Pub Date : 2026-01-01DOI: 10.1016/j.hctj.2025.100126
Bridget N. Murphy PhD , Amy C. Lang PhD , Constance A. Mara PhD , Jessica T. Hinojosa MS , Elysia M. Smith BS , Thomas Elliott MD , Mary Carol Burkhardt MD, MHA , Margaret N. Jones MD, MS , Lori E. Crosby PsyD
Objective
Health care transition from pediatric to adult primary care is understudied, and factors associated with successful transfer to adult care are not well understood.
Methods
The current study surveyed a sample of patients (N = 110) of transition age (18 – 22, Mage = 19.42, SDage = 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.
Results
45 % of the sample (n = 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).
Discussion
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.
{"title":"Prevalence, predictors, and moderators of transfer in primary care","authors":"Bridget N. Murphy PhD , Amy C. Lang PhD , Constance A. Mara PhD , Jessica T. Hinojosa MS , Elysia M. Smith BS , Thomas Elliott MD , Mary Carol Burkhardt MD, MHA , Margaret N. Jones MD, MS , 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><sub><em>age</em></sub> = 19.42, <em>SD</em><sub><em>age</em></sub> = 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}
Pub Date : 2026-01-01DOI: 10.1016/j.hctj.2026.100128
Betsy Hopson PhD, MSHA , Kathy H. Huen MD, MPH, FAAP, FACS , Molly B. Richardson PhD, MPH , Rhonda G. Cady PhD, RN , Jennifer T. Queally PhD , Judy Thibadeau RN, MN , Ellen Fremion MD,FACP, FAAP
Introduction
Adolescents and young adults (AYA) with spina bifida (SB) face substantial challenges during the transition from pediatric to adult healthcare, including fragmented systems, limited adult provider availability, and gaps in self-management readiness. Despite national guidelines, little is known about how transition practices are implemented across the Spina Bifida Association (SBA) Clinical Care Partner (CCP) network. This study examined clinician perspectives on current practices, barriers, facilitators, and definitions of successful healthcare transition (HCT).
Methods
Using an explanatory sequential mixed methods design, we first conducted a 47-item survey with clinicians from SBA CCP clinics (n = 20/32; 62.5 % response rate). Survey items assessed clinic characteristics, HCT workflows, barriers, facilitators, success indicators, and resource needs. Quantitative results informed the second phase, a 120-minute multidisciplinary focus group (n = 12) conducted at the 2025 SBA Clinical Care Meeting. The transcript underwent inductive thematic analysis, and findings from both strands were integrated using a joint display.
Results
Quantitative findings revealed wide variability in HCT implementation: only 15 % of sites had fully implemented workflows; 40 % tracked successful transfer. Adult provider availability, insurance instability, and transportation were the most significant barriers. Clinics strongly endorsed the need for national support, particularly in the form of an adult-provider registry (80 %). Qualitative analysis expanded these findings, highlighting critical themes of early structured HCT planning, multidisciplinary coordination, systems-level fragmentation, and the emotional burden of HCT on families and clinicians. Integrated results showed convergence around three core components of successful transition--continuity, competence, and connection.
Discussion
Across the SBA network, HCT processes remain early in development, constrained by limited adult workforce capacity and inconsistent infrastructure. Findings identify clear, actionable targets for the national strategy, including early planning, multidisciplinary team support, centralized SBA resources, and strengthened outcome tracking to improve continuity and long-term adult engagement.
{"title":"Healthcare transition in spina bifida: A national mixed method study","authors":"Betsy Hopson PhD, MSHA , Kathy H. Huen MD, MPH, FAAP, FACS , Molly B. Richardson PhD, MPH , Rhonda G. Cady PhD, RN , Jennifer T. Queally PhD , Judy Thibadeau RN, MN , Ellen Fremion MD,FACP, FAAP","doi":"10.1016/j.hctj.2026.100128","DOIUrl":"10.1016/j.hctj.2026.100128","url":null,"abstract":"<div><h3>Introduction</h3><div>Adolescents and young adults (AYA) with spina bifida (SB) face substantial challenges during the transition from pediatric to adult healthcare, including fragmented systems, limited adult provider availability, and gaps in self-management readiness. Despite national guidelines, little is known about how transition practices are implemented across the Spina Bifida Association (SBA) Clinical Care Partner (CCP) network. This study examined clinician perspectives on current practices, barriers, facilitators, and definitions of successful healthcare transition (HCT).</div></div><div><h3>Methods</h3><div>Using an explanatory sequential mixed methods design, we first conducted a 47-item survey with clinicians from SBA CCP clinics (n = 20/32; 62.5 % response rate). Survey items assessed clinic characteristics, HCT workflows, barriers, facilitators, success indicators, and resource needs. Quantitative results informed the second phase, a 120-minute multidisciplinary focus group (n = 12) conducted at the 2025 SBA Clinical Care Meeting. The transcript underwent inductive thematic analysis, and findings from both strands were integrated using a joint display.</div></div><div><h3>Results</h3><div>Quantitative findings revealed wide variability in HCT implementation: only 15 % of sites had fully implemented workflows; 40 % tracked successful transfer. Adult provider availability, insurance instability, and transportation were the most significant barriers. Clinics strongly endorsed the need for national support, particularly in the form of an adult-provider registry (80 %). Qualitative analysis expanded these findings, highlighting critical themes of early structured HCT planning, multidisciplinary coordination, systems-level fragmentation, and the emotional burden of HCT on families and clinicians. Integrated results showed convergence around three core components of successful transition--continuity, competence, and connection.</div></div><div><h3>Discussion</h3><div>Across the SBA network, HCT processes remain early in development, constrained by limited adult workforce capacity and inconsistent infrastructure. Findings identify clear, actionable targets for the national strategy, including early planning, multidisciplinary team support, centralized SBA resources, and strengthened outcome tracking to improve continuity and long-term adult engagement.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100128"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146037959","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}
Pub Date : 2026-01-01DOI: 10.1016/j.hctj.2025.100127
Adam Greenberg MSN, RN , Lorene Schweig MS , Walter Faig PhD , Dava Szalda MD, MSHP , Ruth Lebet PhD , Elizabeth B. Froh PhD, RN
Background
Transition to adult healthcare systems is a complex process for young adults with chronic diseases and/or developmental disabilities. Our pediatric health system (PHS) created a referral-based multidisciplinary transition team (MTT) to support complex transfers, yet some patients continued to reengage post-transfer of care. We aimed to identify these patients, characterize patient-initiated reengagement trends, and assess factors associated with reengagement.
Methods
We conducted a retrospective observational study of patients referred to the MTT between July 1, 2017, and June 30, 2019, who had transitioned from pediatric to adult care providers by June 30, 2020. Data were extracted from the MTT clinical database and electronic health records.
Results
Of 73 eligible participants, 63 (86 %) reengaged with the PHS at large after transfer of care, accounting for 540 separate encounters. Reengagement encounters were categorized as anticipated (56 %, n = 302), unanticipated (33 %, n = 181), or specifically with the MTT (11 %, n = 57). Average time to first reengagement encounter differed significantly across groups (p < 0.0001): 28 days (MTT), 53 days (anticipated), and 99 days (unanticipated). No clinical or utilization variables were associated with time to first reengagement in unanticipated encounters or with the MTT. In anticipated encounters, reengagement was associated with prior cardiology care (HR=2.353, p = 0.0494), number of pediatric subspecialty providers (HR=1.01, p = 0.0309), and number of prescribed medications at transition (HR=1.05, p = 0.0477).
Conclusion
Reengagement with PHS post-transfer of care was common, even among patients transitioning with structured support from our MTT. These findings underscore the need for continued PHS support even after transferring to adult healthcare systems.
对于患有慢性疾病和/或发育障碍的年轻人来说，向成人医疗保健系统过渡是一个复杂的过程。我们的儿科卫生系统（PHS）创建了一个以转诊为基础的多学科转诊团队（MTT）来支持复杂的转诊，但一些患者在转诊后继续重新参与治疗。我们的目的是识别这些患者，描述患者发起的再接触趋势，并评估与再接触相关的因素。方法：我们对2017年7月1日至2019年6月30日期间转介MTT的患者进行了回顾性观察研究，这些患者在2020年6月30日之前从儿科转到成人护理提供者。数据提取自MTT临床数据库和电子健康记录。结果在73名符合条件的参与者中，63名（86% %）在转移护理后重新与小灵通进行了广泛的接触，占540次单独的接触。共事遇到被归类为预期(56 % n = 302),意外(33 % n = 181),或专门MTT(11 % n = 57)。第一次再接触的平均时间在各组之间差异显著（p <； 0.0001）：28天（MTT）， 53天（预期）和99天（未预期）。没有临床或使用变量与意外遭遇或MTT首次重新接触的时间相关。在预期的就诊中，再就诊与先前的心脏病学护理（HR=2.353, p = 0.0494）、儿科亚专科医生的数量（HR=1.01, p = 0.0309）和过渡期间的处方药物数量（HR=1.05, p = 0.0477）相关。结论：即使是在从我们的MTT过渡到结构化支持的患者中，转移护理后再参与PHS的情况也很常见。这些发现强调，即使在转移到成人医疗保健系统后，也需要继续提供小灵通支持。
{"title":"Transition backslide: Patterns of patient reengagement with a pediatric health system after a coordinated transfer to adult care","authors":"Adam Greenberg MSN, RN , Lorene Schweig MS , Walter Faig PhD , Dava Szalda MD, MSHP , Ruth Lebet PhD , Elizabeth B. Froh PhD, RN","doi":"10.1016/j.hctj.2025.100127","DOIUrl":"10.1016/j.hctj.2025.100127","url":null,"abstract":"<div><h3>Background</h3><div>Transition to adult healthcare systems is a complex process for young adults with chronic diseases and/or developmental disabilities. Our pediatric health system (PHS) created a referral-based multidisciplinary transition team (MTT) to support complex transfers, yet some patients continued to reengage post-transfer of care. We aimed to identify these patients, characterize patient-initiated reengagement trends, and assess factors associated with reengagement.</div></div><div><h3>Methods</h3><div>We conducted a retrospective observational study of patients referred to the MTT between July 1, 2017, and June 30, 2019, who had transitioned from pediatric to adult care providers by June 30, 2020. Data were extracted from the MTT clinical database and electronic health records.</div></div><div><h3>Results</h3><div>Of 73 eligible participants, 63 (86 %) reengaged with the PHS at large after transfer of care, accounting for 540 separate encounters. Reengagement encounters were categorized as anticipated (56 %, n = 302), unanticipated (33 %, n = 181), or specifically with the MTT (11 %, n = 57). Average time to first reengagement encounter differed significantly across groups (<em>p</em> < 0.0001): 28 days (MTT), 53 days (anticipated), and 99 days (unanticipated). No clinical or utilization variables were associated with time to first reengagement in unanticipated encounters or with the MTT. In anticipated encounters, reengagement was associated with prior cardiology care (HR=2.353, <em>p</em> = 0.0494), number of pediatric subspecialty providers (HR=1.01, <em>p</em> = 0.0309), and number of prescribed medications at transition (HR=1.05, <em>p</em> = 0.0477).</div></div><div><h3>Conclusion</h3><div>Reengagement with PHS post-transfer of care was common, even among patients transitioning with structured support from our MTT. These findings underscore the need for continued PHS support even after transferring to adult healthcare systems.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100127"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145938876","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}
Pub Date : 2025-12-03DOI: 10.1016/j.hctj.2025.100124
Susan Shanske MSW , Abigail Ross LICSW, MPH, PhD , Sarah Spence MD, PhD , Ahmet Uluer DO, MPH
Objective
Individuals with neurodevelopmental disabilities (NDD) encounter significant challenges during pediatric to adult healthcare transition (HCT). In response, a statewide learning collaborative was designed to improve pediatric-to-adult HCT for individuals with NDD using the Model for Improvement and the Six Core Elements of GotTransition.
Methods
Teams including providers from pediatric and adult practices along with family partners participated in a learning collaborative comprising two phases (Phase 1: Oct 2021–May 2022; Phase 2: Nov 2022–May 2023). Activities included monthly team meetings, learning sessions, plan-do-study-act (PDSA) cycles, and use of a transition-tracking registry. Outcomes of participation, satisfaction and usefulness of activities, resources generated, and number of patient transfers were evaluated using self-report surveys at the conclusion of each phase. Lessons learned were shared at a summit at the end of the second phase.
Results
Eight teams (5 primary care, 3 specialty) enrolled in the first phase while five continued in Phase 2. Throughout both phases, teams employed PDSA cycles to create provider- and family-facing resources, integrated registry components into existing systems, and engaged in monthly meetings and learning sessions. Although no team used the registry as designed, all five teams participating in Phase 2 incorporated its elements to strengthen transition workflows. Participant satisfaction was high across both phases (mean ratings >4.1/5), and summit evaluations were overwhelmingly positive. Self-assessments showed modest improvements in transition practices, with persistent challenges in tracking, transfer completion, and adult integration. By phase two, 49 patients were reported as transferred or in process, with outcomes varying by team.
Discussion
A structured, statewide learning collaborative was feasible, highly engaging, and produced patient movement toward adult care. The results suggest that this collaborative model with facilitators embedded within teams can advance healthcare transition practices for individuals with NDD. In addition to the importance of garnering support from leadership, keystones of learning collaborative success include celebrating accomplishments, allocating dedicated resources to data collection and monitoring, embracing flexibility, and addressing resource shortcomings in the adult system of care. Future learning collaboratives designed to improve care transitions for patients with NDD would benefit from incorporating these considerations and addressing these foci explicitly.
{"title":"Improving healthcare transitions for neurodevelopmental disabilities: Statewide learning collaborative outcomes","authors":"Susan Shanske MSW , Abigail Ross LICSW, MPH, PhD , Sarah Spence MD, PhD , Ahmet Uluer DO, MPH","doi":"10.1016/j.hctj.2025.100124","DOIUrl":"10.1016/j.hctj.2025.100124","url":null,"abstract":"<div><h3>Objective</h3><div>Individuals with neurodevelopmental disabilities (NDD) encounter significant challenges during pediatric to adult healthcare transition (HCT). In response, a statewide learning collaborative was designed to improve pediatric-to-adult HCT for individuals with NDD using the Model for Improvement and the Six Core Elements of GotTransition.</div></div><div><h3>Methods</h3><div>Teams including providers from pediatric and adult practices along with family partners participated in a learning collaborative comprising two phases (Phase 1: Oct 2021–May 2022; Phase 2: Nov 2022–May 2023). Activities included monthly team meetings, learning sessions, plan-do-study-act (PDSA) cycles, and use of a transition-tracking registry. Outcomes of participation, satisfaction and usefulness of activities, resources generated, and number of patient transfers were evaluated using self-report surveys at the conclusion of each phase. Lessons learned were shared at a summit at the end of the second phase.</div></div><div><h3>Results</h3><div>Eight teams (5 primary care, 3 specialty) enrolled in the first phase while five continued in Phase 2. Throughout both phases, teams employed PDSA cycles to create provider- and family-facing resources, integrated registry components into existing systems, and engaged in monthly meetings and learning sessions. Although no team used the registry as designed, all five teams participating in Phase 2 incorporated its elements to strengthen transition workflows. Participant satisfaction was high across both phases (mean ratings >4.1/5), and summit evaluations were overwhelmingly positive. Self-assessments showed modest improvements in transition practices, with persistent challenges in tracking, transfer completion, and adult integration. By phase two, 49 patients were reported as transferred or in process, with outcomes varying by team.</div></div><div><h3>Discussion</h3><div>A structured, statewide learning collaborative was feasible, highly engaging, and produced patient movement toward adult care. The results suggest that this collaborative model with facilitators embedded within teams can advance healthcare transition practices for individuals with NDD. In addition to the importance of garnering support from leadership, keystones of learning collaborative success include celebrating accomplishments, allocating dedicated resources to data collection and monitoring, embracing flexibility, and addressing resource shortcomings in the adult system of care. Future learning collaboratives designed to improve care transitions for patients with NDD would benefit from incorporating these considerations and addressing these foci explicitly.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"4 ","pages":"Article 100124"},"PeriodicalIF":0.0,"publicationDate":"2025-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145658482","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}
Pub Date : 2025-01-01DOI: 10.1016/j.hctj.2024.100092
Albert C. Hergenroeder
Albert C. Hergenroeder, MD, Professor of Pediatrics, Chief, Adolescent Medicine and Sports Medicine, Baylor College of Medicine The paper is based on the author’s opening address for the 25th annual Chronic Illness and Disability: Transition from Pediatric to Adult-based care conference at Baylor College of Medicine/Texas Children’s Hospital conference delivered October 10, 2024
Albert C. Hergenroeder，医学博士，贝勒医学院儿科教授，青少年医学和运动医学主任。这篇论文是基于作者在贝勒医学院/德克萨斯儿童医院会议于2024年10月10日举行的第25届年度慢性病和残疾：从儿科到成人护理会议的开幕致辞
{"title":"Reflections on directing 25 years of the annual transition conference","authors":"Albert C. Hergenroeder","doi":"10.1016/j.hctj.2024.100092","DOIUrl":"10.1016/j.hctj.2024.100092","url":null,"abstract":"<div><div>Albert C. Hergenroeder, MD, Professor of Pediatrics, Chief, Adolescent Medicine and Sports Medicine, Baylor College of Medicine The paper is based on the author’s opening address for the 25th annual Chronic Illness and Disability: Transition from Pediatric to Adult-based care conference at Baylor College of Medicine/Texas Children’s Hospital conference delivered October 10, 2024</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100092"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143141995","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}
Adults with severe and profound intellectual disabilities (SPIDs) often encounter more significant healthcare needs than those without disabilities. People with SPIDs are more likely to have mobility impairments (MIs), yet little is known about physical activity (PA) experiences among those with SPIDs and MIs once they transition out of pediatric and school-based settings. This study explores the experience of PA in adults with SPIDs and MIs based on clinician perspectives.
Methods
Eight clinicians engaged in a semi-structured interview and described their experiences with PA in adults with SPIDs/MIs. Interviews were analyzed to determine common themes, and a reflexivity journal and field notes were used to corroborate and supplement findings. Data was organized according to the 5 socio-ecological model (SEM) levels and 16 a priori themes (1) intrapersonal: attitudes, physical factors, knowledge, and values, (2) interpersonal: supports outside the home, supports within the home, and home environment considerations, (3) organizational: disability-inclusive organizations, academic institutions, and medical institutions, (4) community: environment and priorities, and (5) policy: home and community-based services (HCBS), financial, academic and programming, and accessibility policies. Clinician-identified barriers and facilitators to PA were grouped under these 16 themes.
Results
The 5 most prevalent PA facilitators included (1) PA preferences as uniquely individualized, (2) organizations providing PA for adults with multiple disabilities, (3) building, outdoor, and transportation accessibility, (4) the importance of allyship and socialization among those with SPIDs/MIs and between caregivers, and (5) advocacy for promoting monies toward prevention instead of illness. The 5 most prevalent barriers to PA were (1) building, outdoor, and transportation inaccessibility, (2) necessity of education on needs and opportunities for PA, (3) diagnosis, bodily structure, weakness, or pain in adults with SPIDs/MIs, (4) lack of competitive billing structure to support PA programs or clinician reimbursement, and (5) lack of HCBS education and support.
Implications
Recognizing the interplay of each SEM level and factors influencing PA engagement may improve access and health outcomes among adults with SPIDs/MIs. Clinicians play a significant role in assessing, educating, and promoting PA opportunities for people with disabilities as they transition into and age within adult and community settings.
{"title":"Pushing forward: Understanding physical activity in adults with medical complexity","authors":"Valerie Perkoski Ph.D., RD , Mary Shotwell Ph.D., OTR/L, FAOTA, NBC-HWC , Charlotte Chatto PT, Ph.D., NCS , Judy Chandler Ph.D.","doi":"10.1016/j.hctj.2025.100102","DOIUrl":"10.1016/j.hctj.2025.100102","url":null,"abstract":"<div><h3>Background</h3><div>Adults with severe and profound intellectual disabilities (SPIDs) often encounter more significant healthcare needs than those without disabilities. People with SPIDs are more likely to have mobility impairments (MIs), yet little is known about physical activity (PA) experiences among those with SPIDs and MIs once they transition out of pediatric and school-based settings. This study explores the experience of PA in adults with SPIDs and MIs based on clinician perspectives.</div></div><div><h3>Methods</h3><div>Eight clinicians engaged in a semi-structured interview and described their experiences with PA in adults with SPIDs/MIs. Interviews were analyzed to determine common themes, and a reflexivity journal and field notes were used to corroborate and supplement findings. Data was organized according to the 5 socio-ecological model (SEM) levels and 16 a priori themes (1) intrapersonal: attitudes, physical factors, knowledge, and values, (2) interpersonal: supports outside the home, supports within the home, and home environment considerations, (3) organizational: disability-inclusive organizations, academic institutions, and medical institutions, (4) community: environment and priorities, and (5) policy: home and community-based services (HCBS), financial, academic and programming, and accessibility policies. Clinician-identified barriers and facilitators to PA were grouped under these 16 themes.</div></div><div><h3>Results</h3><div>The 5 most prevalent PA facilitators included (1) PA preferences as uniquely individualized, (2) organizations providing PA for adults with multiple disabilities, (3) building, outdoor, and transportation accessibility, (4) the importance of allyship and socialization among those with SPIDs/MIs and between caregivers, and (5) advocacy for promoting monies toward prevention instead of illness. The 5 most prevalent barriers to PA were (1) building, outdoor, and transportation inaccessibility, (2) necessity of education on needs and opportunities for PA, (3) diagnosis, bodily structure, weakness, or pain in adults with SPIDs/MIs, (4) lack of competitive billing structure to support PA programs or clinician reimbursement, and (5) lack of HCBS education and support.</div></div><div><h3>Implications</h3><div>Recognizing the interplay of each SEM level and factors influencing PA engagement may improve access and health outcomes among adults with SPIDs/MIs. Clinicians play a significant role in assessing, educating, and promoting PA opportunities for people with disabilities as they transition into and age within adult and community settings.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100102"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143844633","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}
Pub Date : 2025-01-01DOI: 10.1016/j.hctj.2025.100108
Diane V. Murrell , Cassandra J. Enzler , Lauren Bretz , Beth H. Garland , Albert C. Hergenroeder , Christine Markham , Constance M. Wiemann
Background
This study sought to examine how adolescents and young adults with special health care needs (AYA) prepare for managing medical insurance (private and public) as an adult and the role of insurance in locating an adult provider and engaging in care.
Methods
Twenty-eight AYA aged 18–24 years with renal, inflammatory bowel, or rheumatologic diseases completed individual semi-structured interviews designed to evaluate the impact of insurance (private vs. public) on their health care transition experiences. An interdisciplinary team of coders analyzed transcripts using The Framework Method.
Results
Three themes emerged: continuum of accepting health insurance responsibility; the impact of insurance on managing health while transitioning to an adult provider; and how insurance systems affect transition. AYA described a continuum of the adolescent increasing health insurance responsibility, which was paralleled by their parent/caregiver’s continuum of decreasing insurance responsibility. Both publicly and privately insured AYA faced difficulties in transition related to insurance and reported that insurance was a key deciding factor in locating providers and centers to receive care. Regardless of insurance type, some AYA also described financial difficulties affording care.
Conclusions
Health insurance is a complex system that affects AYA’s ability to manage their health and transition to adult-based care. Evidence-based interventions to improve AYA and parent/caregiver health literacy knowledge and skills about health insurance prior to transition to adult-based care are needed. Improvement in health insurance literacy could improve transition readiness for entering adult care, which could in turn improve health outcomes.
{"title":"The impact of insurance on adolescent transition to adult care","authors":"Diane V. Murrell , Cassandra J. Enzler , Lauren Bretz , Beth H. Garland , Albert C. Hergenroeder , Christine Markham , Constance M. Wiemann","doi":"10.1016/j.hctj.2025.100108","DOIUrl":"10.1016/j.hctj.2025.100108","url":null,"abstract":"<div><h3>Background</h3><div>This study sought to examine how adolescents and young adults with special health care needs (AYA) prepare for managing medical insurance (private and public) as an adult and the role of insurance in locating an adult provider and engaging in care.</div></div><div><h3>Methods</h3><div>Twenty-eight AYA aged 18–24 years with renal, inflammatory bowel, or rheumatologic diseases completed individual semi-structured interviews designed to evaluate the impact of insurance (private vs. public) on their health care transition experiences. An interdisciplinary team of coders analyzed transcripts using The Framework Method.</div></div><div><h3>Results</h3><div>Three themes emerged: continuum of accepting health insurance responsibility; the impact of insurance on managing health while transitioning to an adult provider; and how insurance systems affect transition. AYA described a continuum of the adolescent increasing health insurance responsibility, which was paralleled by their parent/caregiver’s continuum of decreasing insurance responsibility. Both publicly and privately insured AYA faced difficulties in transition related to insurance and reported that insurance was a key deciding factor in locating providers and centers to receive care. Regardless of insurance type, some AYA also described financial difficulties affording care.</div></div><div><h3>Conclusions</h3><div>Health insurance is a complex system that affects AYA’s ability to manage their health and transition to adult-based care. Evidence-based interventions to improve AYA and parent/caregiver health literacy knowledge and skills about health insurance prior to transition to adult-based care are needed. Improvement in health insurance literacy could improve transition readiness for entering adult care, which could in turn improve health outcomes.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100108"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144329775","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}
Approximately 10–30 % of the youth (aged 15–24) have a diagnosed chronic medical condition. Effective transition from pediatric to adult care is thus essential for disease management. The growing interest in the transition of young people with chronic medical conditions has led to numerous international studies revealing diverse and often inadequate transition practices. Thus, the aim was to gain a new understanding and deeper insight into youths´ experiences of their transition from paediatric to adult care.
Methods
Utilizing the meta-ethnographic method by Noblit and Hare, a structured literature search
was conducted in CINAHL and PubMed.
Results
Ten articles were included. The meta-ethnography found that youth – despite their chronic medical condition – define themselves as primarily young and secondarily chronically ill. Furthermore, youth transitioning to adult care are being the Captain of Their Own Life and hence stand alone with the responsibility of managing their illness, lacking the competence to master it fully, and facing an unorganized healthcare system that does not adequately support their needs. Thus, youth find they are Navigating in the Dark.
Conclusion
Adopting a rigorously systematic approach to conducting a meta-ethnography provides new and valuable knowledge into the transition process from pediatric to adult care. Youth with chronic medical conditions encounter multiple challenges in their transition from pediatric to adult care, which has not systematically been integrated into patient care pathways in clinical practice. This review provides a new understanding of youths’ transition experiences, on which further research regarding the organization of effective and evidence-based process can be based.
{"title":"From pediatrics to adult care – Experiences of transition among youth with a chronic medical condition: A meta-ethnography","authors":"Bettina Trettin RN, MScN, PhD (Assistant Professor) , Nina Hyltoft RN, MScN , Hanne Agerskov RN, MScN, PhD (Professor) , Charlotte Nielsen RN, MScN, PhD (Assistant Professor) , Christina Egmose Frandsen RN, MScN, PhD (Assistant Professor)","doi":"10.1016/j.hctj.2025.100118","DOIUrl":"10.1016/j.hctj.2025.100118","url":null,"abstract":"<div><h3>Background</h3><div>Approximately 10–30 % of the youth (aged 15–24) have a diagnosed chronic medical condition. Effective transition from pediatric to adult care is thus essential for disease management. The growing interest in the transition of young people with chronic medical conditions has led to numerous international studies revealing diverse and often inadequate transition practices. Thus, the aim was to gain a new understanding and deeper insight into youths´ experiences of their transition from paediatric to adult care.</div></div><div><h3>Methods</h3><div>Utilizing the meta-ethnographic method by Noblit and Hare, a structured literature search</div><div>was conducted in CINAHL and PubMed.</div></div><div><h3>Results</h3><div>Ten articles were included. The meta-ethnography found that youth – despite their chronic medical condition – define themselves as primarily young and secondarily chronically ill. Furthermore, youth transitioning to adult care are being the Captain of Their Own Life and hence stand alone with the responsibility of managing their illness, lacking the competence to master it fully, and facing an unorganized healthcare system that does not adequately support their needs. Thus, youth find they are Navigating in the Dark.</div></div><div><h3>Conclusion</h3><div>Adopting a rigorously systematic approach to conducting a meta-ethnography provides new and valuable knowledge into the transition process from pediatric to adult care. Youth with chronic medical conditions encounter multiple challenges in their transition from pediatric to adult care, which has not systematically been integrated into patient care pathways in clinical practice. This review provides a new understanding of youths’ transition experiences, on which further research regarding the organization of effective and evidence-based process can be based.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100118"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144902462","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}
Pub Date : 2025-01-01DOI: 10.1016/j.hctj.2025.100123
Cecily L. Betz PhD, RN, FAAN (Editor-in-Chief)
{"title":"Editorial: Advancing the science and practice of health care transition","authors":"Cecily L. Betz PhD, RN, FAAN (Editor-in-Chief)","doi":"10.1016/j.hctj.2025.100123","DOIUrl":"10.1016/j.hctj.2025.100123","url":null,"abstract":"","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100123"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145684752","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}
Pub Date : 2025-01-01DOI: 10.1016/j.hctj.2025.100099
Christina M. Sharkey , Frances Cooke , Taylor M. Dattilo , Alexandra M. DeLone , Larry L. Mullins
Objective
Transitioning to independent self-management is an observed challenge for emerging adults with chronic medical conditions (CMCs). Strong healthcare management skills are linked with better health-related quality of life (HRQoL). Social problem-solving skills also contribute to HRQoL, but limited research exists on the role of these skills among emerging adults with CMCs. Therefore, the current study examines the potential mediating role of problem-solving abilities between healthcare management skills and HRQoL among emerging adults with CMCs.
Methods
Emerging adults (N = 279; Mean Age=19.37, SD=1.33; 84.9 % Female; 79.2 % White; 26.9 % first generation student) with a CMC completed online measures of demographics, transition readiness, social problem-solving, and HRQoL. A path analysis estimated the direct and indirect effects of transition readiness on HRQoL, with demographic and illness-related covariates (e.g., sex, illness controllability, COVID time).
Results
The overall path analysis was significant (p < 0.001) and accounted for 28.0 % of the variance in mental (M=-1.46, SD=1.12) and 20.5 % of the variance in physical HRQoL (M=-0.65, SD=0.96). Transition readiness had a significant indirect effect through dysfunctional problem-solving skills on mental (β=0.07, SE=0.03, p = 0.02) and physical HRQoL (β=0.04 SE=0.02, p = 0.04). Constructive problem-solving did not mediate the relationships (ps>0.05).
Conclusions
Findings indicate that dysfunctional problem-solving may impede emerging adults’ ability to effectively apply healthcare management skills, and interventions that reduce dysfunctional problem-solving may be needed to improve HRQoL. College campuses may be a suitable environment for providing problem-solving training, and future research should explore opportunities to engage these communities in healthcare transition support.
{"title":"The role of social problem-solving in emerging adult healthcare transition","authors":"Christina M. Sharkey , Frances Cooke , Taylor M. Dattilo , Alexandra M. DeLone , Larry L. Mullins","doi":"10.1016/j.hctj.2025.100099","DOIUrl":"10.1016/j.hctj.2025.100099","url":null,"abstract":"<div><h3>Objective</h3><div>Transitioning to independent self-management is an observed challenge for emerging adults with chronic medical conditions (CMCs). Strong healthcare management skills are linked with better health-related quality of life (HRQoL). Social problem-solving skills also contribute to HRQoL, but limited research exists on the role of these skills among emerging adults with CMCs. Therefore, the current study examines the potential mediating role of problem-solving abilities between healthcare management skills and HRQoL among emerging adults with CMCs.</div></div><div><h3>Methods</h3><div>Emerging adults (N = 279; Mean Age=19.37, SD=1.33; 84.9 % Female; 79.2 % White; 26.9 % first generation student) with a CMC completed online measures of demographics, transition readiness, social problem-solving, and HRQoL. A path analysis estimated the direct and indirect effects of transition readiness on HRQoL, with demographic and illness-related covariates (e.g., sex, illness controllability, COVID time).</div></div><div><h3>Results</h3><div>The overall path analysis was significant (<em>p</em> < 0.001) and accounted for 28.0 % of the variance in mental (M=-1.46, SD=1.12) and 20.5 % of the variance in physical HRQoL (M=-0.65, SD=0.96). Transition readiness had a significant indirect effect through dysfunctional problem-solving skills on mental (β=0.07, SE=0.03, <em>p</em> = 0.02) and <em>p</em>hysical HRQoL (β=0.04 SE=0.02, <em>p</em> = 0.04). Constructive problem-solving did not mediate the relationships (<em>ps</em>>0.05).</div></div><div><h3>Conclusions</h3><div>Findings indicate that dysfunctional problem-solving may impede emerging adults’ ability to effectively apply healthcare management skills, and interventions that reduce dysfunctional problem-solving may be needed to improve HRQoL. College campuses may be a suitable environment for providing problem-solving training, and future research should explore opportunities to engage these communities in healthcare transition support.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100099"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143777639","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}
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