Transitioning adolescents living with HIV/AIDS to adult-oriented health care: an emerging challenge

0021-7557/10/86-06/465 Jornal de Pediatria Review Article Copyright © 2010 by Sociedade Brasileira de Pediatria Transitioning adolescents living with HIV/AIDS to adult-oriented health care: an emerging challenge Daisy Maria Machado,1 Regina C. Succi,2 Egberto Ribeiro Turato3 Abstract Objective: To review the literature on transition from pediatric to adult-oriented health care and discuss this issue in the specific context of chronic conditions. Sources: MEDLINE and LILACS were searched for relevant English and French-language articles published between 1990 and 2010. Summary of the findings: The transition of adolescents with chronic diseases from pediatric care to adultoriented services has been a growing concern among pediatric specialties. In recent years, young people living with HIV/AIDS have begun to reach adulthood, giving rise to several challenges. The studies reviewed herein discuss such relevant topics as: the difference between transfer, an isolated event, and transition, a gradual process; the transition models used in different services; the importance of transitioning in a planned and individualized manner; the need for comprehensive interaction between pediatric and adult-oriented care teams; the importance of joint participation of adolescents, their families, and health professionals in the process; barriers to and factors that promote successful transitions; and the special needs of adolescents with HIV/AIDS in this important period of life. Conclusions: Several authors agree that transitioning adolescents to adult-oriented health care should be a gradual process not determined by age alone. It requires a plan established with ample dialogue among adolescents, their families, and pediatric and adult care teams. However, there is little evidence to support any specific model of health care transition. This should prompt researchers to conduct more prospective studies on the theme, especially in more vulnerable groups such as adolescents living with HIV/AIDS. J Pediatr (Rio J). 2010;86(6):465-472: HIV, adolescents, transition, chronic disease. Introduction Over the past few years, a noticeable change has taken population has shown that, as the HIV/AIDS wears on, place among children living with HIV due to mother-to-child the challenges faced by care providers and patients have transmission: this population is entering adolescence and also changed. If improvement of diagnostics, prevention, reaching adulthood.1 This scenario was made possible by the and therapy were the focus of attention in the early days advent of highly active antiretroviral therapy (HAART), which, of HIV/AIDS, other issues are now coming to the fore and alongside various prophylactic measures, has decreased becoming increasingly relevant. morbidity and mortality rates in this group.2-5 This new picture of HIV/AIDS as a chronic disease has In Brazil, 11,607 cases of childhood AIDS due to mother- given rise to a new topic of discussion among professionals to-child transmission were reported between the years of who care for this population: transitioning adolescents who 1980 and 2008.6 Clinical observation and follow-up of this were treated by pediatricians throughout their lives to 1. Professora afiliada, Disciplina de Infectologia Pediátrica, Departamento de Pediatria, Universidade Federal de São Paulo (UNIFESP), São Paulo, SP, Brazil. 2. Livre docente, Disciplina de Infectologia Pediátrica, Departamento de Pediatria, UNIFESP, São Paulo, SP, Brazil. 3. Livre docente, Departamento de Psicologia Médica e Psiquiatria, Faculdade de Ciências Médicas, Universidade Estadual de Campinas (UNICAMP), Campinas, SP, Brazil. No conflicts of interest declared concerning the publication of this article. Suggested citation: Machado DM, Succi RC, Turato ER. Transitioning adolescents living with HIV/AIDS to adult-oriented health care: an emerging challenge. J Pediatr (Rio J). 2010;86(6):465-472. Manuscript submitted Sep 14 2010, accepted for publication Sep 21 2010. doi:10.2223/JPED.2048 465 466 Jornal de Pediatria - Vol. 86, No. 6, 2010 Transitioning adolescents to adult health care - Machado DM et al. adult-oriented health care services. This transition has been after the young adult ceases mourning the loss of his or beset by challenges of various natures, such as structural her fluctuating adolescent identity, mood and affect become and organizational issues in health care services, social more constant, with remission of the so-called “syndrome issues, and issues associated with the psychological and of normal adolescence.”11 It is thus a complex process that cultural sense and significance of transitioning from youth calls for constant adjustment on several dimensions.12,13 to adulthood. Many of these adolescents will explicitly refuse One definition of transition often used in the literature this change; others will not provide any immediate verbal is that proposed by the Society for Adolescent Medicine,14 manifestations of their struggle, but display it by failing to which regards transitioning as a deliberate, planned process attend appointments or visits at the facility to which they that addresses the medical, psychosocial, vocational, and were referred, thus discontinuing treatment and follow-up. educational needs of adolescents and young adults with Care providers also face objections to this topic, which are chronic conditions when moving from a pediatric service to compounded by the scarcity of literature on the theme adult-oriented care. This transition should be recognized as focusing on the HIV/AIDS epidemic – a research gap that is merely one part of the broader set of educational, personal, made even more evident by a search for qualitative scholarly family-related, and social transitions that adolescents investigations of this phenomenon. The development of a experience. transition clinic is thus one of many current challenges in caring for this group of patients. The World Health Organization defines adolescence from age 10 to 19 (starting at the onset of puberty).15 The literature shows that this concern is not restricted Although 18 is the legal age of majority in most countries, to care of patients with AIDS, but is in fact evident in reaching this age does not mean automatic acquisition of several areas of pediatrics that deal with potentially chronic adult behavior, nor does it mark a watershed moment at conditions.7-10 which the turbulence of adolescence simply disappears. The The objective of this study was to review the topic of age at which adolescent patients usually transition to the transition, with a particular focus on adolescents living with adult clinic therefore coincides with the period of life during HIV/AIDS, through a review of the available literature on the which at-risk behaviors are at their peak.16 theme. LILACS and MEDLINE searches were conducted using Moving from care and mo (...truncated)