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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.

BACKGROUND: Households experiencing "food insecurity" have limited access to food due to a lack of money or resources. Poor nutrition, from food insecurity, can impact physical and cognitive development of children. Study objectives were to document the prevalence of Tennessee child care programs screening for food insecurity, explore differences between programs receiving child and adult care food program (CACFP) funding and those screening for food insecurity, and understand possible burdens food insecurity places on child care families as perceived by child care program directors. METHODS: In this cross-sectional study of licensed Tennessee child care programs, a 10-question survey and four-question follow-up survey were electronically distributed. Analysis included descriptive statistics, a chi-square of programs receiving CACFP funds and screening for food insecurity, and themes analysis of open-ended responses. RESULTS: The average child care program enrollment (N = 272) was 80.16 with programs serving mostly preschoolers (98.53%) and toddlers (91.91%). Over half (56.99%) of programs reported they received CACFP funding, yet only 9.19% screen for food insecurity. Chi-square analysis found that programs receiving CACFP funds differ significantly on whether they screen households for food insecurity [Formula: see text] (1, n = 237) = 16.93, p ≤ 0.001. Themes analysis (n = 41) revealed that many child care program directors do not view food insecurity as a burden for families. CONCLUSIONS: Child care programs receiving CACFP funds are more likely to screen families for food insecurity than programs who do not. Programs indicate a willingness to include food insecurity screening questions on child care paperwork.

La transition est un sujet qui demeure d’actualité, et ce, malgré qu’elle fasse l’objet de plusieurs recherches, et ce, depuis des décennies. Or, certaines transitions semblent être moins étudiées, alors qu’elles nécessitent aussi une attention particulière afin d’améliorer la qualité et la sécurité des soins, de même que le continuum inter établissement. D’ailleurs, la transition d’un centre hospitalier pédiatrique à un centre hospitalier pour adultes auprès de jeunes patients ayant eu une transplantation hépatique est l’une de ces transitions. Cette étude avait pour but d’explorer la perception de jeunes adultes ayant eu une transplantation hépatique, de parents et de professionnels de la santé quant à la transition d’un centre hospitalier pédiatrique à un centre hospitalier pour adultes. Afin d’encadrer cette étude, le cadre théorique de Meleis (2010) a été retenu. Un devis qualitatif descriptif et exploratoire a été utilisé. Des entrevues semi-dirigées (n=10) ont été réalisées avec de jeunes patients (n=7), ainsi que des parents (n=3), et un groupe de discussion a été réalisé avec des professionnels de la santé (n=5). Une analyse thématique des données collectées a permis d’identifier sept thèmes, soit 1) les différents types de transition; 2) les émotions associées à la transition; 3) les caractéristiques individuelles; 4) la préparation à la transition; 5) l’approche des professionnels entre le centre hospitalier pédiatrique et le centre hospitalier pour adultes; 6) les besoins de chacun et enfin, 7) les pistes d’amélioration proposées par les patients, les parents et les professionnels de la santé. Les résultats de cette recherche permettent, notamment, d'approfondir la compréhension relative au processus de la transition d’un centre hospitalier pédiatrique à un centre hospitalier pour adultes. Ils permettent également d'ajouter une nouvelle perspective de la transition du point de vue des jeunes patients, des parents et des professionnels de la santé, en plus de proposer d'éventuelles recherches de plus grande envergure. En somme, cette présente recherche, de par sa nature descriptive exploratoire, permet d'offrir une compréhension davantage approfondie du processus de transition vécue par ces jeunes adultes ayant eu une transplantation hépatique en vue d’améliorer la qualité et la sécurité des soins, de même que le continuum inter établissement. / Transition is a topic that remains topical, despite the fact that it has been the subject of much research for decades. However, some transitions seem to be less studied, even though they also require special attention in order to improve the quality and safety of care, as well as the inter-institutional continuum. The transition from a pediatric to an adult hospital for young liver transplant patients is one such transition. The purpose of this study was to explore the perceptions of young adult liver transplant patients, parents and healthcare professionals regarding the transition from a pediatric to an adult hospital. Meleis' (2010) theoretical framework was used to frame this study. A descriptive and exploratory qualitative design was used. Semi-directed interviews (n=10) were conducted with young patients (n=7) and parents (n=3), and a focus group was conducted with healthcare professionals (n=5). A thematic analysis of the data collected identified seven themes: 1) the different types of transition; 2) the emotions associated with the transition; 3) individual characteristics; 4) preparation for the transition; 5) the approach of professionals between the pediatric hospital center and the adult hospital center; 6) the needs of each; and finally, 7) the avenues for improvement suggested by patients, parents and health professionals. In particular, the results of this research will provide a better understanding of the transition process from a pediatric hospital center to an adult hospital center. They also add a new perspective on the transition from the perspectives of young patients, parents and healthcare professionals, and suggest possible areas for further research. In sum, this research, by its exploratory descriptive nature, provides a more in-depth understanding of the transition process experienced by these young adults who have had a liver transplant in order to improve the quality and safety of care, as well as the inter-institutional continuum.

Aging adolescents with rheumatic disease adopt responsibility for disease management from parents. Education on transition care is usually provided to patients by healthcare providers or parents. However, parent-focused transition resources are sparse with limited understanding of parental role and involvement during transition. After providing both parent and adolescent with the Transition Toolkit (parent-centered transition pamphlet, 5 domains of transition readiness roadmap, tip sheets) to support transition to adult care, we aimed to i) determine the change in patient’s transition readiness, using the Transition-Q, ii) explore the influence of parent-adolescent relationships on transition readiness, using the Parent-Adolescent Communication Scale (PACS), and iii) obtain feedback on the Toolkit’s effectiveness, using a questionnaire. A prospective cohort study of patients 14-18 years was conducted at McMaster Children’s Hospital rheumatology transition clinic (includes pediatric rheumatologists, allied health, and the adult rheumatologist patients see post-transfer). Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected. After obtaining 2 Transition-Q scores from routine clinical care prior to enrollment, the Toolkit was shared with participants, and 2 follow-up Transition-Q scores were collected. Generalized estimating equation analyses were performed to determine the Toolkit’s impact on transition readiness and explore the parent-adolescent relationship and communication quality. Subgroup analyses were conducted by sex. A questionnaire was used to obtain Toolkit feedback. Of 21 patients, 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared with adolescents and parents (β=7.8, P<0.0 and β=15.5, P<0.0, respectively). Transition readiness did not seem to be influenced by the quality of communication between parent and child. Feedback from questionnaire responses found the Toolkit to be a helpful resource but standardization of transition programs and further investigation into parent-adolescent relationships, gender differences, and intervention sustainability is needed. / Thesis / Master of Science Rehabilitation Science (MSc) / Aging youths with rheumatic disease adopt the responsibility of disease management from parents. However, few resources to educate parents on transition and transition support exist. After giving patients and parents a Transition Toolkit, we aimed to i) determine change in patient’s transition readiness, ii) explore the influence of parent-adolescent relationships on transition readiness, and iii) obtain feedback on Toolkit use. Twenty-one study participants were recruited. Participant demographics, transition readiness scores, and parent-adolescent communication scores were collected. Transition-Q scores were collected before and after Toolkit provision. Analyses were performed to determine Toolkit impact and influence of parent-adolescent communication on transition readiness. Toolkit feedback from parents and adolescents were obtained through a questionnaire. Transition-Q scores increased at each follow-up, with the greatest increase after the Toolkit was shared. Parent-adolescent relationships did not influence transition readiness. Toolkit feedback suggests digital reminders to improve long-term retention of transition education. Future studies with greater patient diversity are recommended.

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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