City tuberculosis control coordinators perspectives of patient adherence to DOT in São Paulo State, Brazil, 2005

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1 INT J TUBERC LUNG DIS 12(5): The Union City tuberculosis control coordinators perspectives of patient adherence to DOT in São Paulo State, Brazil, 2005 R. A. Arcêncio,* M. F. Oliveira,* R. I. Cardozo-Gonzales, A. Ruffino-Netto, I. C. Pinto,* T. C. S. Villa* * College of Nursing, University of São Paulo at Ribeirão Preto, São Paulo, Brazilian TB Research Network REDE-TB, Ribeirão Preto, São Paulo, School of Medicine, University of São Paulo at Ribeirão Preto, São Paulo, Brazil SUMMARY SETTING: Thirty-six priority cities in São Paulo State, Brazil, with a high incidence of tuberculosis (TB) cases, deaths and treatment default. OBJECTIVE: To identify the perspectives of city TB control coordinators regarding the most important components of adherence strategies adopted by health care teams to ensure patient adherence in 36 priority cities in the State of São Paulo, Brazil. DESIGN: Qualitative research with semi-structured interviews conducted with the coordinators of the National TB Control Programme involved in the management of TB treatment services in the public sector. RESULTS: The main issues thought to influence adherence to directly observed treatment (DOT) by coordinators include incentives and benefits delivered to patients, patient-health care worker bonding and comprehensive care, the encouragement given by others to follow treatment (family, neighbours and health professionals), and help provided by health professionals for patients to recover their self-esteem. CONCLUSION: The main aspects mentioned by city TB control coordinators regarding patient adherence to treatment and to DOT in São Paulo are improvements in communications, relationships based on trust, a humane approach and including the patients in the decisionmaking process concerning their health. KEY WORDS: DOT; tuberculosis; health planning; patient adherence; bonding DUE TO THE RECRUDESCENCE of tuberculosis (TB) in the 1990s, particularly in industrialised countries, the DOTS strategy was proposed, which consists of the following five components: 1) government commitment to including TB in the agenda, 2) a national network of laboratories for diagnosis, 3) directly observed treatment (DOT), 4) a regular, uninterrupted supply of medications and 5) an appropriate recording and reporting system for monitoring TB cases. 1 DOT, which consists of a patient s medication intake being supervised by another person, was officially implemented in Brazil in One critical issue concerning DOT is whether supervision of drug intake ensures treatment adherence. 2 Studies have shown that treatment adherence is related more to interventions during the implementation of DOT than to medical supervision. Such interventions include health education, social support, assistance to the homeless, drug users and the mentally ill, sensitivity to patient needs, provision of food coupons and free transportation. 3 The discussion about TB treatment thus extends beyond the strictly medical aspects of the disease. Recent studies conducted in Brazil confirm that certain factors such as levels of education, low socioeconomic status, an informal work market and unsanitary living conditions are related to lower treatment adherence. Health care professionals therefore need to address various areas of TB patients lives. In addition to caring for the disease, such as checking on improvement after the start of treatment and routine follow-up examinations, interventions should also include actions dealing with social issues that contribute to illness. 4 6 Studies performed in Pakistan, 7 Nepal 8 and Brazil 6 show that there is a relationship between DOT adherence and the attention paid to patients and their needs. The present study aimed to identify the perspectives of city control coordinators regarding the most important components of the treatment adherence strategies adopted by health care teams to improve patient adherence in 36 priority cities in the State of São Paulo, Brazil. One of the important aspects in the study was the inclusion of National TB Control Programme (NTP) coordinators who were able to present their personal experience of treatment adherence. This helped to identify ways of overcoming obstacles to treatment adherence associated with patient behaviour and thereby improve the organisation of the public health services. Despite the national policy to adopt DOT, there are no central guidelines in the State of São Paulo as to Correspondence to: Tereza C S Villa, College of Nursing at Ribeirão Preto, University of São Paulo, Bandeirantes Avenue 3900, Campus Universitário, Ribeirão Preto, São Paulo, Brazil. Tel: ( 55) Fax: ( 55) tite@eerp.usp.br Article submitted 20 December Final version accepted 21 December 2007.

2 528 The International Journal of Tuberculosis and Lung Disease how the strategy should be implemented. Each city therefore has its own experiences of developing DOT and adapting it to local human and material resources. SETTING Situated in the south-east of Brazil, the state of São Paulo is one of the largest industrial and agricultural centres in Latin America. With a population of and a density of inhabitants/km 2 (compared to a national average of 20 people/km 2 ), most of Brazil s TB cases are notified in São Paulo State. In 2004, cases were reported and there was a mortality rate of 4 cases per population. 9 The treatment recommended for newly diagnosed TB patients is a combination of rifampicin (RMP), pyrazinamide (PZA) and isoniazid (INH) during the first 2 months, followed by RMP and INH for 4 months. 10 METHODS São Paulo was chosen for this qualitative research because it has the highest number of TB cases and the highest death and default rates in the country. 11 In the Figure, the number of patients treated using DOT divided by the number of people diagnosed with TB in 2004 is shown by city in São Paulo State. This project is part of the national effort of a research group formed by academics, the city administration and health service researchers, with the aim of evaluating the use of DOT in Brazil, as few studies have been published on this subject in Brazil. 12 Data collection Data were collected using semi-structured interviews based on the following guiding questions: 1) What is meant by DOT? 2) What criteria are used to put a patient on DOT? 3) How is treatment supervision performed? and 4) What strategies are used to ensure patient adherence to DOT? These questions cover the most important factors related to DOT adherence and its role. Semi-structured interviews were conducted in July 2005 at the quarterly meeting of the NTP State Coordination held in three regional health centres. Twenty-two coordinators participated in the study. Criteria for participation were that the person should be working within the NTP at the time of the interview and had participated in DOTS implementation. Theoretical framework The framework used for the analysis consisted of the level of quality of the health care provided (structure, process and outcome), 13 and focused on the procedures used and the performance of the health care services, i.e., what was done and how the patient was treated. The procedure comprises the care offered to and received by the patient, in which key elements were identified, including the clinical care provided and the interaction between patient and health care professional. 14 Clinical care refers to care given according to a mainly biomedical model regarding the practice proposed to the health care teams according to the guidelines used for following and monitoring TB patients. Data treatment and analysis Interviews were transcribed verbatim. To analyse the data, interview texts were read and reread until the categories that best indicated what the informants were saying were identified. In the next phase, when inferences and interpretations were made, two lines of discussion were constructed. This paper addresses the Figure Coverage of supervised treatment in 36 priority cities in the State of São Paulo, Source: São Paulo State Health Secretary (2004).

3 Coordinators perspectives of adherence to DOT 529 strategies used by the health care team to ensure patient adherence to DOT. Ethical aspects of the research The research subjects were guaranteed anonymity; any decision on their part to refuse participation was respected, in accordance with the Free and Informed Consent Term, Resolution 196/96, of the Brazilian Health Ministry and the Ethics Code. The coordinators were identified by the letter E, followed by the order in which they were interviewed (e.g., E.2). RESULTS Of the 22 participants, 15 were women (68%) and seven were men (32%). Seventeen subjects (80%) had been coordinators for 5 years and had participated in DOTS implementation in their respective cities. Responses centred on the importance of patients understanding within the context of social vulnerability, and the interactions between patients and health care professionals. Such interactions are related to the bond between the patient and the health care worker and the comprehensive care provided, which involves not only medical aspects but also socio-economic factors. Tuberculosis... is a disease that is associated with social factors, so... it s important to improve the patients life conditions, so they have a better chance of being cured... (E.10) One element presented by the coordinators as facilitating treatment adherence was the delivery of incentives and benefits (food baskets, food coupons, dairy drinks and others).... And now we are receiving food baskets that are used to improve adherence... (E.7) Helping patients return to work and school is another intervention stated to be necessary to ensure adherence. This is especially true in that such interventions help patients recover the will to live and thus reconstruct their lives. Would you [patient] be interested in house cleaning?... (E.14) There was a young man who wished to at least be able to write his own name, and now he s in school... It s not just about the disease, it s everything... (E.14) New professionals must be very sensitive about a patient with tuberculosis, see the patient as a whole. Also, they must try to know what to do to make that patient want to achieve cure... (E.16) The patient s ability to recover self-esteem is cited as an element contributing to treatment adherence: One patient had [low] self-esteem; [health care professionals] took him for dental treatment. The moment he saw his mouth looked nice, he started shaving,... and taking his TB treatment... (E.16) Another factor that contributes to treatment adherence is the priority in the patient s life of achieving cure. Sometimes there are so many problems that health comes last. There are sometimes patients who live in such poverty that for them dying of tuberculosis is not an issue... (E.16) One crucial element that contributes to adherence is the encouragement given by others to continue their treatment. A nursing aide tried to contact a certain patient in many different places,... she went to the place and left a note saying she was worried..., and that she would like him to go to the Health Centre. When he got that note, he... came to us, and that patient achieved cure..., he felt extremely valued... (E.16) Treatment adherence is also aided by listening. Patients can talk with the DOT team, in an open, equal and democratic environment, constructed by dialogue, in a relationship that values the problems presented by the patient. The patient tried to follow the treatment three times, but it never worked. Now it s the fourth time, and it s working out and... maybe because we [team] did not listen as we should have listened... (E.14) DISCUSSION The delivery of benefits is considered a positive aspect of DOT as they attenuate side effects. However, some studies report that patients do not consider such benefits as definers of adherence. Rather, patients believe that achieving cure and recovering full health surpasses any such benefits. 4,6 Many patients interpret the improvements they feel early in treatment as the TB being brought under control. Patients therefore report, among other feelings, paying more attention to personal hygiene and being more optimistic when looking for a job, which provides the necessary autonomy for patients to survive and get on with their lives. 6 However, to reach this goal, health care professionals should be sensitive to patients needs, through a process of progressive involvement that consists of supporting, listening and making eye contact with patients. In other words, it means stopping whatever one is doing to examine the patient, checking for any problems, motivating, and, above all, treating the patients as unique individuals. 6 DOT is therefore perceived as a strategy that makes TB health care services more welcoming. It is a strategy that requires different approaches depending on each subject s specific situation. In addition, it offers incentives and employs workers who care for their patients, offering counselling when necessary. This requires creating a bond between patients and health care providers. With this approach, patients are always

4 530 The International Journal of Tuberculosis and Lung Disease the priority. When a health care provider is involved in another activity, that activity is considered secondary. 6 The frequent contact imposed by the DOTS strategy 4,15 on patients and health care professionals should be taken into consideration, as it allows for bonding. 6 Such a relationship is considered essential for adherence, because it demands tolerance regarding differences, and requires the health care provider to be sensitive to the patients situation, with the aim of developing integral, humanised care. 6 Sensitivity to the complex life situations of TB patients allows biological, social and psychological aspects to be addressed. As a chronic condition, TB treatment involves a minimum of 6 months of interaction with a patient. It therefore requires considerable effort on the part of professionals to resolve and eliminate possible problems that may interfere with treatment adherence. 4 It should also be observed that tiredness, lack of motivation and inadequate training among health care professionals may be fatal to success. 6 Patients also abandon TB treatment when they face a moment in life in which they become depressed and have low self-esteem. This state makes patients resign themselves to the condition of being ill. Such a state of mental distress is intrinsic to the patient and requires support from the health care professional. It was observed that such patients generally present distress as early as their childhood, resulting in lack of self care. 6 In this study, dental problems in one patient generated low self-esteem. During the DOT supervision process, this problem was identified by the supervisor in time to avoid treatment default. Homeless patients become involved in interaction with health care providers as a type of family. Patients therefore feel encouraged to continue treatment as a rare routine process in their lives. 6 Communication problems between health care professionals and patients are significantly associated with non-adherence to treatment. In the absence of adequate information, doubts about the disease, treatment duration and possible side-effects can remain unresolved. 8 The main item among the positive aspects of treatment adherence and DOT is the bond established between patients and health care professionals during the process of health promotion. Such bonds allow for inclusive and emancipatory care, by valuing people and their lives. The focus is not on the disease or on reaching a certain treatment goal, but rather on the quality of the interaction established between patients and health care professionals, which is more accurate in determining factors contributing to or impeding treatment adherence. The continued problem of TB, which fatally affects a large part of the Brazilian population, is a result not only of the non-implementation of public policies, but also of micro factors, such as the interaction between TB patients and health care professionals. If such relationships are purely impersonal, focusing exclusively on the object, with no bonds created, patients will eventually default from treatment. Patients may thus be traumatised not only by the disease but also by the impersonal nature of the health care system. In such settings, patients are transformed into numbers and goals, and their personal situation and needs are not taken into consideration. It is worth noting that the evaluation of the TB health care services in the country is based mainly on the goals reached by the programme (cure, treatment success, default and death), and not by the quality of the care delivered to patients. This type of organisational rationale is not capable of identifying nonadherence early in the interpersonal relationship. Such factors are identified only when the patient has already defaulted from treatment, when it is too late to prevent defaulting. CONCLUSION This study underlines the importance within the health care process of interaction between patients and health care professionals. To ensure patient adherence to TB treatment and DOT, according to the coordinators, interaction should include social and psychological management, improvements in communication, trust-based relationships, a humane approach, and inclusion of the patient in the decision-making process concerning his/her health. References 1 World Health Organization. What is DOTS? A guide to understanding the WHO-recommended TB control strategy known as DOTS. WHO/CDS/CPC/TB/ Geneva, Switzerland: WHO, Volmink J, Garner P. Directly observed therapy. Lancet 1997; 350: Volmink J, Matchaba P, Garner P. Directly observed therapy and treatment adherence. Lancet 2000; 355: Secretaria Estadual de Saúde, São Paulo. Tuberculosis control program and implementation of directly observed therapy. Municipality of Jacareí, São Paulo, Brazil. Rev Saude Publica 2004; 38: Bertolozzi M R. A adesão ao tratamento da tuberculose na perspectiva da estratégia do Tratamento Diretamente Observado (DOTS) no Município de São Paulo SP [thesis]. São Paulo, Brazil: Universidade de São Paulo, Escola de Enfermagem, [Brazilian] 6 Vendramini S H F, Villa T C S, Palha P F, Monroe A A. Tratamento supervisionado no controle da tuberculose em uma unidade de saúde de Ribeirão Preto: a percepção do doente. Bol Campanha Nac Tuberc 2002; 10: [Brazilian] 7 Khan M A, Walley J D, Witter S N, Sha S K, Javeed S. Tuberculosis patient adherence to direct observation: results of a social study in Pakistan. Health Policy Plan 2005; 20: Mishra P, Hansen E H, Svend S, Kafle K K. Adherence is associated with quality of professional-patient interaction in directly observed treatment short-course, DOTS. Patient Educ Couns 2005; 2544: Ministério da Saúde, Brasil. Sistema de Informação de Agravos de Notificação. Brasília, Brazil: Ministério da Saúde. www. datasus.gov.br Accessed November [Brazilian]

5 Coordinators perspectives of adherence to DOT Coordenação Nacional de Pneumologia Sanitária, Centro Nacional de Epidemiologia, Fundação Nacional de Saúde, Ministério da Saúde, Brasil. Plano nacional de controle da tuberculose. Brasília, Brazil: Ministério da Saúde, [Brazilian] 11 Coordenação Nacional de Pneumologia Sanitária, Centro Nacional de Epidemiologia, Fundação Nacional de Saúde, Ministério da Saúde, Brasil. Programa de controle da tuberculose: diretrizes do plano de ação emergencial para municípios prioritários. Brasília, Brazil: Ministério da Saúde, [Brazilian] 12 Ruffino Netto A, Villa T C S. Tuberculose: implantação do DOTS em algumas regiões do Brasil: histórico e peculiaridades regionais. Ribeirão Preto, Brazil: FMRP/REDE-TB, [Brazilian] 13 Donabedian A. The Lichfield lecture. Quality assurance in health care: consumer s role. Qual Health Care 1992; 1: Campbell S M, Roland M O, Buetow S A. Defining quality of care. Soc Sci Med 2000; 51: Bergel F S, Gouveia N. Frequent return as a novel strategy for tuberculosis treatment adherence. Rev Saúde Pública 2005; 39: RÉSUMÉ CONTEXTE : Trente-six villes prioritaires dans l Etat de São-Paulo, Brésil où l incidence des cas, des décès et des abandons de tuberculose (TB) est élevée. OBJECTIF : Identifier les perspectives des coordinateurs de lutte contre la TB dans les villes au sujet des composantes les plus importantes des stratégies d adhésion thérapeutique adoptées par les équipes de soins de santé en vue d obtenir l adhésion des patients dans 36 villes prioritaires de l Etat de São-Paulo, Brésil. SCHÉMA : On a mené une recherche qualitative au moyen d interviews semi-structurées avec des coordinateurs du Programme de Lutte contre la Tuberculose qui étaient impliqués dans la prise en charge des services de traitement TB du secteur public. RÉSULTATS : Les problèmes principaux que les coordinateurs perçoivent comme influençant l adhésion au DOT incluent les incitants et les avantages attribués aux patients, l attribution de soins obligatoires et complets, l encouragement à suivre le traitement provenant d autres (comme la famille, les voisins et les professionnels de la santé), et enfin l aide des professionnels de la santé pour soutenir les patients à retrouver leur estime d eux-mêmes. CONCLUSION : Les perspectives des coordinateurs de lutte contre la tuberculose dans les villes concernant l adhésion des patients au traitement et au DOT à São-Paulo sont l amélioration de la communication, relations de confiance, humanisation et inclusion du patient dans le processus de prise de décisions concernant sa santé. RESUMEN MARCO DE REFERENCIA : Treinta y seis ciudades prioritarias en el estado de São Paulo en Brasil, con una alta incidencia de casos y fallecimientos por tuberculosis (TB) y abandonos terapéuticos. OBJETIVO : Determinar las perspectivas de los coordinadores del control de TB en las ciudades, con respecto a las principales estrategias de cumplimiento terapéutico adoptadas por los equipos de atención de salud en 36 ciudades prioritarias del estado de São Paulo, en Brasil. MÉTODOS : Se llevó a cabo una investigación cualitativa con entrevistas semiestructuradas a los coordinadores del programa de TB implicados en la gestión de los servicios de tratamiento de TB del sector público. RESULTADOS : Los principales factores que influyen sobre cumplimiento terapéutico con el tratamiento corto directamente observado (DOT), según los coordinadores del programa, comprenden los incentivos y facilitadores suministrados a los pacientes, el vínculo y la provisión de una atención integral, el estímulo a continuar el tratamiento administrado por otras personas (familiares, vecinos y profesionales de la salud) y la ayuda del profesional sanitario al paciente en la recuperación de su autoestima. CONCLUSIÓN : Las perspectivas de los coordinadores del control de la TB en las ciudades con respecto al cumplimiento de los pacientes con el tratamiento y con el DOT en São Paulo son mejorar la comunicación, fomentar la confianza en las relaciones, humanizar la atención y vincular al paciente en la toma de decisiones que conciernen a su salud.