INTRODUÇÃO: Crianças com infecção por HIV por transmissão perinatal ou adquirida nos anos 1980 e 90 começaram a ser transferidas da pediatria para ambulatórios especializados no cuidado de adultos ao final da primeira década dos anos 2000. A transição entre esses serviços para jovens com outras doenças crônicas é um momento crítico que pode estar associado a maior número de intercorrências clínicas, mas pouco há descrito sobre desfechos clínicos desfavoráveis nos pacientes infectados pelo HIV. MÉTODOS: Estudo de coorte retrospectiva, com inclusão de todos os jovens transferidos do Ambulatório de Infectologia Pediátrica para o Serviço de Extensão ao Atendimento de Pacientes com HIV/aids, ambulatório responsável pelo atendimento de jovens e adultos com HIV/aids, ambos do Hospital das Clínicas da Faculdade de Medicina da USP, até dezembro de 2012. Foi realizado acompanhamento durante o período de transição, desde os 2 anos anteriores até 2 anos após a transferência entre serviços. Foram descritos o perfil sócio-demográfico e as características clínico-laboratoriais dos participantes no período do estudo. Além disso, foram realizados estudos comparativos dos parâmetros clínicos e laboratoriais dos jovens durante o seguimento nos dois serviços, análise de associações com a viremia do HIV e o status imunológico no momento de chegada ao serviço adulto e avaliação de possíveis fatores preditores dos desfechos clínico-laboratoriais durante o período da transição, com ajuste para possíveis confundidores. RESULTADOS: Durante o período estudado foram transferidos 41 jovens, com mediana de idade de 19 anos, 95% dos quais adquiriram HIV por transmissão vertical, 54% de mulheres, 73% de cor branca e escolaridade mediana de 12 anos. 59% dos jovens já havia iniciado a vida sexual e 4 (10%) estavam gestantes ou tinham parceiras em gestação. O nadir mediano de células CD4+ foi de 117/mm3, com mediana de 15 anos de uso de antirretrovirais e 89% com classificação de aids pediátrica (critério CDC) entre B2 e C3. Na chegada ao SEAP a mediana de células CD4+ foi de 250/mm3 e viremia por HIV foi >= 400cp/ml em 51% dos jovens. Registros de baixa adesão ao tratamento foram relatados no prontuário de 54% dos jovens e 34% apresentou adoecimento relacionado à aids nos últimos 2 anos no ICr. Durante o período da transição a adesão inadequada (aferida por registro de prontuário, retirada de medicamentos antirretrovirais na farmácia ou falta em consultas) foi superior a 70% em ambos os serviços. Contudo, a carga viral mediana teve redução progressiva (3,72 para 1,95 log10 cópias/ml) e a mediana do número de células CD4+ elevou-se ao final do seguimento (289 para 376/mm3). A incidência de adoecimentos relacionados à aids e de hospitalizações foi semelhante em ambos os serviços. No que se refere a fatores de risco associados a desfechos desfavoráveis, não foram encontrados fatores associados à pior adesão. Entretanto, identificou-se associação entre viremia por HIV no período de transição e menor nadir de células CD4+, uso de maior número de esquemas ARV na pediatria e adesão inadequada ao tratamento. Menor número de células CD4+ foi associado a menor nadir de células CD4+, adesão inadequada, maior carga viral do HIV, uso de efavirenz e a não ter o estudo como ocupação exclusiva durante o período de transição pediátrica. Quanto aos adoecimentos relacionados à aids, houve maior incidência entre os jovens com menor nadir de células CD4+ e menor número de células CD4+. Por fim, as hospitalizações foram associadas com adoecimentos relacionados à aids e com baixo nadir de células CD4+. Conclusão: Os jovens avaliados possuem histórico de imunodepressão grave e adoecimentos relacionados à aids, além de longo período de exposição aos antirretrovirais. Chegaram no serviço adulto com dificuldade de adesão ao tratamento, com controle insatisfatório da infecção pelo HIV, em plena vivência da sexualidade e com baixa inserção no mercado de trabalho ou no ensino superior. A transição entre os serviços não teve como impacto a piora na adesão ou nas características clínico-laboratoriais. No entanto, houve manutenção de alto percentual de jovens com viremia detectada e sem a restauração adequada da imunidade. Nesse sentido, há necessidade de atenção redobrada para ocorrência de eventos clínicos desfavoráveis durante esse período, principalmente entre os jovens com menor nadir de células CD4+ e número baixo de células CD4+ / INTRODUCTION: Children with perinatal HIV infection or infected in the 1980\'s and 1990\'s have been transitioning to adult care since late 2000´s. Among young adults with other chronic conditions, transition to adult care is a critical moment that can be associated with worsening disease control, but little is described on unfavorable outcomes among HIV-infected youths. METHODS: Retrospective cohort study, including all consecutive youths referred from pediatric to adult HIV care at Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo up to December 2012. Follow-up comprised the transition period between 2 years prior to 2 years after transition to adult care. We described socio-demographic and clinical characteristics of study participants during the study period. Furthermore, we compared clinical and laboratory variables observed during follow-up in pediatric and adult care, investigated factors associated with viral suppression and immune status at the first visit in the adult care setting, and studied predictors of clinical and laboratory outcomes over the transition period with adjustment for potential confounders. RESULTS: 41 youths were referred to adult HIV care during the study period, with median age of 19 years, 95% of whom acquired HIV infection through mother-to-child transmission; 54% were female, 73% were caucasian, with median schooling of 12 years. 59% reported having had sexual debut and 4 (10%) were either pregnant or had partners expecting a child. Median CD4+ cell nadir was 117/mm3, 15 years was the median time of antiretroviral use and 89% had pediatric CDC AIDS classification between B2 and C3. At the first laboratory assessment at the adult care service, median CD4+ count was 250/mm3 and HIV viremia was detectable for 51% of participants. Poor adherence was recorded in medical charts for 54% of youths and 34% had developed AIDS-related conditions during the last two years of follow-up at pediatric care. During the transition period, inadequate adherence (determined by either medical chart report, inadequate pharmacy withdrawal of antiretrovirals or missed medical appointments) was identified in 70% of the cohort, in both pediatric and adult services. Nonetheless, HIV viral load lowered progressively (median 3.72 to 1.95 log10 copies/ml) and median CD4+ count increased at the end of follow-up (289 to 376 cells/mm3). The incidence of AIDS-related conditions and hospitalizations was similar in pediatric and adult care services. Regarding predictors of unfavorable outcomes, we failed to find factors associated with poor adherence. However, we found association between HIV viral load during the transition period and lower CD4+ nadir, higher number of antiretroviral regimens during pediatric care and inadequate treatment adherence. Lower CD4+ count was associated with lower CD4+ nadir, poor adherence, higher HIV viral load, efavirenz use and with occupation other than being only a student during pediatric transition period. AIDS-related conditions were more frequent among youths with lower CD4+ nadir and lower CD4+ count. Finally, hospitalizations were associated with AIDS-related conditions and lower CD4+ nadir. CONCLUSIONS: Youths enrolled in this study had a history of poor immune status and AIDS-related illnesses, with prolonged exposure to antiretrovirals. At transition to adult care, they presented with important challenges in adherence to treatment, poor control of HIV infection, fully experiencing sexual life and with poor participation in the workforce or high school. The transition from pediatric to adult care services did not worsen adherence or clinical and laboratory outcomes. However, there was still a high percentage of youths with detectable HIV viral load and inadequate immune recovery. Therefore, providers should have increased attention to unfavorable outcomes during the transition period, particularly for youths with lower CD4+ nadirs and lower CD4+ counts

No / Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning. A total of 43 young people with intellectual disabilities, in Bradford, England, who were approaching transition from school or college were recruited to a qualitative study. Their ethnic breakdown was as follows: 16 white British, 24 Pakistani, 2 Bangladeshi and 1 Black African. Each young person was interviewed twice, at recruitment and a year later, to observe any changes in their social networks during transition. Interviews were undertaken with a semi-structured interview schedule and with the pictorial approach of Talking Mats. Both the networks the young people live within, and their sense of what the future might hold for them, are described and linked to Bronfenbrenner's ecological model of human development. The importance of the family and school is emphasised, as is the absence of engagement in leisure activities and work. Transition planning needs to start with mapping the systems individuals live within, areas of strength should be supported and parts of the system, which are not fit for purpose for these young people, should be prioritised for interventions.

La transition du milieu de soins pédiatrique au milieu adulte est un processus exigeant pour les jeunes atteints de maladies chroniques, puisqu’elle a lieu durant une période de leur vie où beaucoup de changements se produisent simultanément. N’étant pas encore tout à fait autonomes, les jeunes doivent apprendre à prendre soin d’eux-mêmes alors qu’ils se retrouvent parachutés dans un nouvel environnement, au sein d’une nouvelle équipe médicale. La diminution de l’encadrement peut en mener certains à prendre leur médication de manière erratique ou à manquer des rendez-vous. En transplantation rénale, une baisse de l’observance thérapeutique peut avoir pour conséquences des épisodes de rejet qui conduisent parfois à la perte du greffon. Pour pallier ces problèmes, deux néphrologues du CHU Sainte-Justine et une néphrologue du Centre hospitalier de l’Université de Montréal (CHUM) se sont consultées afin de mettre en place une clinique de jeunes adultes greffés du rein. Cette clinique s’adresse spécifiquement aux jeunes adultes, tant ceux ayant vécu la transition que ceux greffés à l’âge adulte. L’objectif de cette thèse est de mener l’évaluation des processus ainsi que l’évaluation des effets médicaux et psychosociaux de la clinique des jeunes (CDJ), en comparant le groupe de patients qui y sont suivis aux jeunes patients suivis à la clinique adulte régulière (CAR). Dans le premier article, qui présente l’évaluation des processus, des entrevues semi-structurées sont réalisées auprès de 10 patients de la CDJ, afin de décrire leur expérience de la clinique et d’identifier les composantes contribuant à son succès ainsi que des pistes d’amélioration du service. L’analyse thématique propose six thèmes caractérisant l’expérience des patients: (a) le soutien à l’autonomie versus la surprotection, (b) les garanties de sécurité à travers l’incertitude, (c) l’identification et le sentiment d’appartenance, (d) la complémentarité des approches entre les milieux de soins pédiatrique et adulte, (e) un environnement s’harmonisant avec le mode de vie des jeunes adultes et (f) les raisons de non-adhérence au traitement. Dans le deuxième article, qui présente l’évaluation des effets, une méthodologie mixte quantitative et qualitative est utilisée afin de mettre en contraste l’expérience de 17 patients de la CDJ avec celle de 16 patients de la CAR, de vérifier l’efficacité de la CDJ et de vérifier l’utilité de la théorie de l’auto-détermination (TAD) dans notre contexte. Les analyses quantitatives comparatives révèlent que la CDJ semble efficace surtout dans la période critique post-transition ou post-greffe en milieu adulte. Le fait d’être suivi à la CDJ semble minimiser l’incidence des complications médicales, améliorer l’adhérence au traitement et la qualité de vie physique des patients. Les analyses corrélationnelles établissent des liens entre les variables de la TAD (perception de soutien à l’autonomie, motivation autonome ou contrôlée, sentiment de compétence), l’adhérence au traitement et la qualité de vie. L’analyse thématique met en lumière quatre thèmes: (a) la résilience, (b) les besoins relationnels et l’alliance thérapeutique, (c) la quête d’équilibre et (d) la quête de normalité. Sur la base des résultats présentés dans les deux articles, des recommandations sont formulées afin d’améliorer le service à la CDJ et de servir de lignes directrices pour le développement d’initiatives similaires en transition. / Transition from pediatric to adult care is a demanding process for chronically ill young patients, because it takes place during a period of their life when many changes happen simultaneously. Because they are not entirely autonomous yet, youths must learn to take care of themselves while they are being parachuted in a new environment, within a new medical team. The lack of guidance can lead some to take their medicines erratically or to miss appointments. In kidney transplantation, decreased treatment adherence rates can have consequences such as rejection episodes, which sometimes lead to graft loss. To mitigate these problems, two nephrologists from the CHU Sainte-Justine and one nephrologist from the Centre hospitalier de l’Université de Montréal (CHUM) consulted one another to set up a young adult clinic for kidney transplant recipients. This clinic is specifically destined to young adults, those who transitioned as well as those transplanted as adults. This thesis aims to conduct the process evaluation as well as the evaluation of the clinical and psychosocial outcomes of the young adult clinic (YAC), by comparing its group of patients to the young patients who are attending the regular adult clinic (RAC). In the first article, which presents the process evaluation, semi-structured interviews are conducted with 10 YAC patients, to describe their experience of the clinic and identify its key components as well as possible areas of improvement. Thematic analysis highlights six themes that characterize patients’ experience: (a) autonomy support versus overprotection, (b) stability anchors through uncertainty, (c) identification and belongingness, (d) complementarity of approaches between pediatric and adult care settings, (e) an environment matching young adults’ lifestyles and (f) reasons for non-adherence. In the second article, which presents the outcome evaluation, a quantitative and qualitative mixed methodology is used to contrast the experience of 17 YAC patients with the experience of 16 RAC patients, to verify the YAC’s efficiency and to check if self-determination theory (SDT) is relevant in our context. Comparative quantitative analyses reveal that the YAC seems efficient especially during the critical period post-transition or post-transplant in adult setting. Attending the YAC seems to minimize the incidence of medical complications, to improve treatment adherence and patients’ physical quality of life. Correlational analyses establish relationships between SDT variables (perceived autonomy support, autonomous or controlled motivation, perceived competence), treatment adherence and quality of life. Thematic analysis highlights four themes: (a) resilience, (b) relational needs and the therapeutic alliance, (c) quest for balance and (d) quest for normalcy. On the basis of the findings presented in the two articles, recommendations are formulated in order to improve the YAC services and to serve as guidelines for the development of similar transition initiatives.