Health Care Transitions最新文献

{"title":"A medical assistant-facilitated transition activity in a pediatric cardiology clinic","authors":"Debora Burger ,&nbsp;Quin E. Denfeld ,&nbsp;Karen Uzark ,&nbsp;Patrick D. Evers ,&nbsp;Andrew W. McHill ,&nbsp;Pam Ward ,&nbsp;Reem Hasan","doi":"10.1016/j.hctj.2024.100042","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100042","url":null,"abstract":"<div><h3>Background</h3><p>Formal transition programs prepare pediatric patients with congenital heart disease (CHD) for successful lifelong management of their disease. Conducting transition program activities in pediatric cardiology clinics can be a challenge if there are limited resources. The purpose of this study was to test the effectiveness of a medical assistant (MA)-facilitated transition activity in increasing documentation of transition discussions and characterize staff acceptability of this intervention.</p></div><div><h3>Method</h3><p>We performed a prospective exploratory study over a five-week period. CHD patients aged 13 and older presenting for routine pediatric cardiology follow-up appointments received a prompt from the MA to view a list of 17 transition topics from which to choose topics for discussion with the pediatric cardiologist during the clinic visit. Historical control group data were collected from the same period, two years prior. We compared the presence of documentation of transition discussions between the transition activity and control group using comparative statistics. Staff acceptability was assessed using the revised Treatment Acceptability and Preference Questionnaire.</p></div><div><h3>Results</h3><p>A total of 14 staff members participated in the transition activity involving 29 patients. Significantly more transition discussions were documented in the transition activity group compared with the historic control group (<em>p</em> &lt; 0.001). Patients discussed more transition topics (median = 5, Interquartile range 2–7) than what was requested (median = 2, Interquartile range 1–4). All staff rated the activity as acceptable (ranging from ‘somewhat acceptable’ to ‘very much acceptable’) and were willing to continue after the study ended.</p></div><div><h3>Conclusion</h3><p>Having an MA-facilitated transition activity increased documentation of transition discussions in the pediatric cardiology clinic. Staff were accepting and in favor of continuing this low-resource activity.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100042"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000023/pdfft?md5=60d920aeb49fa516fce056a79d13a231&pid=1-s2.0-S2949923224000023-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139493442","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":"Thematic analysis of COVID-19's impacts on transitions among emerging adults","authors":"Keely H. Bieniak ,&nbsp;Helen Bedree ,&nbsp;Nicole Geanous ,&nbsp;Rachel Neff Greenley ,&nbsp;Steven A. Miller ,&nbsp;Joanna Buscemi ,&nbsp;Susan T. Tran","doi":"10.1016/j.hctj.2024.100052","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100052","url":null,"abstract":"<div><h3>Objectives</h3><p>This study explored how the COVID-19 pandemic impacted emerging adults. Previous COVID-19 research with this age demographic has focused on specific facets of life transitions (e.g., academic or economic stress) but does not consider the interrelatedness of these life domains. This project fills this gap by allowing participants to report on any aspects of their life to better understand frequent challenges with and experiences that may have helped with managing “the new normal” of the COVID-19 pandemic amidst typical transitions of emerging adulthood.</p></div><div><h3>Methods</h3><p>Qualitative and quantitative data gathered in July 2020 (<em>n</em> = 145) and January 2021 (<em>n</em> = 143) as part of a longitudinal study of emerging adults (18–24 years) who were enrolled at a Midwestern United States University at baseline were analyzed to explore impacts of COVID-19, particularly in relation to stress.</p></div><div><h3>Results</h3><p>Qualitative results demonstrate a range of negative COVID-19 effects, including health challenges and relationship strain. Interestingly, positive effects were also reported, including allocating more time for hobbies and spending quality time with loved ones. Quantitative findings indicate that COVID-19 distress did not increase over time, but perceived exposure to pandemic effects significantly increased. A general perceived distress measure demonstrated a slight decrease in distress over time, suggesting a potential adjustment to ‘the new normal.’</p></div><div><h3>Discussion</h3><p>COVID-19 impacted multiple domains of typical developmental transitions for many emerging adults in our sample. Individual qualitative reports demonstrate uniquely personal impacts of COVID-19, while thematic trends appear across responses (e.g., relationship strain). Health care providers must consider how these impacts influence the wellbeing of emerging adults with whom they work as the pandemic continues to evolve.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100052"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000126/pdfft?md5=d6273819685378738f7171d7336fd092&pid=1-s2.0-S2949923224000126-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139935934","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":"Amplifying adolescent and emerging adult voices: Development of a pediatric-to-adult transition research advisory council","authors":"Zoya Punjwani ,&nbsp;Megan Patton ,&nbsp;Brooke Allemang ,&nbsp;Cassandra Chisholm ,&nbsp;Mica Pabia ,&nbsp;Sarah Mooney ,&nbsp;Paul Siska ,&nbsp;Laurel Ryan ,&nbsp;Daniella San Martin-Feeney ,&nbsp;Ken Pfister ,&nbsp;Andrew Mackie ,&nbsp;Gina Dimitropoulos ,&nbsp;Susan Samuel","doi":"10.1016/j.hctj.2024.100058","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100058","url":null,"abstract":"<div><h3>Background</h3><p>Adolescents and emerging adults (AEA) with chronic health conditions may face numerous challenges when undergoing the transition from pediatric to adult health care. Despite the need for engagement with AEA in health research, little is known about how researchers operationalize this engagement. In an effort to enhance transparency in the practices of patient engagement, this commentary details the process of developing a pediatric-adult transition-specific youth advisory council in Alberta: the Transition Research Advisory Council (TRAC).</p></div><div><h3>Objectives</h3><p>We provide an overview of AEA engagement in health research and detail TRAC’s recruitment and onboarding strategies. Moreover, TRAC members provided reflections on their motivations and experiences during the onboarding process.</p></div><div><h3>Key recommendations</h3><p>This commentary provides key recommendations for AEA council development, emphasizing equity, diversity, and inclusion principles, optimizing compensation plans, adopting an iterative engagement approach, fostering capacity-building and mentorship, and promoting empowerment in decision-making.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100058"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000187/pdfft?md5=3b1235d3195984fb899cb989604351be&pid=1-s2.0-S2949923224000187-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140295875","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":"The lived experience of young adults emotionally labouring with type 1 diabetes: Findings of an interpretive phenomenological study","authors":"Alexandra Jocic ,&nbsp;Karen A. Cook ,&nbsp;Gwen R. Rempel","doi":"10.1016/j.hctj.2024.100061","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100061","url":null,"abstract":"<div><h3>Background</h3><p>Type 1 diabetes is a life-long metabolic illness. Typically diagnosed in childhood, adolescence, and young adulthood, this diagnosis is often associated with increased psychological vulnerability. Diabetes distress is associated with the daily demands of managing complicated medication and dietary regimes that are emotionally, psychologically, and physically taxing. Emotional labour may be required to manage or negotiate the demands of diabetes distress. Emotional labour is the process of managing feelings and expressions that come with fulfilling the emotional demands of necessary tasks or roles. However, the meaning of emotional labour has not been explored for young people living with Type 1 diabetes.</p></div><div><h3>Methods</h3><p>Using Interpretive Phenomenological Analysis, we conducted this study to explore the lived experience of emotional labour for young adults living with Type 1 diabetes in adulthood.</p></div><div><h3>Results</h3><p>Themes were identified that constituted sources of emotional labour inherent to participants’ experiences of diabetes management. The over-expenditure of emotional labour suggests profound implications for mental health outcomes and diabetes distress levels, and participant experiences revealed institutionally imbedded ableism that elicited further expenditure of emotional labour.</p></div><div><h3>Conclusion</h3><p>The findings suggest that reconsideration of educational frameworks and praxis within diabetes healthcare may alleviate emotional labour and diabetes distress.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100061"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000217/pdfft?md5=6c43b5e6759883509cb8b3e569b564a9&pid=1-s2.0-S2949923224000217-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141487061","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":"Transition to adulthood: Experience of Japanese youth with spina bifida","authors":"Shiho Murayama ,&nbsp;Jennifer J. Doering ,&nbsp;Kathleen J. Sawin","doi":"10.1016/j.hctj.2024.100080","DOIUrl":"10.1016/j.hctj.2024.100080","url":null,"abstract":"<div><h3>Background</h3><div>Emerging adults with spina bifida have complex developmental and health care needs. Improvement in healthcare means there is greater interest in understanding and supporting the transition needs of children with spina bifida to adulthood. However, the experiences during transition for emerging adults with spina bifida in Japan remain unknown. The purpose of this study was to describe the experiences of transition to adulthood for emerging adults with spina bifida in Japan.</div></div><div><h3>Methods</h3><div>Qualitative descriptive design was used to explore experiences of emerging adults with spina bifida. Eight emerging adults between 20 and 29 years participated in semi-structured interviews.</div></div><div><h3>Results</h3><div>Six core themes were identified: (a) struggling with employment, (b) finding the meaning of “becoming an adult”, (c) learning to implement self-management, (d) proceeding with and worrying over adult health care, (e) establishing and maintaining relationships with friends, and (f) broadening scope of experiences.</div></div><div><h3>Conclusions</h3><div>This study contributed to identification of both challenges and positive aspects in experiences of emerging adults with spina bifida in Japan. Participants shared the unique perspective of how to “become an adult” as a person with spina bifida in Japan. Ever-present were participants’ experiences of struggling during transition to adulthood, especially when trying to find a job, establishing relationships with friends, and making the transition to adult health care. The challenges participants in this study faced striving to achieve adulthood-related milestones and transition to adult health care suggest that expansion of support and health care initiatives that reflects the Japanese social context are needed.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100080"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142652192","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":"Assessing mental health transition readiness in youth with medical conditions","authors":"Wendy N. Gray ,&nbsp;Lauren Partain ,&nbsp;Erin Benekos ,&nbsp;Carlos Konishi ,&nbsp;Adrianne Alpern ,&nbsp;Michael Weiss","doi":"10.1016/j.hctj.2024.100077","DOIUrl":"10.1016/j.hctj.2024.100077","url":null,"abstract":"<div><h3>Purpose</h3><div>Many youth with medical conditions also have co-occurring mental health concerns. Limited attention has been given to the mental health transition needs of these youth. We explore bringing transition readiness assessment into the mental health care of youth with co-occurring disorders.</div></div><div><h3>Design and Methods</h3><div>Mental health transition readiness was assessed in transition-aged youth seen in a hospital-based specialty mental health clinic for youth with co-occurring medical and mental health conditions. Patients and/or parents reported on their awareness of transition policies and experiences. Clinicians formally assessed youth mental health transition readiness using the TR_XANSITION Index_.</div></div><div><h3>Results</h3><div>Only 46.53 % of families knew about the clinic’s transition policy. Less than 1/3 reported their provider ever mentioning transition and only 6.93 % knew the deadline for transfer to adult care. Few patients had a transition goal in their treatment plan, even when required by the payor. By assessing transition readiness, clinicians were able to identify deficits in need of remediation in 95 % of patients. Transition readiness was highest in the following domains of the TR_XANSITION Index: Ongoing support (85.15 %), Adherence (78.38 %), and Trade/School (71.29 %). Transition readiness was lowest in New Providers (30.94 %), Rx/Medications (37.99 %), and Insurance (42.57 %). Few knew when their current health insurance coverage would end (10.89 %) or how to get health insurance coverage when they became an adult (11.88 %). Mental health transition readiness and medical condition transition readiness did not differ in a sub-sample of youth with available data, t(14) = −1.33, p =.20.</div></div><div><h3>Conclusion</h3><div>Mental health transition readiness is suboptimal in youth with co-occurring mental health and medical conditions. Findings point to specific targets for future intervention to improve patient mental health transition readiness and patient/family awareness of transition practices.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100077"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142586618","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":"Transition experiences for individuals who are culturally Deaf, deaf, or hard of hearing in the United States and Canada: A scoping review","authors":"Anna Kell ,&nbsp;Cindy Corbett ,&nbsp;Donna M. Kazemi ,&nbsp;Stephen Fitzmaurice ,&nbsp;Robin M. Dawson","doi":"10.1016/j.hctj.2024.100059","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100059","url":null,"abstract":"<div><h3>Introduction</h3><p>Adolescence is a crucial time of transition in all aspects of life. Transition experiences for culturally Deaf individuals and individuals who are deaf or hard of hearing often differ from the mainstream population. The purpose of this scoping review was to examine and synthesize the existing literature surrounding transition experiences for culturally Deaf and deaf and hard of hearing populations through the lens of Meleis’ Transitions Theory.</p></div><div><h3>Method</h3><p>Using PRISMA-ScR guidelines, a scoping review of literature related to transition experiences for culturally Deaf individuals and individuals who are deaf or hard of hearing was conducted. The scope of the review was limited to articles focused on the United States and Canada published in the past ten years.</p></div><div><h3>Results</h3><p>After the screening process, 46 sources related to transition experiences remained. The following transition periods were identified: postsecondary education transitions, early childhood transitions, other education transitions, vocational transitions, social transitions, independent living transitions, and health-related transitions. Additional concepts from Meleis’ Transitions Theory, such as transition types and transition conditions, were identified and included in the thematic analysis.</p></div><div><h3>Discussion</h3><p>Existing literature primarily focused on educational and vocational transitions during adolescence and young adulthood. However, most quantitative studies were secondary analyses of the National Longitudinal Transition Study (NLTS2). Future research should focus on intervention work and other relevant transitions, such as health care transitions.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100059"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000199/pdfft?md5=462f6aefd2d38006242d66abc5bdb133&pid=1-s2.0-S2949923224000199-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141242695","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":"Development of a multi-level/multi-modal intervention for health care transition preparation","authors":"Beth H. Garland ,&nbsp;Mary Majumder ,&nbsp;Constance M. Wiemann ,&nbsp;Blanca Sanchez-Fournier ,&nbsp;Jordyn Babla ,&nbsp;Albert C. Hergenroeder","doi":"10.1016/j.hctj.2024.100063","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100063","url":null,"abstract":"<div><h3>Aims</h3><p>Health care transition (HCT) to adult care and young adult disease self-management is a multi-step process involving three major stakeholders – the adolescent, the caregiver, and the provider. Preparation gaps exist within each of these stakeholder groups. This paper presents the development of the Intervention to Promote Autonomy and Competence in Transition-aged Youth (IPACT), a multi-level (adolescent, caregiver, provider), multi-modal (interactive skill building sessions, educational materials, videos) intervention to address gaps in all three stakeholder groups simultaneously and help support achieving the three core elements of HCT planning.</p></div><div><h3>Methods</h3><p>Eight processes were utilized to develop the IPACT intervention, including reliance on existing literature and materials, stakeholder feedback at multiple points during development, and regular support and guidance from service liaisons within each of four tertiary-care clinics targeted for this intervention within a large, urban children’s hospital.</p></div><div><h3>Conclusions</h3><p>IPACT includes the conceptual schema, logic model, intervention curriculum components, and implementation timeline. IPACT could be used by programs to simultaneously address gaps in stakeholder HCT planning knowledge and skills.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100063"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000230/pdfft?md5=b7dadd606ce76ac07a9b247fd3d7cfa1&pid=1-s2.0-S2949923224000230-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141540299","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":"Transition to adult healthcare for immigrant youth: Practice recommendations","authors":"Andrew S. Mackie ,&nbsp;Mia Tulli-Shah ,&nbsp;Alyssa Chappell ,&nbsp;Michael Kariwo ,&nbsp;Siciida Ibrahim ,&nbsp;Bukola Salami","doi":"10.1016/j.hctj.2024.100079","DOIUrl":"10.1016/j.hctj.2024.100079","url":null,"abstract":"<div><h3>Introduction</h3><div>The transition from pediatric to adult healthcare is challenging for adolescents and young adults (AYA) with pediatric-onset chronic health conditions. Although barriers faced by AYA during transition are well-documented, previous studies have not considered how migration and settlement impact patient and family experiences.</div></div><div><h3>Objectives</h3><div>To fill this gap, we conducted a qualitative descriptive study to explore the recommendations for policy and practice from the perspectives of immigrant and refugee AYA living with chronic health conditions in Canada as they transition from pediatric to adult healthcare. We also sought the perspectives of their parents/caregivers and service providers.</div></div><div><h3>Methods</h3><div>Semi-structured individual interviews and focus groups were conducted with 20 AYA, 14 caregivers, and 5 service providers. AYA were 1st or 2nd generation immigrants to Canada, aged 16–25, with childhood-onset chronic health conditions. Parents or caregivers were 1st generation immigrants, having children with chronic health conditions. Service providers delivered healthcare or other services to immigrant populations.</div></div><div><h3>Results</h3><div>Recommendations to improve the transition process and mitigate barriers to care included providing more accessible information about patients’ health conditions prior to transition, moving the age of transfer beyond age 18, establishing a centralized online health portal for patients who are transitioning to the adult system, providing family case workers, increasing language support, and increasing cross-sector support.</div></div><div><h3>Conclusion</h3><div>A broad range of recommendations aimed at improving the transition process were provided. Future interventions to support transition from pediatric to adult care for immigrants and refugees should incorporate these recommendations.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100079"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142586617","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":"Health care transition quadruple aim outcomes for IDD: Scoping review","authors":"Ellen Fremion ,&nbsp;Kathleen Irby ,&nbsp;Sophia Jan ,&nbsp;Carlie Stein Somerville ,&nbsp;Susan Shanske ,&nbsp;Dava Szalda ,&nbsp;Ahmet Uluer ,&nbsp;Parag Shah","doi":"10.1016/j.hctj.2024.100067","DOIUrl":"10.1016/j.hctj.2024.100067","url":null,"abstract":"<div><h3>Purpose</h3><p>Structured HCT models addressing planning, transfer, and integration into adult care for adolescents and young adults with childhood-acquired chronic conditions are becoming more prevalent. However, consensus on outcome measures to assess health care transition (HCT) interventions particularly for intellectual and developmental disabilities (IDD) population is lacking. This scoping review identified potential HCT outcome measures for young adults (aged 18–26) with IDD using the Quadruple Aim Framework.</p></div><div><h3>Methods</h3><p>On August 6, 2021 and April 27, 2023, Medline Ovid, Embase, Web of Science, PsycINFO, and Cochrane databases were searched using the terms “young adult,” “intellectual disability,” “developmental disability, “cognitive dysfunction,” “autism,” “cerebral palsy,” “spina bifida,” and “transition to adult care.” Searches were limited to publications in English and published from 2000 to present. Observational and experimental (qualitative or quantitative) studies were included if participants were young adults (median/mean ages 18–26) with IDD (Autism, cerebral palsy, Down syndrome, spina bifida, or other IDD-related conditions) and study outcomes addressed one of the Quadruple Aim domains (population health, patient/family experience, cost/utilization, and healthcare provider/caregiver experience). Studies were excluded if participants had attention deficit/hyperactivity disorder or learning disability only, if outcomes were primarily educational or vocational, or if publications were reviews, abstracts, or not in English.</p></div><div><h3>Results</h3><p>One hundred and three articles were included data extraction. Articles were categorized under the Quadruple Aim domains: Population Health (43), Patient/Caregiver Healthcare Experience included (23), Cost/Utilization (24), and Healthcare Provider/Caregiver Experience (15). Most articles were observational and utilized a variety of assessments or internally developed questions as measures.</p></div><div><h3>Conclusions</h3><p>While studies describing HCT outcomes for the IDD population are limited and measures are inconsistent, studies pertaining to Quadruple Aim outcomes identified in this review can further direct efforts towards consensus and standardization of HCT outcome measures to address the needs of individuals with IDD, their families, and caregivers/providers.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100067"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000278/pdfft?md5=feefe23b8ae07e4785a28894e941606c&pid=1-s2.0-S2949923224000278-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142048526","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}