ObjectiveWe examined the self-reported preparedness of hospitalized adolescents and young adults (AYA) for transition from pediatric to adult-oriented health care with regard to: 1) previous health care transition (HCT) preparation, 2) Self-Determination Theory (SDT) constructs of health self-management autonomy and competence, and 3) their perception of medical knowledge, attitudes, and concerns.MethodsFrom 2013 to 2015, 139 hospitalized patients aged 15 to 21 years completed a 40-item survey on HCT preparation, attitudes, concerns, and perception of knowledge adapted in part from validated questionnaires of the Department of Health and Human Services, Maternal and Child Health Bureau, and SDT Treatment Self-Regulation Study.ResultsFewer than 40% of all respondents endorsed previous HCT preparation such as providers discussing taking responsibility for their health, transitioning to adult providers, and only 20% had discussed future health insurance needs. Of our AYA population, 84% had 1 or more special health care needs. Older patients, female patients, and those with increased HCT preparation scores had increased autonomous motivation, positive attitudes toward transition, yet also increased transition concerns. Higher autonomous motivation and perceived competence correlated with increased perception of knowledge (P = .002, < .001 respectively) and more positive attitudes toward transition planning (P < .001, .054 respectively). Multivariate regression analysis revealed those with increased HCT preparation and those with increased perceived competence had increased perception of knowledge (β = .25, P = .005 and β = .35, P < .001).ConclusionsOur findings suggest that hospitalized AYA received limited education and preparation regarding key elements of HCT to adult-oriented health care. Moreover, those previously exposed to transition preparation efforts were more likely to have motivation and a sense of competence in HCT skills.

The health care needs of children with hydrocephalus continue beyond childhood and adolescence; however, pediatric hospitals and pediatric neurosurgeons are often unable to provide them care after they become adults. Each year in the US, an estimated 5000–6000 adolescents and young adults (collectively, youth) with hydrocephalus must move to the adult health care system, a process known as health care transition (HCT), for which many are not prepared. Many discover that they cannot find neurosurgeons to care for them. A significant gap in health care services exists for young adults with hydrocephalus. To address these issues, the Hydrocephalus Association convened a Transition Summit in Seattle, Washington, February 17–18, 2017. The Hydrocephalus Association surveyed youth and families in focus groups to identify common concerns with HCT that were used to identify topics for the summit. Seven plenary sessions consisted of formal presentations. Four breakout groups identified key priorities and recommended actions regarding HCT models and practices, to prepare and engage patients, educate health care professionals, and address payment issues. The breakout group results were discussed by all participants to generate consensus recommendations. Barriers to effective HCT included difficulty finding adult neurosurgeons to accept young adults with hydrocephalus into their practices; unfamiliarity of neurologists, primary care providers, and other health care professionals with the principles of care for patients with hydrocephalus; insufficient infrastructure and processes to provide effective HCT for youth, and longitudinal care for adults with hydrocephalus; and inadequate compensation for health care services. Best practices were identified, including the National Center for Health Care Transition Improvement’s “Six Core Elements of Health Care Transition 2.0”; development of hydrocephalus-specific transition programs or incorporation of hydrocephalus into existing general HCT programs; and development of specialty centers for longitudinal care of adults with hydrocephalus. The lack of formal HCT and longitudinal care for young adults with hydrocephalus is a significant health care services problem in the US and Canada that professional societies in neurosurgery and neurology must address. Consensus recommendations of the Hydrocephalus Association Transition Summit address 1) actions by hospitals, health systems, and practices to meet local community needs to improve processes and infrastructure for HCT services and longitudinal care; and 2) actions by professional societies in adult and pediatric neurosurgery and neurology to meet national needs to improve processes and infrastructure for HCT services; to improve training in medical and surgical management of hydrocephalus and in HCT and longitudinal care; and to demonstrate the outcomes and effectiveness of HCT and longitudinal care by promoting research funding.

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Background: Transition readiness is a critical set of skills that youth must acquire as they prepare for managing their healthcare in adulthood, for both youth with and without special health care needs (SHCN). Currently much of the literature pertaining to transition readiness focuses youth with special health care needs (YSHCN). However, all youth, including those without special healthcare needs, should develop skills for managing their health as they transition into adult healthcare. Additionally, youth from rural areas may face additional barriers to acquiring the skills for transition, yet a paucity of information on transition readiness among this population. Objective: We examined transition readiness among youth in two rural high schools in South Central Appalachia. Specifically, we examined differences in readiness among youth with and without SHCN. Design/Methods: We used data from a 2016 school-based survey of adolescents ages 16-18 at two high schools in rural South Central Appalachia Tennessee (n = 437). Using a validated screener, we identified 23% of youth as YSHCN. Compared to healthy youth, a greater proportion of YSHCN were female (68% vs. 49%) or non-Hispanic white (96% vs. 83%). We assessed differences in transition readiness as measured by four subscales (managing medications, appointment keeping, tracking health, and talking with providers) of the the Transition Readiness Assessment Questionnaire (TRAQ). Responses were collasped into two categories, yes/no, for each item and summed to create scale scores. We conducted MANOVA models predicting transition readiness by YSHCN status and demographics as potential covariates. Results: YSHCN scored significantly higher than youth without SHCN on all four measures of transition readiness (p<.01). In multivariate analyses YSHCN (versus other youth) had significantly greater transition readiness for the four subscales: F(4, 401= 5.36, p<.001), controlling for age. Table 1 displays overall and group means, and p-value for the TRAQ subscales. Conclusion(s): Rural YSHCN scored higher on the scale, perhaps due to their increased exposure to the health care system. Readiness skills for the transition to adult health are necessary for all youth however, findings from this study suggest that many rural youth—particularly those often thought of as “healthy”—may not be fully prepared for this transition. Findings point to the need for the development of interventions to help all youth effectively make transition to adult healthcare

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