Health Care Transitions最新文献

{"title":"Development and clinical implementation of a care guideline to support self-management and responsibility transition in adolescents and young adults with biliary atresia","authors":"Katsuhiro Hiratsuka RN, PHN, PhD,&nbsp;Hiroko Watayo MD, MPH, PhD,&nbsp;Nobue Nakamura RN, PHN, CNM, PhD","doi":"10.1016/j.hctj.2026.100150","DOIUrl":"10.1016/j.hctj.2026.100150","url":null,"abstract":"<div><h3>Objective</h3><div>This study developed, refined, and implemented a care guideline for adolescents and young adults (AYAs) with biliary atresia surviving with their native livers and their parents, based on a responsibility transition process model. We evaluated its clinical usefulness and identified challenges related to sustainable implementation. This study extends a previously developed responsibility transition model by translating it into a clinically implemented guideline and examining its real-world applicability.</div></div><div><h3>Methods</h3><div>An implementation-focused, multiphase mixed-methods design was used. Phase 1 involved drafting a care guideline addressing developmental stages, daily life adjustment, parental role changes, and potential future liver transplantation. Phase 2 comprised expert reviews by five pediatric nursing professionals. In Phase 3, three experienced outpatient nurses implemented the guideline with six AYA–parent dyads (AYAs aged 15–22 years) over 12 months. Nurse group interviews were qualitatively analyzed, and transition readiness was assessed before and after the intervention.</div></div><div><h3>Results<em>:</em></h3><div>Qualitative analysis identified four categories, revealing usefulness and challenges as intertwined in daily practice. Descriptive questionnaire findings showed relatively stable knowledge scores, whereas behavior scores tended to decline among both AYAs and parents over the 12-month period. Guideline usefulness was perceived as a dynamic implementation process shaped by facilitating and constraining factors operating at individual, team, and organizational levels.</div></div><div><h3>Conclusion</h3><div>This study translated a responsibility transition process model into an implementable care guideline and demonstrated its feasibility within routine pediatric outpatient care. Contextual barriers to sustained use, including workload, role clarity, and organizational integration, were identified, providing directions for future refinement and broader application to AYAs with other childhood-onset chronic conditions.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100150"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148640466","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Self-management for youth and young adults with childhood-onset chronic conditions: A scoping review of health care transition planning literature","authors":"Jennifer Emilie Mannino,&nbsp;Cara C. Young,&nbsp;Monique M. Ridosh,&nbsp;Kristin Cleverley,&nbsp;Lin Li,&nbsp;Lynn Kysh,&nbsp;Catherine A. Harwood,&nbsp;Brooke Allemang,&nbsp;Linda Tirabassi-Mathis,&nbsp;Sharon Hudson,&nbsp;Stephanie M. Key,&nbsp;Benjamin C. Schwartzman,&nbsp;Jihye Lee,&nbsp;Manu S. Raam,&nbsp;Cecily L. Betz","doi":"10.1016/j.hctj.2026.100147","DOIUrl":"10.1016/j.hctj.2026.100147","url":null,"abstract":"<div><h3>Objective</h3><div>To determine the extent to which self-management has been investigated and reported in literature focused on the transition from pediatric to adult healthcare for youth and young adults with childhood-onset chronic conditions (CCCs).</div></div><div><h3>Introduction</h3><div>An estimated 1.2 million youth with CCCs are expected to enter adulthood annually in the United States. As these youth transition from pediatric to adult health systems, they are at risk for experiencing critical gaps in care continuity and adverse health outcomes. Health care transition models have emerged to address these gaps, with self-management recognized as a critical component of successful transition.</div></div><div><h3>Inclusion criteria</h3><div>The included literature addressed self-management in the context of the transition from pediatric to adult health care for youth and young adults (aged 9–35 years) with CCCs. Results were limited to English-language, peer-reviewed primary research articles.</div></div><div><h3>Methods</h3><div>A comprehensive search of six databases (MEDLINE, Embase &amp; Embase Classic, CINAHL Complete, PsycINFO, Cochrane CENTRAL, and Web of Science Core Collect) was completed in November 2024. Each record was screened, assessed for eligibility, and extracted by two independent reviewers using the Covidence platform. Data were analyzed and presented using descriptive statistics.</div></div><div><h3>Results</h3><div>A total of 640 peer-reviewed articles were included. Articles were published between 1989 and April 2025, with the majority (85%) being published post-2014 and originating from the United States (51%). Most studies employed cross-sectional designs (78%) and quantitative methods (61%). Only 89 studies involved an intervention. Study participants included youth or young adults (57%), providers (36%), parents/caregivers (22%), or a combination of these groups (34%). Studies primarily focused on youth with physical conditions (84%) or a combination of condition types (9%). Studies focused solely on intellectual/developmental disabilities (5%) and mental health conditions (&lt;1%) were notably underrepresented. Self-management was primarily examined in relation to condition management only (77%), with 23% of the studies also addressing social and/or community-based outcomes.</div></div><div><h3>Conclusions</h3><div>This scoping review reveals trends and gaps in the health care transition literature. Key gaps include the paucity of research on self-management in youth with intellectual/developmental disabilities and mental health conditions, limited evidence on post-transfer outcomes, and inconsistent approaches to measuring and defining self-management.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100147"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13329513/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148392880","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prevalence, predictors, and moderators of transfer in primary care","authors":"Bridget N. Murphy PhD ,&nbsp;Amy C. Lang PhD ,&nbsp;Constance A. Mara PhD ,&nbsp;Jessica T. Hinojosa MS ,&nbsp;Elysia M. Smith BS ,&nbsp;Thomas Elliott MD ,&nbsp;Mary Carol Burkhardt MD, MHA ,&nbsp;Margaret N. Jones MD, MS ,&nbsp;Lori E. Crosby PsyD","doi":"10.1016/j.hctj.2025.100126","DOIUrl":"10.1016/j.hctj.2025.100126","url":null,"abstract":"<div><h3>Objective</h3><div>Health care transition from pediatric to adult primary care is understudied, and factors associated with successful transfer to adult care are not well understood.</div></div><div><h3>Methods</h3><div>The current study surveyed a sample of patients (<em>N</em> = 110) of transition age (18 – 22, <em>M</em>_<em>age</em> = 19.42, <em>SD</em>_<em>age</em> = 1.16) who attended a pediatric primary care practice. Mixed methods were used to assess the prevalence of successful transfer to adult primary care, factors associated with successful transfer, as well as barriers, facilitators, and recommendations for improving transition support.</div></div><div><h3>Results</h3><div>45 % of the sample (<em>n</em> = 50) reported attending an adult primary care appointment. Contextual factors assessed (e.g., socio-economic status, disease complexity) and transition constructs (e.g., transition supports, transition behaviors, and transition attitudes) were not associated with transfer. No statistically significant predictors were identified. Exploratory patterns suggested that transition behaviors (e.g., managing medications, making appointments independently) may merit further investigation as a moderator. We report common barriers (e.g., logistics), facilitators (e.g., provider and family support), and recommendations (e.g., earlier transition support).</div></div><div><h3>Discussion</h3><div>Our preliminary findings suggest that given the association between behaviors and transition readiness, pediatric primary care settings might benefit from using screening to prioritize which patients might benefit from enhanced transition support.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100126"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145976984","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transition and clinical outcomes among AYA with sickle cell disease","authors":"Chiamaka Nwachukwu,&nbsp;Melody Benton,&nbsp;Maissaa Janbain,&nbsp;Madison Blackstone,&nbsp;Justin Farge,&nbsp;Yue Ming,&nbsp;Vivien Sheehan","doi":"10.1016/j.hctj.2026.100146","DOIUrl":"10.1016/j.hctj.2026.100146","url":null,"abstract":"<div><h3>Background</h3><div>Transition clinics in sickle cell disease (SCD) were developed to address the gap in care and poor outcomes that frequently occur in adolescents and young adults (AYA) with SCD. Our retrospective study evaluated the outcomes of a multi-disciplinary SCD transition program at the Tulane University Sickle Cell Center of Southern Louisiana.</div></div><div><h3>Methods</h3><div>49 patients (39 who participated in the transition clinic, and 10 patients who transferred directly from pediatric to adult care) aged 18–25 with SCD who received care between January 2021 to November 2024 were included in the analysis. Socio-demographic data was collected as well as information on transition metrics, mental health comorbidities, and acute care utilization.</div></div><div><h3>Results</h3><div>At the time of analysis, 30.7% (n = 12) of patients in the transition clinic had transferred to adult care. Age ≥ 21, completing high school and attending 5 or more transition visits were significantly associated with successful adult care transfer completion (p &lt; 0.0001, p = 0.017, p = 0.0407). Across both groups, those with an established mental health diagnosis had significantly higher levels of hospital admissions (B = 5.55, SE = 1.67, p = .002). Moreover, compared to those who are in high school, those who completed high school had significantly lower levels of hospital admissions (B = −5.02, SE = 2.26, p = .03). There was no statistically significant difference in acute care utilization, medication compliance, or presence of SCD complications between both groups.</div></div><div><h3>Conclusion</h3><div>Higher levels of educational attainment and consistent engagement with transition programming positively impact successful adult care transfer in AYA with SCD. Mental health and wellbeing has a significant impact on morbidity and hospitalizations in AYA with SCD and represents an area for further research and intervention.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100146"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13315893/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148364629","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Virtual transition education of rural adolescents with congenital heart disease: A pilot study","authors":"R.N. Alyssa Chappell BScN ,&nbsp;R.N. Jody Gingrich BScN ,&nbsp;Jesse Batara MPH ,&nbsp;Adrienne H. Kovacs PhD ,&nbsp;Andrew S. Mackie MD, SM","doi":"10.1016/j.hctj.2026.100134","DOIUrl":"10.1016/j.hctj.2026.100134","url":null,"abstract":"<div><h3>Purpose</h3><div>Adolescents and young adults (AYA) living in rural communities have lower access to tertiary pediatric care than those in urban settings. However, all AYA with congenital heart disease (CHD) would benefit from transition programming to develop knowledge of their CHD and self-management skills in preparation for adult care. Previous studies have evaluated in-person delivery of transition programs. We sought to investigate the effectiveness of a virtual nurse-led pediatric-to-adult transition education program.</div></div><div><h3>Design and methods</h3><div>We conducted a prospective cohort study investigating the impact of virtual nurse-led transition education on individuals aged 16–25 with CHD who receive cardiology care in outreach cardiology clinics in Alberta, Canada. Individual teaching sessions were led by a cardiology nurse and delivered virtually in a single 1-hour session. Participants were also provided access to the iHeartChange transition website. A pre-post analysis was performed with comparisons between baseline, 1-month, and 6-month follow-up. Outcome measures were CHD knowledge (MyHeart Scale), self-efficacy (Generalized Self-Efficacy Scale), and self-management skills (Transition-Q).</div></div><div><h3>Results</h3><div>Twenty-five participants (56% female, mean age 17.7 ± 2.2 years) completed the virtual transition education and measures at baseline and both follow-ups. Improvements were observed across all outcomes from baseline to 1 month and from baseline to 6 months, except for self-efficacy, which showed an improvement between baseline and 6 months.</div></div><div><h3>Conclusions</h3><div>Nurse-led virtual transition education can be effective at improving rural AYA’s knowledge of their CHD and self-efficacy and self-management skills.</div></div><div><h3>Practice implications</h3><div>Pediatric cardiology programs should implement virtual nurse-led transition education for patients who live remotely.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100134"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147709714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A home base for young adults: evidence that a primary care-embedded multidisciplinary rheumatology transition clinic improved care utilization and engagement","authors":"Hannah R. Concannon ,&nbsp;Brian Halstater ,&nbsp;Sara Mazzarelli ,&nbsp;Natalie L. Tammen ,&nbsp;Anne Fields ,&nbsp;Keisha-Gaye N. O’Garo ,&nbsp;Karen R. McCain ,&nbsp;Jasmine Oesch ,&nbsp;John W. Ragsdale III ,&nbsp;Amanda M. Eudy ,&nbsp;Rebecca E. Sadun","doi":"10.1016/j.hctj.2026.100138","DOIUrl":"10.1016/j.hctj.2026.100138","url":null,"abstract":"<div><h3>Objective</h3><div>To determine care outcomes and utilization patterns for rheumatology patients seen in a multidisciplinary Young Adult Rheumatology Clinic (YARC) with embedded primary care, compared to patients directly transferred (DT) from pediatric to adult rheumatology clinics.</div></div><div><h3>Methods</h3><div>Data were collected two years prior to and three years after transfer for YARC and similarly aged DT patients. Difference-in-differences were calculated for show rates and acute care utilization before and after transfer. Vaccination and contraception uptake were compared. Trends in anxiety and depressive symptoms were examined for YARC patients using PHQ and GAD screeners. Semi-structured interviews were conducted with a subset of YARC patients to understand perceptions of the clinic’s impact.</div></div><div><h3>Results</h3><div>Twenty-two patients enrolled in the YARC were included in the study, 13 of whom have systemic lupus erythematosus (SLE), alongside 12 directly transferred SLE patients. The show rate for patients seen in the YARC increased by 14%, whereas the DT show rate decreased by 13%. Emergency department visits and hospital admissions increased post-transfer only in the DT group post-transfer. YARC patients were more likely to be up to-date on TDaP and HPV vaccines and to use highly effective contraception. Anxiety and depressive symptoms remained stable post-transfer in YARC patients. Patients also reported appreciating the efficiency benefits of the patient-centered medical home (PCMH) model inherent in the YARC.</div></div><div><h3>Conclusion</h3><div>Compared with traditional transfer to adult rheumatology, the YARC reduced acute care utilization and improved the no-show rate. Additionally, young adult rheumatology patients valued the PCMH model and were more likely to adhere to recommended preventive care practices.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100138"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148241440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ableism, ageism, and other biases in healthcare: The impact on young adult patients","authors":"Jemma-Tiffany Rosewater ,&nbsp;Sneha Dave ,&nbsp;Meg Didier ,&nbsp;Katherine Melton","doi":"10.1016/j.hctj.2026.100136","DOIUrl":"10.1016/j.hctj.2026.100136","url":null,"abstract":"<div><h3>Objectives</h3><div>Young adult patients, particularly those with chronic and rare conditions, face unique challenges related to bias and discrimination when navigating the healthcare system. Making up a minority of individuals with chronic conditions, young adult patients can face micro- and macro aggressions from healthcare professionals related to their age or abilities. The consequences of these biases have a profound impact on the physical and mental health of young adults with chronic conditions. The purpose of this brief report is to present the findings of a multidisciplinary roundtable discussion on the impacts of bias in healthcare on young adult patients.</div></div><div><h3>Methods</h3><div>In a roundtable hosted by the patient-led advocacy organization Generation Patient, medical professionals, researchers, and young adult patients came together to discuss how ableism, ageism, and other biases affect young adult patients and identify solutions for how the healthcare system can begin to address this pervasive issue.</div></div><div><h3>Results</h3><div>This roundtable proceedings document outlines patient and healthcare professional perspectives on the consequences of ableism, ageism and other types of bias faced by young adult patients, including dismissal, misdiagnosis, and power imbalances in the clinician-patient relationship.</div></div><div><h3>Conclusion</h3><div>In this roundtable discussion, participants shared their vision for a more just healthcare system for vulnerable patients, including but not limited to young adults.</div></div><div><h3>Practice implications</h3><div>By bringing together the voices of key partners, this roundtable serves as a call to action for clinicians and the healthcare system to work together to reduce the root causes and subsequent implications of bias and discrimination in healthcare.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100136"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147749110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parental experiences transitioning neurological impaired young adults to adult services","authors":"Hilary Noonan ,&nbsp;Rajamanikandan Savarimalai ,&nbsp;Pauline O’Reilly","doi":"10.1016/j.hctj.2026.100139","DOIUrl":"10.1016/j.hctj.2026.100139","url":null,"abstract":"<div><h3>Background</h3><div>Neonatal and paediatric care has been advancing. However, most young adults will need to transition from paediatric to adult healthcare services, which is more challenging and complex, especially for young adults with severe neurological impairment (SNI) due to significant healthcare needs. This study aimed to explore the experiences of parents of young adults with SNI who were part of the transition process of moving from children to adult healthcare services in an acute hospital setting.</div></div><div><h3>Method</h3><div>An interpretative descriptive qualitative design was used to establish the experiences of eleven parents of young adults with SNI on transitioning from paediatric to adult healthcare services in an acute hospital setting.</div></div><div><h3>Results</h3><div>Reflexive thematic analysis revealed a challenging and complex transition. Progress to adult healthcare services was a major shift in care. Additionally, challenges and worries about what is to come in relation to the transition and how to face the unknown situations. The parents of young adults with SNI involved in this study were not prepared or supported in moving from paediatric to adult healthcare services. This study provides in-depth insights into their transition experience.</div></div><div><h3>Conclusion</h3><div>Findings from this study suggest that a more thoughtful and planned approach to transition is needed for young adults with SNI.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100139"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147995608","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluating the implementation of self-management skill readiness assessment for adolescents and young adults with spina bifida","authors":"Megan Gallagher MPH,&nbsp;Rhonda G. Cady PhD, RN","doi":"10.1016/j.hctj.2026.100141","DOIUrl":"10.1016/j.hctj.2026.100141","url":null,"abstract":"<div><h3>Background</h3><div>Spina bifida (SB) is a complex condition affecting brain, bowel, bladder, cognitive, motor, and sensory functions. Evidence shows that adolescents and young adults (AYAs) with SB who master self-management of their complex condition experience better health outcomes. Assessment and support of AYA self-management using tools like the Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) is recommended by the Spina Bifida Association.</div></div><div><h3>Methods</h3><div>An explanatory sequential mixed-methods evaluation grounded in the RE-AIM framework investigated reach, effectiveness, adoption, and implementation of the TRAQ-SB into a multi-disciplinary specialty SB clinic. Medical record chart review quantified RE-AIM metrics and informed design of the qualitative strand, focus group sessions for three distinct ‘users’ of the TRAQ-SB: AYAs with SB, their parents, and their clinicians.</div></div><div><h3>Findings</h3><div>Self-management skill acquisition is a positive step towards AYA independence, but various factors impact this move. While most AYA with SB completed the TRAQ-SB, only 25% of clinicians documented discussion of the tool to inform the AYA plan of care. This indicates inadequate clinician adoption of the TRAQ-SB. Parents of AYA with SB that depend on others for self-care desire a different assessment and indicate reduced effectiveness of the TRAQ-SB. AYA with SB want the ‘gentleness and tenderness’ of the pediatric care system to extend to the adult care system.</div></div><div><h3>Conclusions</h3><div>Our evaluation provided insight into <em>who</em> completed the TRAQ-SB, <em>how</em> it was or was not used by clinicians, and the impact of internal and external environmental factors, providing support for self-management readiness assessment of AYAs with SB.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100141"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147995609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An e-health transition intervention for youth with brain-based disabilities: Pilot and feasibility results from a Randomized Controlled Trial","authors":"Jan Willem Gorter MD, PhD ,&nbsp;Ronen Rozenblum MPH, PhD ,&nbsp;Adrienne H. Kovacs PhD ,&nbsp;Khush H. Amaria PhD ,&nbsp;Lehana Thabane PhD ,&nbsp;Barb Galuppi BA ,&nbsp;Sonya Strohm MSc ,&nbsp;Linda Nguyen PhD ,&nbsp;Alicia Via-Dufresne Ley MBA ,&nbsp;Hana Alazem MD, MSc ,&nbsp;John Andersen MD, FRCPC, LMCC ,&nbsp;Rima Azar PhD ,&nbsp;Kerry Boyd MD ,&nbsp;Caitlin Cassidy MD, FRCP(C) ,&nbsp;C.J. Curran PhD ,&nbsp;Claire Dawe-McCord BHSc ,&nbsp;Shelley Doucet RN, BN, MScN, PhD ,&nbsp;Anne Fournier MD, FRCPC, FACC, FCCS ,&nbsp;Michael Frost ,&nbsp;Dilshad Kassam-Lallani NP ,&nbsp;Ariane Marelli MPH, MD","doi":"10.1016/j.hctj.2026.100144","DOIUrl":"10.1016/j.hctj.2026.100144","url":null,"abstract":"<div><h3>Background</h3><div>Youth with brain-based disabilities (BBD) need tailored support when preparing for adult healthcare. We originally designed a full randomized controlled trial (RCT) to test whether the MyREADY Transition™ BBD App improved transition readiness among youth aged 15–17 years with autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder, or spina bifida. Due to slow recruitment, the full RCT was halted and pivoted to a stand-alone pilot and feasibility trial.</div></div><div><h3>Methods</h3><div>This mixed method, patient-oriented pilot RCT (2019–2022, Canada) evaluated process, resource, management, and scientific feasibility, along with engagement with the App. Scientific feasibility focused on self-management outcomes (TRAQ and Transition-Q) among 43 youth (mean age 15.9 ± 0.8; 19 intervention, 24 control). Interviews and surveys provided additional perspectives on feasibility and user experience.</div></div><div><h3>Results</h3><div>Recruitment achieved only 43 of the planned 264 participants, and App engagement was modest. Almost all intervention participants logged into the App at least once, but on average completed less than one third of the curriculum. Qualitative findings suggested the App’s content was relevant and useful. Participants, caregivers, and healthcare providers emphasized the need for tailored, collaborative approaches to transition preparation.</div></div><div><h3>Conclusion</h3><div>Challenges included slow recruitment and limited sustained use of an e health intervention among youth with BBD. Despite the pivot, the trial generated pragmatic insights for future transition research. Youth and parent recommendations underscored the importance of customizable content and strategies that enhance motivation and engagement. Additional pilot work is needed to refine and optimize digital transition supports.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100144"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148241443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}