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OBJECTIVE: The purpose of this study was to conduct a literature review on transition programs from pediatric to adult care and the role of neurosurgery as individuals with spina bifida (SB) transition, and to provide a framework for neurosurgical providers to assist in the transition to adult-centered care. METHODS: A comprehensive literature review was conducted according to the PRISMA statement, with a search in Medline and Embase to identify US clinical programs reporting on their experiences establishing a transition program for adolescents and young adults with SB. Data were collected for authors, year, transition clinic location, model of care for transition clinic, ages served, and specialty clinical team. RESULTS: The literature search yielded 698 articles, 5 of which met the inclusion criteria. These 5 studies included 4 transition programs for which models of care and approach to transition, clinical services involved, establishment of goals, and age of initiation and transition were identified. All programs described setting transition goals, ranging from community services, to self-management, to health care navigation, to patient-driven goals, with 1 program reporting a quality-of-life measurement component to their model. CONCLUSIONS: Robust SB transition programs can be established by applying the expanded chronic care model, reviewing lessons learned by other programs, advocating at the institutional level, and seeking support via professional organizations. While the comprehensive role of neurosurgical providers in these programs is still being defined, a shared vision of enhancing the health and quality of life for individuals with SB and their families is needed by all subspecialists involved.

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OBJECTIVE: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF). METHODS: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence. Self-care. Education) for patients aged 16-25 years who transitioned to adult care from 2013 through 2019. We modeled change in forced expiratory volume in 1 second % predicted and weight using linear regression fit with generalized estimating equations. Predictors included gap in care (time between last pediatric and first adult outpatient visit), transition program engagement, and sociodemographic and medical factors. RESULTS: Among 12 420 adolescents and young adults (AYAs), 3876 transitioned to adult care with a median gap in care of 7.6 months. Patients from CF centers with greater rates of CF RISE engagement had improved lung function and weight at their first adult outpatient visit. Coverage on a parent's insurance plan and absence of CF complications predicted increased lung function. History of a nonlung transplant and sinus disease predicted increased weight. Comorbid diabetes mellitus and gaps in care >3 months predicted decreased lung function with longer gaps in care associated with greater decrease. A gap in care of 6-9 months predicted decreased weight. Control variables including baseline forced expiratory volume in 1 second and weight, and exacerbation status were also statistically significant. CONCLUSIONS: Findings suggest 2 promising targets to improve transition of AYAs with CF: increasing AYA engagement in CF RISE and reducing gaps in care during the transition period.

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ABSTRACT Objective: To map the transition process from the perspective of pediatricians and their adolescent patients, and to suggest a transition protocol. Methods: This is a descriptive, cross-sectional study conducted in a pediatric outpatient clinic of a public tertiary hospital. Pediatricians answered a questionnaire about the transition process, and that was evaluated in a descriptive manner. The Transition Readiness Assessment Questionnaire (TRAQ) on health autonomy was answered by the adolescents and the analysis was performed using the χ2 and Mann-Whitney tests. p<0.05 were considered significant. Results: 31 pediatricians (16 residents, 15 supervisors) were enrolled, with a mean age of 40.1 (±16.9), 87% women, with years working in Pediatrics ranging from 2 to 45 years (median of 5 years). Most doctors agreed that there was no transition plan, but they stimulated the patient's autonomy and talked to the patient and family members about any existing chronic diseases. A total of 102 adolescent patients participated, with a median age of 15; 56% were female. The TRAQ median was 58, with similar scores between females and males, and higher scores in those older than 16 years of age (Mann-Whitney U test, p=0.01). The patients reported ease in face-to-face communication with their doctors, but great difficulty in talking about health issues over the phone. Conclusions: Even without a transition protocol, adolescents developed several self-care skills as they aged. The lack of a transitional protocol led to conflicting opinions, which reinforces the need for improvement. We suggest a flowchart and transition protocol.

Resumo Objetivo: Mapear o processo de transição na perspectiva de pediatras e de seus pacientes adolescentes bem como sugerir um protocolo de transição. Métodos: Estudo descritivo, transversal, realizado em um Ambulatório de Pediatria de um hospital público terciário. Pediatras responderam a um questionário sobre o processo de transição, que foi avaliado de forma qualitativa. O Questionário de Avaliação do Preparo para a Transição (TRACS) foi respondido pelos adolescentes, e a análise foi feita com testes do qui-quadrado e de Mann-Whitney. Valores p<0,05 foram considerados significantes. Resultados: Participaram do estudo 31 pediatras (16 residentes, 15 supervisores), com média de idade de 40,1 (±16,9) anos, 87% do sexo feminino, tempo de atuação na Pediatria variando de dois a 45 anos, com mediana de cinco anos. A maioria dos médicos concordava que não havia um plano de transição, mas eles estimulavam a autonomia do paciente e conversavam com pacientes e familiares sobre qualquer doença crônica presente. Participaram da pesquisa 102 pacientes adolescentes, com mediana de idade de 15 anos, 56% do sexo feminino. A mediana do TRACS foi de 58, com escores semelhantes entre os sexos feminino e masculino, e escores superiores nos maiores de 16 anos (teste U de Mann-Whitney, p=0,01). Os pacientes relataram facilidade na comunicação presencial com seus médicos, mas grande dificuldade para falar sobre questões de saúde por telefone. Conclusões: Mesmo sem protocolo de transição, os adolescentes desenvolveram várias habilidades de autocuidado com o avanço da idade. A falta de protocolo levou a opiniões conflitantes, reforçando a necessidade de melhor estruturação. Os autores sugerem a criação de um fluxograma e um protocolo de transição.

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OBJECTIVE: To determine the association between potentially avoidable transfers (PATs) and emergency department (ED) pediatric readiness scores and the score's associated components. STUDY DESIGN: This cross-sectional study linked the 2012 National Pediatric Readiness Project assessment with individual encounter data from California's statewide ED and inpatient databases during the years 2011-2013. A probabilistic linkage, followed by deterministic heuristics, linked pretransfer, and post-transfer encounters. Applying previously published definitions, a transferred child was considered a PAT if they were discharged within 1 day from the ED or inpatient care and had no specialized procedures. Analyses were stratified by injured and noninjured children. We compared PATs with necessary transfers using mixed-effects logistic regression models with random intercepts for hospital and adjustment for patient and hospital covariates. RESULTS: After linkage, there were 6765 injured children (27% PATs) and 18 836 noninjured children (14% PATs) who presented to 283 hospitals. In unadjusted analyses, a 10-point increase in pediatric readiness was associated with lower odds of PATs in both injured (OR 0.93, 95% CI 0.90-0.96) and noninjured children (OR 0.90, 95% CI 0.88-0.93). In adjusted analyses, a similar association was detected in injured patients (aOR 0.92, 95% CI 0.86-0.98) and was not detected in noninjured patients (aOR 0.94, 95% CI 0.88-1.00). Components associated with decreased PATs included having a nurse pediatric emergency care coordinator and a quality improvement plan. CONCLUSIONS: Hospital ED pediatric readiness is associated with lower odds of a PAT. Certain pediatric readiness components are modifiable risk factors that EDs could target to reduce PATs.

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Abstract The main objective of this work is to describe the formation of the Transition Adolescent Clinic (TAC) and understand the process of transitioning adolescents with HIV/AIDS from pediatric to adult care, from the vantage point of individuals subjected to this process. A qualitative method and an intentional sample selected by criteria were adopted for this investigation, which was conducted in São Paulo, Brazil. An in-depth semi-structured interview was conducted with sixteen HIV-infected adolescents who had been part of a transitioning protocol. Adolescents expressed the need for more time to become adapted in the transition process. Having grown up under the care of a team of health care providers made many participants have reluctance toward transitioning. Concerns in moving away from their pediatricians and feelings of disruption, abandonment, or rejection were mentioned. Participants also expressed confidence in the pediatric team. At the same time they showed interest in the new team and expected to have close relationships with them. They also ask to have previous contacts with the adult health care team before the transition. Their talks suggest that they require slightly more time, not the time measured in days or months, but the time measured by constitutive experiences capable of building an expectation of future. This study examines the way in which the adolescents feel, and help to transform the health care transition model used at a public university. Listening to the adolescents’ voices is crucial to a better understanding of their needs. They are those who can help the professionals reaching alternatives for a smooth and successful health care transition.

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The main objective of this work is to describe the formation of the Transition Adolescent Clinic (TAC) and understand the process of transitioning adolescents with HIV/AIDS from pediatric to adult care, from the vantage point of individuals subjected to this process. A qualitative method and an intentional sample selected by criteria were adopted for this investigation, which was conducted in São Paulo, Brazil. An in-depth semi-structured interview was conducted with sixteen HIV-infected adolescents who had been part of a transitioning protocol. Adolescents expressed the need for more time to become adapted in the transition process. Having grown up under the care of a team of health care providers made many participants have reluctance toward transitioning. Concerns in moving away from their pediatricians and feelings of disruption, abandonment, or rejection were mentioned. Participants also expressed confidence in the pediatric team. At the same time they showed interest in the new team and expected to have close relationships with them. They also ask to have previous contacts with the adult health care team before the transition. Their talks suggest that they require slightly more time, not the time measured in days or months, but the time measured by constitutive experiences capable of building an expectation of future. This study examines the way in which the adolescents feel, and help to transform the health care transition model used at a public university. Listening to the adolescents' voices is crucial to a better understanding of their needs. They are those who can help the professionals reaching alternatives for a smooth and successful health care transition.

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