Ethical Reflection on Treatment Abandonment of Pediatric Cancer / 中国医学伦理学

About 80％ of children with malignant cancer in developed countries could be cured, while the sur-vival rate in developing countries that account for 80％ of the cases was lower than that of the developed countries. Treatment abandonment is the primary cause leading to the therapeutic failure and mortality in developing coun-tries. This paper discussed the current situation of treatment abandonment of pediatric cancer, the ethical issues and put forward the corresponding solutions, in order to attract more attention of scholars and take corresponding measures, thus to help improve the prognosis of pediatric cancer.

Frecuencia de abandono del tratamiento en pacientes pediátricos con leucemia linfoblástica aguda / Treatment abandonment in pediatric patients with acute lymphoblastic leukemia

Introducción. El abandono constituye el extremo del espectro de incumplimiento del tratamiento. En niños con cáncer, cualquiera que sea la causa que lleve a interrumpir el tratamiento, conduce a la progresión de la enfermedad, a recaídas o a la muerte. Por lo anterior, el propósito de este estudio fue conocer la frecuencia de abandono del tratamiento en pacientes pediátricos con leucemia linfoblástica aguda a nivel internacional, y antes y después de la implementación del Seguro Popular en México. Métodos. Se llevaron a cabo una revisión sistemática de la literatura sobre la frecuencia de abandono y un estudio de cohorte retrospectiva de expedientes de pacientes diagnosticados durante dos periodos de tiempo (2001-2003 y 2007-2009) en siete entidades de la República Mexicana. Resultados. La revisión de la literatura mostró que el abandono del tratamiento en pacientes pediátricos con leucemia linfoblástica aguda se circunscribe a los países en vías de desarrollo, con una tasa promedio de abandono de 24% -que puede llegar a ser hasta de 64%- con tendencia a disminuir con el tiempo. La frecuencia de abandono previa al Seguro Popular fue de 21.4%, en contraste con el 13.3% posterior a su implementación. Durante las fases tempranas de tratamiento y en los estados de Hidalgo y Puebla se registró el mayor porcentaje de abandono del tratamiento. Conclusiones. Es posible que, en comparación con lo que sucede en otras partes del mundo, la menor tasa de abandono al tratamiento de niños con leucemia linfoblástica aguda afiliados al Seguro Popular se deba a los apoyos sociales y económicos relacionados con el programa. Sin embargo, la frecuencia de abandono continua siendo alta por lo que se requiere de otras acciones para mejorar este problema.

Background. Abandonment is at the end of the spectrum of noncompliance. In children with cancer, whatever the cause that leads to treatment abandonment results in disease progression, recurrence and death. Therefore, the purpose of this study was to determine the frequency of treatment abandonment in pediatric patients with acute lymphoblastic leukemia (ALL) affiliated with the Seguro Popular insurance program. Methods. We conducted a systemaic review of the literature on the frequency of abandonment and a retrospective cohort study of clinical files of patients diagnosed during 2001 to 2003 and 2007 to 2009 in seven Mexican states. Results. A review of the literature shows that, among pediatric patients with ALL, treatment abandonment is seen almost only in developing countries and the documented rates may be as high as 64%, but with a diminishing tendency. The abandonment rate for children affiliated with the Seguro Popular insurance program was 13.3% during 2007 to 2009. In contrast, there was a rate of 21.4% of patients who abandoned before their implementation. The highest rates of treatment abandonment were observed during early treatment stages and were seen in hospitals from the states of Hidalgo and Puebla. Conclusions. In comparison to other countries, a lower rate of treatment abandonment has been seen in pediatric patients with ALL affiliated with the Seguro Popular insurance program. This observation would be related to the social and economic support provided by this program; however, the rate of abandonment is still high, making it necessary to introduce additional actions in order to improve this issue.

O abandono do tratamento da tuberculose sob a perspectiva dos gerentes de diferentes centros de saúde de Belo Horizonte-MG, Brasil / Abandonment of tuberculosis treatment in the perspective of health centers managers in Belo Horizonte-MG, Brazil / El abandono del tratamiento de tuberculosis en la perspectiva de directores de centros de salud de Belo Horizonte-MG, Brasil

O Programa Nacional de Controle da Tuberculose requer a organização e adequado funcionamento dos serviços de saúde para o cumprimento do princípio de integralidade do Sistema Único de Saúde, um dos pilares para o controle da doença. Este estudo qualitativo objetivou investigar, sob a perspectiva de gerentes de Centros de Saúde de Belo Horizonte-Minas Gerais, aspectos relativos ao funcionamento dos serviços que coordenam face ao abandono do tratamento da tuberculose e a viabilidade de cumprir as diretrizes do Programa de Controle da doença. Os dados foram coletados através de entrevistas semiestruturadas e interpretados pela Análise Temática de Conteúdo. Os relatos indicam que os serviços ainda não cumprem a perspectiva da integralidade, requerendo melhor organização e processos de educação permanente das equipes para enfrentar o abandono e elaborar novas alternativas para ampliar a adesão e conclusão do tratamento.

The Brazilian National Tuberculosis Control Program requires the organization and proper functioning of health services to meet the principle of intregality, one of the pillars of the Brazilian Unified Health System and the most important orientation for tuberculosis control. This study aims to investigate, in the perspective of nine managers of health centers in Belo Horizonte, MG, Brazil, aspects concerning the functioning of the services they coordinated, associated to noncompliance with tuberculosis treatment and the feasibility of meeting Program guidelines. Data were collected through semi-structured interviews and interpreted by means of thematic content analysis. Reports indicate that health services did not comply with the integrality orientation, requiring better organization and continuing education processes of health professionals to deal with abandonment and to develop new alternatives to improve treatment adherence and compliance.

El Programa Nacional de Control de la Tuberculosis en Brasil requiere la organización y funcionamiento de los servicios de salud para cumplir con el principio de la integralidad del Sistema Único de Salud, uno de los pilares para el control de la enfermedad. Este estudio tuvo como objetivo investigar desde la perspectiva de nueve administradores de centros de salud en Belo Horizonte, Minas Gerais, Brasil los aspectos relativos al funcionamiento de los servicios que coordinan asociados con el abandono del tratamiento de la tuberculosis y la viabilidad para cumplir con las directrices del Programa. Los datos fueron recolectados a través de entrevistas semi-estructuradas e interpretados por análisis de contenido temático. Los informes indican que los servicios no cumplen con la perspectiva de la integralidad y requieren una mejor organización así como de procesos de formación permanente de profesionales de la salud para hacer frente al abandono y desarrollar nuevas alternativas para aumentar la adherencia y la finalización del tratamiento.

Caracterização de pessoas com HIV/aids em abandono do tratamento antirretroviral e a busca consentida de casos / Characterization of subjects with HIV/AIDS that abandoned antiretroviral treatment and the method of consented search

Objetivo. Identificar, caracterizar e realizar busca de casos de abandono do tratamento antirretroviral entre pessoas HIV-positivas em acompanhamento no Hospital Universitário de Brasília. Método. Estudo descritivo, de corte transversal. A identificação de casos de abandono foi feita com base em listagem da farmácia de dispensação de medicamentos, pelo critério de pelo menos noventa dias sem retirada dos medicamentos. Realizou-se análise documental mediante registros obtidos nos prontuários e em formulários psicossociais dos pacientes listados. As estratégias de busca incluíram contato telefônico e envio de carta, e pautaram-se em preceitos éticos resguardando-se o sigilo e o respeito aos direitos do usuário. A análise documental passou portratamento estatístico descritivo. Resultados. Foram analisados 28 prontuários, e dezessete foram de mulheres (60,7%). As idades variaram de 26 a 66 anos e 60,7% estavam desempregados. Mais da metade tinha interrompido o tratamento. Entre os motivos que podem ter interferido na situação de abandono do tratamento foram identificados, em maior frequência, abuso de álcool e outras drogas e precariedade do apoio sociofamiliar. Quatro usuários foram contatados e reacolhidos.Conclusões. O estudo tem relevância porque o abandono do tratamento é realidade nos serviços de saúde. Conclui-se que a busca consentida é estratégia válida para o reacolhimento do usuário, ao lado de intervenções para manejo de fatores que possam levar ao abandono do tratamento. Para tanto, as equipes de saúde precisam capacitar-se para buscar de forma consentida, reacolher e intervir em favorecimento da adesão.

Objective. To identify, characterize and start the search of cases of HIV/AIDS patients who abandoned the antiretroviral treatment at the University Hospital of Brasilia. Method. Descriptive study, cross-sectional. The identification of cases of abandonment was made based ona list of pharmacy dispensing antiretroviral drugs, the criterion of at least 90 days without attending for the drug controlled delivery. Their medical records and psychosocial reports, kept by University Hospital of Brasília, were analysed. The search strategies included telephone contact and sending a letter, and were based on ethic principles that guaranteed and respected the patients? rights. Results. 28 medical records were analysed. Seventeen patients were women (60.7%), aged between 26 and66 years, 60.7% were unemployed. More than half had stopped treatment earlier. Among the reasons that may have influenced this situation of noncompliance, some most frequently identified were: abuse of alcohol and other drugs, side effects of antiretroviral drugs and precariousness of the social and family support. Four patients were contactedand treated. Conclusions. The present study is relevant as the discontinuity of treatment is a frequent situation in healthservices. This study concludes that the consented search is a valid strategy for the restablishment of the therapy, along with interventions for the management of factors that may lead to noncompliance. For such purpose, health services require to be trained in order to perform consented search, regroup with the subject and intervene so as toincrease treatment adherence.

Understanding Refusal and Abandonment in the Treatment of Childhood Cancer.

Treatment refusal and abandonment is the principal cause of therapy failure in children with cancer in the developing world. A complex interplay of biological, socio-economic and treatment-related factors underlies this problem. Interventions are likely to succeed when they try and address all of these issues simultaneously, as exemplified by the success of twinning programs linking resource-rich and resource-limited countries. Hitherto, there has been no systematic attempt to understand and address this problem in India. Based on the knowledge gained from research in other parts of the developing world, we offer suggestions for dealing with this problem.