 meses; 7 (33,6%) possuíam outra doença além da TBMR; 4 (40,0%) faziam uso de cigarro e nenhum sujeito fazia uso de álcool, durante o tratamento.Verificou-se que, como produto da forma como se realiza o trabalho e a vida, há uma variedade de questões que acabam por mediar o processo de adesão ao tratamento, que são determinadas por relações de interdependência e de subordinação. Fundamentalmente, a adesão ocorreu devido ao desejo de viver face à inevitabilidade da morte; ao suporte físico, emocional/psicológico e financeiro; e à forma como o serviço de saúde oferece o cuidado e se organiza para o tratamento medicamentoso. Conclusão: A adesão ao tratamento medicamentoso da TBMR não se reduz a um ato de vontade estritamente individual, mas depende da forma como se realiza a vida em sociedade e da acessibilidade aos serviços de saúde. Ressalta-se a necessidade de entender tais processos para apoiar a prática assistencial dos profissionais de saúde envolvidos no tratamento das pessoas com TBMR, em particular a Enfermagem, com vistas a fortalecer a adesão e apoiar as estratégias para o controle da TBMR. / Introduction: The epidemiological situation of Tuberculosis (TB) in the world, as well as in Brazil, shows an important magnitude, adding to the growing problem of Multidrug-Resistant Tuberculosis (MDR-TB). TB is an enshrined example highlighting the social inequalities and limited access to health care. Adherence to treatment of MDR-TB is a crucial aspect of everyday health care and one of the greatest difficulties in controlling the disease. Objetive: To analyze the adherence process to the treatment for MDR-TB in a group of individuals who have successfully completed drug treatment; and propose alternatives for increasing the treatment adherence for MDR-TB. Methods: A qualitative study, developed in a Reference Center for Tuberculosis Control and MDR-TB in the state of São Paulo, Brazil. During the period of April - September 2012, testimonials were collected from individuals who experienced MDR-TB and who adhered to drug treatment until discharge for being cured. The reports were analyzed according to discourse analysis technique and interpreted in the light of hermeneutics-dialectics and the Theory of Social Determination of the Health-Disease Process. Results: Twenty-one (21) subjects were interviewed, 17 (80.9%) were male; 19 (90.4%) were in the productive age group; 11 (52.4%) had 9 or more years of schooling; 14 (66.7%) were out of work or unemployed during treatment and reported receiving aid, such as transportation vouchers and food baskets; 14 (66.7%) were accompanied by the Family Health Strategy; 18 (85.7%) had previous treatment for TB; 20 (95.2%) underwent the treatment of MDR-TB in the form Directly Observed, performed in the Basic Health Care Unit 19: (95.0%); 16 (76.2%) walked to the location for the Directly Observed Treatment; and 17 (80.9%) took 30 minutes for the displacement; 16 (76.1%) underwent treatment for 18 to 20 months; 7 (33.6%) had diseases other than MDR-TB; 4 (40.0%) were tobacco smokers and no subject was using alcohol during treatment. It was found that, as a product of how the work is done and life, there are a variety of issues that ultimately mediate the adherence process to the treatment, which are determined by relations of interdependence and subordination. Fundamentally, the treatment adherence for MDR-TB was due to the desire to live, given the inevitability of death; physical support, emotional/psychological and financial; and how the health service offers care and is organized for medical treatment. Conclusion: Adherence to medication treatment of MDR-TB is not limited to a strictly individual act of will, but it depends on how one lives life in society and their access to health services. The need to understand these processes to support the care practice of health professionals, involved in the treatment of people with MDR-TB, needs to be emphasized, particularly in nursing, in order to strengthen the membership and support the strategies for the control of MDR-TB.

Introdução: A situação epidemiológica da tuberculose (TB) no âmbito mundial e no Brasil ainda evidencia importante magnitude, acrescentandose o problema crescente da Tuberculose Multirresistente (TBMR). A TB é exemplo consagrado que evidencia as desigualdades sociais e as limitações de acesso à saúde. A adesão ao tratamento da TBMR é um dos aspectos cruciais do cotidiano da assistência em saúde e uma das maiores dificuldades no controle da enfermidade. Objetivos: Analisar como se processa a adesão ao tratamento para a TBMR, em um grupo de indivíduos que completaram com sucesso o tratamento medicamentoso; e propor alternativas para incrementar a adesão. Métodos: Estudo de abordagem qualitativa, desenvolvido em Centro de Referência para Controle da TB e TBMR do Estado de São Paulo, Brasil. Foram coletados, no período de abril a setembro de 2012, depoimentos de indivíduos que vivenciaram o adoecimento por TBMR e que aderiram ao tratamento medicamentoso até a alta por cura. Os depoimentos foram analisados segundo técnica de análise de discurso e interpretados à luz da Hermenêutica-Dialética e da Teoria da Determinação Social do Processo Saúde-Doença. Resultados: Entrevistouse 21 sujeitos, sendo: 17 (80,9%) pertencentes ao sexo masculino; 19 (90,4%) encontravam-se na faixa etária produtiva; 11 (52,4%) tinham 9 ou mais anos de escolaridade; 14 (66,7%) estavam afastados do trabalho ou desempregados durante o tratamento e relataram ter recebido auxílio, como vale transporte e cesta básica; 14 (66,7%) eram acompanhados pela Estratégia Saúde da Família; 18 (85,7%) tinham tratamento anterior para TB; 20 (95,2%) realizaram o tratamento da TBMR na modalidade Diretamente Observado, executado na Unidade Básica de Saúde (19: 95,0%); 16 (76,2%) caminhavam até o local para o Tratamento Diretamente Observado; sendo que 17 (80,9%) levavam até 30 minutos para o deslocamento; 16 (76,1%) realizaram o tratamento por 18 a 20 meses; 7 (33,6%) possuíam outra doença além da TBMR; 4 (40,0%) faziam uso de cigarro e nenhum sujeito fazia uso de álcool, durante o tratamento.Verificou-se que, como produto da forma como se realiza o trabalho e a vida, há uma variedade de questões que acabam por mediar o processo de adesão ao tratamento, que são determinadas por relações de interdependência e de subordinação. Fundamentalmente, a adesão ocorreu devido ao desejo de viver face à inevitabilidade da morte; ao suporte físico, emocional/psicológico e financeiro; e à forma como o serviço de saúde oferece o cuidado e se organiza para o tratamento medicamentoso. Conclusão: A adesão ao tratamento medicamentoso da TBMR não se reduz a um ato de vontade estritamente individual, mas depende da forma como se realiza a vida em sociedade e da acessibilidade aos serviços de saúde. Ressalta-se a necessidade de entender tais processos para apoiar a prática assistencial dos profissionais de saúde envolvidos no tratamento das pessoas com TBMR, em particular a Enfermagem, com vistas a fortalecer a adesão e apoiar as estratégias para o controle da TBMR. / Introduction: The epidemiological situation of Tuberculosis (TB) in the world, as well as in Brazil, shows an important magnitude, adding to the growing problem of Multidrug-Resistant Tuberculosis (MDR-TB). TB is an enshrined example highlighting the social inequalities and limited access to health care. Adherence to treatment of MDR-TB is a crucial aspect of everyday health care and one of the greatest difficulties in controlling the disease. Objetive: To analyze the adherence process to the treatment for MDR-TB in a group of individuals who have successfully completed drug treatment; and propose alternatives for increasing the treatment adherence for MDR-TB. Methods: A qualitative study, developed in a Reference Center for Tuberculosis Control and MDR-TB in the state of São Paulo, Brazil. During the period of April - September 2012, testimonials were collected from individuals who experienced MDR-TB and who adhered to drug treatment until discharge for being cured. The reports were analyzed according to discourse analysis technique and interpreted in the light of hermeneutics-dialectics and the Theory of Social Determination of the Health-Disease Process. Results: Twenty-one (21) subjects were interviewed, 17 (80.9%) were male; 19 (90.4%) were in the productive age group; 11 (52.4%) had 9 or more years of schooling; 14 (66.7%) were out of work or unemployed during treatment and reported receiving aid, such as transportation vouchers and food baskets; 14 (66.7%) were accompanied by the Family Health Strategy; 18 (85.7%) had previous treatment for TB; 20 (95.2%) underwent the treatment of MDR-TB in the form Directly Observed, performed in the Basic Health Care Unit 19: (95.0%); 16 (76.2%) walked to the location for the Directly Observed Treatment; and 17 (80.9%) took 30 minutes for the displacement; 16 (76.1%) underwent treatment for 18 to 20 months; 7 (33.6%) had diseases other than MDR-TB; 4 (40.0%) were tobacco smokers and no subject was using alcohol during treatment. It was found that, as a product of how the work is done and life, there are a variety of issues that ultimately mediate the adherence process to the treatment, which are determined by relations of interdependence and subordination. Fundamentally, the treatment adherence for MDR-TB was due to the desire to live, given the inevitability of death; physical support, emotional/psychological and financial; and how the health service offers care and is organized for medical treatment. Conclusion: Adherence to medication treatment of MDR-TB is not limited to a strictly individual act of will, but it depends on how one lives life in society and their access to health services. The need to understand these processes to support the care practice of health professionals, involved in the treatment of people with MDR-TB, needs to be emphasized, particularly in nursing, in order to strengthen the membership and support the strategies for the control of MDR-TB.

Résumé exécutif.<p>Introduction.<p>La tuberculose est une maladie infectieuse qui constitue un fardeau pour la société et en ce sens qu’elle est responsable d’un important taux de mortalité spécifique, surtout dans les pays en développement. Malgré les grands progrès en termes de méthodes de diagnostic, de prévention et de traitement, près de 9 millions de nouveaux cas apparaissent chaque année au niveau mondial et les 30% se trouvent en Afrique. On estime que la tuberculose est responsable de près de 2 millions de morts par an, principalement parmi les populations les plus pauvres. Pourtant, la maladie peut être guérie à l’aide des médicaments dont le coût est inférieur à 18 USD par patient. <p>Pour faire face à ce problème lié à la tuberculose, l’OMS a recommandé vers 1994 l’application de la stratégie « Directly Observed Treatment Short-course, (DOTS) ». Cette stratégie, constituée de 5 points clés, n’a donné que des résultats partiels. Par conséquent, les experts de l’OMS ont conçu et ont publié une autre stratégie appelée « Halte à la Tuberculose » en 2006. Cette nouvelle stratégie, allant au delà des 5 principaux points de la stratégie DOTS, fait appel à toutes les structures sanitaires publiques et privées et à tous les acteurs de santé, y compris la communauté, pour participer au dépistage et à la prise en charge des tuberculeux.<p>A Madagascar, la lutte contre cette maladie est coordonnée par l’équipe du Programme national de lutte contre la tuberculose (PNT). Ce programme est fonctionnel depuis 1991 et applique les stratégies recommandées par l’OMS. Par ailleurs, il a conçu un manuel destiné aux prestataires de soins et aux différents responsables du niveau opérationnel. Le PNT s’est fixé comme principaux objectifs d’améliorer le système de dépistage et d’atteindre un taux de guérison de 85%. En 2006, 15 ans après la mise en œuvre du programme, le taux de notification des nouveaux cas de tuberculose à frottis positif (TPM+) était de 81 pour 100.000 habitants par an et la proportion de réussite au traitement pour ce dernier groupe de tuberculeux était encore de 78%. La létalité et le taux d’échec au traitement à Madagascar est relativement bas. La relativement faible proportion de réussite, inférieure à l’objectif, est avant tout liée au taux d’abandon élevé. Depuis 2006, le PNT a adopté le système décentralisé dans la prise en charge des malades. <p>Généralement, un tuberculeux a un parcours long et ardu à effectuer à partir de l’apparition des premiers signes d’imprégnation tuberculeuse jusqu’à la guérison. Ce parcours est à la fois d’ordre géographique et thérapeutique. Bien que les malades présentent des signes cliniques quasiment identiques, demandant un schéma thérapeutique standard, ils vivent dans des contextes différents. Et chaque contexte a un effet spécifique sur l’adhésion au traitement. Pourtant, ces contextes sont rarement considérés dans les stratégies conçues au niveau national et international. Soulignons que Madagascar est un vaste pays de 590.000 km² ayant des contextes (contexte géographique, contexte culturel, nombre de formations sanitaires, etc.) très variables d’une région à l’autre et d’un district à l’autre. L’application des directives sans tenir compte ces différents contextes locaux pourrait être à l’origine de la non réussite su système de suivi des malades et donc du contrôle de la tuberculose. Inversement, les districts et les centres de diagnostic et de traitement (CDT) qui adaptent les directives selon leurs contextes et/ou qui prennent des initiatives répondant aux contextes des malades, ont plus de chance de réussir le contrôle de la tuberculose.<p>Objectifs.<p>D’une manière spécifique, la présente thèse vise à :<p>-\ / Doctorat en Sciences médicales / info:eu-repo/semantics/nonPublished