Problemställning: Fler barn och ungdomar med kroniska sjukdomar övergår till vuxensjukvård då medicinsk och medicinteknisk utveckling blivit mer avancerad. Detta ställer krav på vuxensjukvården att kunna ta över ungdomar som kommer från barnsjukvården så att de upplever en god och tillfredställande vård. Det finns dock lite forskning kring hur övergången till vuxensjukvård upplevs av ungdomar med kroniska sjukdomar. Syfte: Syftet var att beskriva hur ungdomar med kronisk sjukdom upplever övergången från barn- till vuxensjukvård. Metod: Studien genomfördes som en litteraturöversikt och baserades på 14 vetenskapliga artiklar. Dessa granskades, analyserades och kategoriserades för att finna likheter och skillnader i ungdomars upplevelse av övergången till vuxensjukvård. Resultat och Konklusion: I resultatet framkom fem kategorier som benämdes ”Känslan av att bli vuxen”, ”Oro och Rädsla”, ”Att känna sig förberedd och delaktig”, ”Kommunikation mellan vårdenheterna” och ”Skilda världar”. Att övergå till vuxensjukvård innebar en period av oro och rädsla. Ungdomar med kroniska sjukdomar upplevde att förberedelser och delaktighet inför övergången var otillräcklig och påbörjades alltför sent. De upplevde även en bristande kommunikation mellan patient och vårdpersonal samt mellan barn- och vuxensjukvård, vilket försvårade övergången. Implikation: Det är av stor betydelse att sjukvården utarbetar tydligare riktlinjer och utvecklar samarbetet mellan barn- och vuxensjukvård i syfte att underlätta övergången för ungdomarna. Det behövs vidare forskning kring hur detta samarbete skulle kunna se ut för att tillgodose ungdomarnas behov av förberedelser och delaktighet i sin egenvård och i övergångsprocessen. / Problem: Increasing numbers of children and adolescents with chronic diseases transfer to adult health care due to the fact that the medical and technological developments have become more advanced. This requires that the adult care is capable to transfer young people from childcare so that they experience a good and satisfying care. However, there is little research about how the transition to adult care is experienced by young people with chronic diseases. Aim: The aim was to describe how young people with chronic disease experience the transition from child to adult care. Method: The study was conducted as a literature review and was based on 14 scientific articles. These were reviewed, analyzed and categorized to identify similarities and differences in young people's experience of transition to adult care. Results and Conclusion: The results revealed five categories: "Feelings of becoming an adult," "Worry and Fear", "To feel prepared and involved", "Communication between care units" and "Different worlds". Changing to adult care meant a period of anxiety and fear. Adolescents with chronic disease felt that the preparation and participation due to transition was inadequate and began too late. They also experienced a lack of communication between patients and health professionals, and between child and adult care, which made the transition difficult and complicated. Implication: It is important that health care is developing clearer guidelines and develop cooperation between adult and child care in order to facilitate the transition of young people. There is further need of research on how this could be formed in order to satisfy young people´s needs for preparation and participation in their self-care and in the transition process.

L’amélioration du pronostic des pathologies chroniques à début pédiatrique s’est accompagnée d’un nombre grandissant de patients atteignant l’âge adulte. Cependant, l’adolescence et l’entrée dans la vie adulte est une période de multiples changements et de crises, pouvant être à l’origine de rupture avec le système de soins et de complications médicales. Dans cette thèse, j’ai tout d’abord décrit les hospitalisations et la mortalité des jeunes ayant été déclarés en affection de longue durée (ALD) avant 14 ans (N=1752), en comparaison à des jeunes sans pathologie chronique (N=52346). Pour cela, une cohorte rétrospective (2005-2014) a été reconstruite à partir de l’échantillon généraliste des bénéficiaires de l’Assurance maladie. Environ 3% des jeunes de 14 ans avaient déjà été déclarés en ALD. Les profils de mortalité par sexe et les tendances par âge de l’incidence des hospitalisations étaient différents de ceux de la population générale du même âge, en particulier après 18 ans, où l’on observait une chute de l’incidence des hospitalisations. Ensuite, à partir de ces mêmes données, j’ai montré que le pronostic de ces jeunes malades, y compris la mortalité, était associé à la précarité sociale, mesurée par la couverture maladie universelle complémentaire, montrant ainsi que la gratuité des soins à laquelle ces jeunes ont droit dans le système de santé français ne permettait pas de compenser les inégalités sociales dans cette population. Enfin, à un moment ou un autre, ces jeunes sont transférés vers un service d’adultes. Ce passage est un moment crucial dans leur suivi, qui peut être à l’origine d’une discontinuité du suivi médical. Des programmes de transition sont mis en place progressivement pour préparer et accompagner ce transfert. J’ai réalisé une revue systématique de la littérature (23 études) qui a montré qu’il existait deux aspects de la continuité des soins au moment de ce transfert : l’engagement (premier contact) et le maintien dans le suivi en service d’adultes. Cette analyse a également mis en exergue la pauvreté des études existant actuellement pour évaluer les programmes de transition en termes de continuité des soins. Finalement, ces résultats soulèvent de nombreuses questions, notamment les stratégies d’adaptation de ces jeunes vis-à-vis des situations à haut risque et le rôle du transfert en service d’adultes sur le comportement des patients, le pronostic et les pratiques cliniques. Des études incluant largement l’ensemble des jeunes atteints d’une pathologie chronique, intégrant notamment des facteurs liés à l’organisation des soins, liés à la pathologie, individuels et familiaux, devraient être encouragées. / The prognosis of childhood-onset chronic conditions has improved, such that more patients now reach adulthood. However, adolescence and entry into adulthood is a critical period that may be associated with poor outcomes, including gaps in care continuity and medical complications. Here, I first described hospitalization and mortality rates in youths registered for a long-term disease (LTD) before the age of 14 (N=1,752), relative to those with no LTD (N=52,346). A retrospective cohort (2005-2014) was built from a sample of the French national health insurance database, called Echantillon généraliste des Bénéficiaires. Approximately 3% of 14-year-old youths had been registered for a LTD. The mortality patterns by gender and the trend in hospitalization rates by age were different from those in the general population of the same age, especially after reaching the age of 18, which was followed by a fall in hospitalization rates. Then, using the same data, I showed that the prognosis of these youths living with a chronic disease, including mortality, was associated with low socio-economic level, as measured by being covered by Couverture Maladie Universelle Complementaire, a public complementary health insurance offering free access to care, delivered on the basis of very low househould incomes. Hence, overcoming financial barriers did not offset social health inequalities in this population. At last, one day, these youths have to be transferred to adult care. Moving to adult care is a critical time in patients’ follow-up that may lead to discontinuity in medical care. Transition programs are being gradually implemented, to prepare and smooth the transfer and support youths during this period. I performed a systematic review of literature (23 studies) that highlighted two aspects of continuity of care during transfer: engagement (first contacts) and retention in adult care once the first contact has been established. This review also emphasized the paucity of knowledge to evaluate transition programs in terms of care continuity. Finally, the results of this PhD raises many issues that need to be addressed, including coping strategies of young patients with high risk situations, and the role of transfer to adult care on patient behavior, prognosis and clinical practices. Studies involving patients with a large spectrum of severe chronic diseases, including factors related to healthcare organization, related to the disease, individual and familial, should be encouraged.

No description available.

Bakgrund: I Sverige vårdas barn och ungdomar med långvarig sjukdom som är i behov av sjukhusvård oftast på enheter speciellt anpassade för unga personer. Vid 18 års ålder flyttas ansvaret för dessa patienter från barnsjukvården till vuxensjukvården. Dessa två vårdformer skiljer sig åt i arbetssätt, framförallt gällande hur familjemedlemmar involveras i vården. I barnsjukvården läggs stort fokus på att involvera och vårda hela familjen, medan de unga vuxna i vuxensjukvården ofta förväntas fungera självständigt och ta fullt ansvar för sin vård. Att vara ung, ha en långvarig sjukdom och genomgå byte av vårdform är faktorer som tillsammans skapar en sårbar situation. Syfte: Att belysa hur unga vuxna med långvarig sjukdom upplever övergången från barnsjukvård till vuxensjukvård. Metod: En integrativ litteraturöversikt baserad på tolv kvalitativa vetenskapliga artiklar. Resultat: Fem teman framkom: känslor och förväntningar i samband med övergången, upplevda hinder för en lyckad övergång, upplevd beredskap inför övergången, upplevda skillnader mellan barn- och vuxensjukvård, samt upplevda förändringar i rollfunktion i samband med övergången.  Diskussion: De mest betydande delarna av resultatet har diskuterats i förhållande till Roys adaptionsmodell, tidigare forskning och till unga vuxnas rättigheter. / Background: In Sweden children and youths with chronic diseases commonly receive hospital care in pediatric clinics. At the age of 18 these patients are transferred to adult care. One main difference between pediatric and adult care is that in pediatric care there is an ambition to involve the whole family in the care of the young person, whereas in adult care the young person is expected to be independent and to take full responsibility for his or her own care. Being young, having a chronic disease and to undergo a transition of care are factors that together make up a vulnerable situation. Aim: To describe the experiences of young adults with a chronic disease transitioning from pediatric to adult healthcare. Method: An integrative literature review based on twelve qualitative scientific articles. Results: Five themes emerged: emotions and expectations associated with the transition, perceived barriers to a successful transition, perceived readiness to transition, perceived differences between pediatric and adult health care, and experiences of changes in role function associated with the transition. Discussion: The main findings were discussed in relation to the Roy adaptation model, previous research and the rights of young adults transitioning to adult care.

Transitioned perinatally HIV-infected patients may be at increased risk for poor outcomes, yet the impact of transition and of transition programs on health are not well understood. This research examined: (1) post-transition mortality, (2) engagement in adult HIV care, (3) transition experiences, and clinical and sociodemographic influences, including transition program exposure. Data were collected from patients who had transitioned from a Florida pediatric clinic to adult HIV care between January 2003 and September 2012. Post-transition mortality and care engagement were assessed in a retrospective analysis of medical record data. Fisher exact and Kruskal-Wallis tests were used for significance testing. Risk ratios (RRs) were calculated to assess strength of associations. Stratified analysis controlled for confounding. Transition experiences were examined in a mixed-methods study, with qualitative data from a computer-assisted survey subjected to thematic analysis. Of 51 transitioned patients, nine (18%) had died by May 2014, five (56%) in the first post-transition year. Of 42 survivors, 33 were eligible; 27 (82%) provided consent. Post-transition mortality was high, particularly in those severely immunosuppressed (CD4 count <100/mm3; RR =6.0, 95% CI =1.88-19.19 [P=.005]) at transition. When controlled for CD4 count, employment was associated with decreased (adjusted RR= 0.19; 95% CI=0.04-0.88 [P=.02]), and high school non-completion with increased (adjusted RR= 3.0; 95% CI=1.37-6.40 [P=.07]) mortality risk. The number of kept HIV appointments decreased from last pre-transition (Median = 5, IQR 4-6) to first post-transition (Median = 2, IQR 1-10; P=.002) year; the proportion of poorly engaged increased from 3% to 35% (P=.006), with no significant changes between first and second post-transition years. Non-Hispanic black and low-income participants were less likely to be regularly engaged in adult HIV care one year post-transition. Transition program exposure did not significantly affect mortality or care engagement. Most of 27 received transition services, but 59% had trouble doing well in adult care. Needs for patient-centered care, with caring, personal patient-provider relationships and accessible HIV care, characterized post-transition experiences. This research suggested that transitioned perinatally HIV-infected young adults are at risk for poor health outcomes. Systematic programs using a socio-ecological framework to include multi-level interventions and post-transition support may improve outcomes.

A l'adolescence, les patients porteurs de maladie chronique depuis l'enfance passent une étape de transition des soins, qui implique la sortie des services pédiatriques et l'entrée dans les services pour adultes. Cette étape pose de nombreux défis et elle est reconnue comme une période à risque de rupture de soins. Pour éviter ces situations, des recommandations internationales et des programmes variés ont été proposées. En France, il n'existe pas de recommandation générique pour la transition. Notre objectif était de proposer un programme générique, pertinent et faisable pour la transition des jeunes porteurs de maladies chroniques variées dans un grand nombre de services en France. Pour cela nous avons employé une méthode mixte : 1) Revue systématique des études interventionnelles au niveau international ; 2) Enquête qualitative des pratiques de transition existantes dans un ensemble de services hospitaliers d'Ile de France ; 3) Enquête de consensus national pour l'élaboration d'un programme de transition pertinent et faisable par la méthode Delphi. Nous avons observé que l'existence de programmes de transition était très dépendante des services : certains ne proposant pratiquement aucune adaptation de la prise en charge, d'autres proposant des programmes très structurés. Globalement, les programmes sont peu spécifiques des pathologies. A l'issue de ce travail de thèse, nous avons proposé un programme générique qui peut être considéré comme un tronc commun. Il pourra notamment permettre aux professionnels impliqués dans le suivi de pathologies peu étudiées dans le contexte de la transition de proposer des pratiques essentielles et minimales aux patients concernés. / At the end of their adolescence, patients with chronic disease since childhood go through a phase of healthcare transition, which involves the discharge of pediatric services and the entry into adult care services. This step poses many challenges and is recognised as a high risk period of discontinuity in care pathway. To avoid these situations, international recommendations and various programs have been proposed. In France, there is no generic recommendation for transition to adult care.The final goal of this thesis work was to propose a generic, relevant and feasible program for the transition of young people with varied chronic diseases into a large number of services in France.For this purpose, we used a mixed method research including: 1) Systematic review of intervention studies at the international level; 2) Qualitative study of existing transition practices in a set of hospital services in the Ile de France region (including Paris and its surroundings); 3) National consensus survey for the development of a relevant and feasible transition program using the Delphi method.We observed that the existence of transition programs was highly dependent on services: some offering almost no adaptation of care during this process, others offering highly structured programs. Overall, the programs were not really specific to pathologies.At the end of this thesis work, we proposed a generic program which can be considered as a common core of transition practices. Among other thing, it will allow professionals involved in the follow-up of pathologies that are under-studied in the context of the transition to propose essential and minimal practices to their patients.

No description available.

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

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.