Health Care Transitions最新文献

{"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}

{"title":"Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative","authors":"Jocelyn Dennis ,&nbsp;Leslie Pitts ,&nbsp;Leen Matalka ,&nbsp;Lauren C. Mays","doi":"10.1016/j.hctj.2024.100057","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100057","url":null,"abstract":"<div><h3>Background and significance</h3><p>Congenital adrenal hyperplasia (CAH) is a genetic condition impairing adrenal steroid production, requiring lifelong steroid replacement, leading to decreased quality of life and a shortened lifespan. Preparing and supporting adolescents with CAH to develop health-related knowledge, skills, and decision-making during the pediatric-to-adult healthcare transition (HCT) is a priority. Many adolescents with CAH do not receive adequate HCT and do not attend follow-up care after transfer to an adult setting. The Comprehensive Adolescent Healthcare Transition (CAH-T) program was developed using CAH care guidelines and the Got Transition Six Core Elements of Healthcare Transition approach.</p></div><div><h3>Purpose</h3><p>This quality improvement (QI) initiative aimed to evaluate clinicians’ utilization and acceptance of the CAH-T program for addressing the HCT needs of adolescents with CAH in a southeastern United States pediatric endocrine clinic.</p></div><div><h3>Intervention</h3><p>Baseline demographics, the Health Care Transition Feedback Survey for Clinicians, and the Current Assessment of Healthcare Transition Activities were measured using surveys adopted from Got Transition. Clinicians were educated on the CAH-T program and patient education materials. Following implementation, clinicians documented all CAH-T program-recommended interventions provided in the clinic. Surveys were reassessed using repeated measures.</p></div><div><h3>Evaluation</h3><p>Twenty-nine clinicians participated. Eight separate patients received 53 total CAH-T program-recommended interventions during the three-month observation period. Paired assessment of the Current Assessment of Healthcare Transition Activities scores increased from 15.29 ± 8.32 to 24.00 ± 6.11 (<em>p</em> = 0.018; <em>r</em> = 0.63). The Health Care Transition Feedback Survey for Clinicians mean scores increased from 2.75 ± 0.26 to 3.30 ± 0.43 (<em>p</em> = 0.018; <em>r</em> = 0.59). These measures indicate increased utilization of HCT services and acceptance of HCT value. Clinicians suggested that time limitations, English-only transition education materials, and lack of electronic medical record integration were significant barriers to HCT support.</p></div><div><h3>Implications for practice</h3><p>A structured HCT program ensures clinicians provide adolescents with CAH support and guideline-based care. The CAH-T program offers an example of developing and implementing an HCT program for adolescents with CAH. Integration in the electronic medical record will ultimately increase program sustainability.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100057"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000175/pdfft?md5=423bba3ea86701e35ba75db8ab616da8&pid=1-s2.0-S2949923224000175-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140179827","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":"Exploring adolescent and parent perspectives on facilitating health self-management in adolescents with autism spectrum disorder","authors":"Jamie L. Rock ,&nbsp;Heather A. Becker","doi":"10.1016/j.hctj.2024.100046","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100046","url":null,"abstract":"<div><h3>Background</h3><p>As many as 95% of individuals across the lifespan with autism spectrum disorder (ASD) have at least one comorbidity. While research focused only on the health of autistic adolescents is limited, we do know that fewer than 14% of these youth receive appropriate transition services to self-manage their health. These limitations have resulted in poor outcomes and premature mortality. Little is known about how parents and their adolescent children address this health burden.</p></div><div><h3>Objective</h3><p>The objective of this study is twofold. First to compare the perceptions of adolescents with ASD and their parents regarding adolescents’ contextual and process variables (depressive symptoms, health knowledge, health communication/planning, self-efficacy, self-determination) and health self-management (HSM) behavior. The second is to examine social facilitation for HSM behaviors in adolescents with ASD and their parents.</p></div><div><h3>Methods</h3><p>In this community-based study, an online survey was used to compare the perspectives of 40 adolescents with ASD aged 12 to 22 years and their parents on the adolescents’ HSM behaviors. Contextual and process variable measures (PROMISE, Star_x, General Self-efficacy Scale, AIR Self-determination Scale, Social Facilitation Questionnaire) were completed by both adolescents (adolescent/pediatric version) and parents (parent version).</p></div><div><h3>Results</h3><p>Descriptive analysis indicated that parents were teaching self-management to adolescents for monitoring and preventing illness, including medication knowledge and how to talk to their doctor. The largest differences were found between parents’ and adolescents’ perceptions regarding teaching and learning about independent management of existing health conditions. Additionally, adolescents rated their self-efficacy (t (38) = 3.62, <em>p</em> &lt; .001) and self-determination (<em>t (</em>39) = 4.55, <em>p</em> &lt; .001) significantly higher than their parents did.</p></div><div><h3>Conclusions</h3><p>This study contributes perspectives on what parents and adolescents are doing to enhance adolescents’ health self-management. Adolescence is a developmental period of social facilitation when parents may teach their adolescent children with ASD to self-manage their health and when those adolescents may learn to do so. During this period, providers should offer adequate planning and guided training to support parents and their adolescent children with ASD to improve adolescents’ self-management behaviors and improve health outcomes for this vulnerable population.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100046"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000060/pdfft?md5=d6590b50f230c1f20ea1244bf4d1426d&pid=1-s2.0-S2949923224000060-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139675795","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":"“We do it all”: A qualitative exploration of the caregiver role for young adults with cerebral palsy","authors":"Cristina A. Sarmiento ,&nbsp;Chloe Glaros ,&nbsp;Jessica Solomon Sanders ,&nbsp;Jordan M. Wyrwa ,&nbsp;Brooke Dorsey Holliman ,&nbsp;Lisa A. Brenner","doi":"10.1016/j.hctj.2023.100039","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100039","url":null,"abstract":"<div><h3>Aim</h3><p>To describe the complex roles of and crucial support provided by caregivers to young adults with cerebral palsy (CP) during the transition to adulthood.</p></div><div><h3>Method</h3><p>This was a qualitative study. We conducted 20 semi-structured interviews (13 caregiver; 7 patient/caregiver dyad) and analyzed data using a qualitative descriptive approach informed by phenomenological principles.</p></div><div><h3>Results</h3><p>We identified four major themes related to the roles that caregivers play during the transition to adulthood for young adults with CP: 1) caregivers as care coordinators; 2) navigating logistic and insurance barriers; 3) adjusting to adulthood and planning for an uncertain future; and 4) supporting maintenance of health, function, and quality of life. Overall, caregivers shared the many different ways that they act as advocates for young adults with CP. Many participants identified the extensive amount of time, energy, and financial resources required to appropriately provide care.</p></div><div><h3>Conclusions</h3><p>The transition to adulthood for young adults with CP is a challenging, uncertain, complex process for both adults with CP and their caregivers. Throughout this transition, caregivers also prioritize the happiness and quality of life of their adult children with CP. Our findings could be used by clinicians and researchers to develop and study patient- and family-centered transition processes for individuals with CP that attend to the struggles and priorities of youth with CP and caregivers alike.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100039"},"PeriodicalIF":0.0,"publicationDate":"2023-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000399/pdfft?md5=3ef1a84870e360a55fb382b03528caa0&pid=1-s2.0-S2949923223000399-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139050406","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":"Surviving transition: A qualitative case study on how families adapt as their youth with medical complexity transitions from child to adult systems of care","authors":"Lin Li ,&nbsp;Nancy Carter ,&nbsp;Jan Willem Gorter ,&nbsp;Linda Till ,&nbsp;Marcy White ,&nbsp;Patricia H. Strachan","doi":"10.1016/j.hctj.2023.100035","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100035","url":null,"abstract":"<div><h3>Background</h3><p>A growing population of youth with medical complexity (YMC) are entering adult health care, education, and social systems in which their needs have been largely neglected. To better support YMC and their families, an understanding of how they manage the challenges of transitioning to adult services is needed. The aim of this study was to examine how families of YMC adapt to challenges and opportunities posed by the youth’s transition to adulthood and transfer to adult services.</p></div><div><h3>Methods</h3><p>In partnership with two parent co-researchers and underpinned by complex adaptive systems and the Life Course Health Development framework, a qualitative explanatory case study was conducted. Seventeen participants from 11 families of YMC (aged 16–30) living in Ontario were recruited. Data from 21 semi-structured interviews were analyzed using reflexive thematic analysis and further refined through theory-driven analysis. Supplementary documents shared by participants were analyzed using directed content analysis.</p></div><div><h3>Findings</h3><p>Three overarching themes were generated. “Imagining, pursuing, and building a good future” describes families’ priorities and visions for the youth’s life as an adult. “Perils and obstacles of an imposed transition” examines challenges that families face in their pursuit of a good future. Lastly, “surviving the transition” describes how families are forced to advocate, make sacrifices, and persist in their efforts to adapt to transition.</p></div><div><h3>Conclusions</h3><p>Pediatric providers should offer anticipatory guidance, partner with families in advocacy, and provide psychological support during transition. Education for adult and primary care providers should focus on developing professional competencies in the safe care of YMC, building capacity through clinical exposure, and creating culturally safe environments. Most importantly, YMC and their families need a model of care that can provide integrated, holistic, multidisciplinary care management across the lifespan.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100035"},"PeriodicalIF":0.0,"publicationDate":"2023-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000351/pdfft?md5=2fd294809e8250806b8bfa81d3649d32&pid=1-s2.0-S2949923223000351-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139033827","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":"Collecting resilience points for a smooth transition to adult healthcare services: Co-creating a playful resource for Spina Bifida","authors":"Sharon Levy ,&nbsp;Stephanie (Charlie) Farley ,&nbsp;Iona Campbell","doi":"10.1016/j.hctj.2023.100036","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100036","url":null,"abstract":"<div><h3>Background</h3><p>The transition of young people with a disability or a chronic health condition, from paediatric to adult-focused health and social care services, in Scotland, is known to be difficult. There is a significant body of evidence to suggest that a transition should start early, be holistic and inclusive, as well as structured to build essential capabilities and promote resilience. The nurse-led project, reported here, created a playful mechanism for meaningful interaction between young people, families and healthcare professionals.</p></div><div><h3>Methodology</h3><p>Using participatory design as a framework to support development of a collaborative boardgame, guided ways to develop a ‘sense of coherence’. The ecological framing of resilience shaped the way captured lived experience, of adults with spina bifida who transitioned to adult care, was used to support developments. Experiential learning guided the co-creation of a playful resource on a journey through transition that could be used by families as well as healthcare students and professionals. We also explored ways to enhance a ‘Sense of Coherence’ and build resilience through serious game design.</p></div><div><h3>Results</h3><p>In this nurse-led project we jointly crafted and tested a transition game that is easily accessible, inclusive and sufficiently adaptable to fit different settings, communities and cultures. The open licence enables others to freely use and adapt this game so it could be further used, tested and validated.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100036"},"PeriodicalIF":0.0,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000363/pdfft?md5=e8ef0a4291427401eb9822c04940fd63&pid=1-s2.0-S2949923223000363-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138582017","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":"An institution-wide mixed methods assessment of healthcare transition","authors":"Anisha Maheshwari ,&nbsp;Anna Maria Coronata ,&nbsp;Laura Kirkpatrick ,&nbsp;Ahmed Abdul-Al ,&nbsp;Andrew McCormick ,&nbsp;Loreta Matheo ,&nbsp;Traci M. Kazmerski","doi":"10.1016/j.hctj.2023.100034","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100034","url":null,"abstract":"<div><h3>Background</h3><p>Healthcare transition (HCT) is the process of moving a patient from pediatric, parent-supervised care to an independent, adult-centered model. This study assesses current HCT activities and explores the educational and system-based needs for effective HCT processes in a single institution.</p></div><div><h3>Methods</h3><p>We interviewed division/care program leaders at one academic tertiary-care children’s hospital regarding HCT practices. We evaluated these groups using an interview guide and rubric scoring from the “GotTransition Current Assessment of HCT Activities” (scoring range from 8 [low HCT] to 32 [high HCT]). We audio-recorded and transcribed interviews. We calculated each group’s score on the rubric. Two coders qualitatively analyzed interview transcripts using a thematic analysis approach with deductive and inductive strategies.</p></div><div><h3>Results</h3><p>We interviewed 28 participants, each representing one division/care program. The institutional mean on the HCT assessment was 15.5 ± 4.5 (median 17.5, range 8–28). Key interview themes included: 1) Significant heterogeneity in the HCT process exists within most divisions/care programs; 2) While some groups have their own HCT practices, there is no coordinated institutional HCT approach.; 3) Participants find HCT difficult if they perceive the lack of an equivalent adult specialist for a patient’s specific medical condition; 4) There is a lack of coordinated handoffs from pediatric to adult providers. 5) Participants desire ancillary staff to support HCT.</p></div><div><h3>Conclusion</h3><p>Despite known benefits of a structured approach, most leaders report heterogeneity in current HCT practices and a lack of institutional resources and adult provider partners to support optimal HCT. We present a reproducible methodology to evaluate HCT within a single institution, as well as baseline assessment data that may inform interventions.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100034"},"PeriodicalIF":0.0,"publicationDate":"2023-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S294992322300034X/pdfft?md5=bb4a3f1761628f1edbcda4ecf7d59f10&pid=1-s2.0-S294992322300034X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138581990","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":"Sexual and reproductive health considerations in the care of young adults with inflammatory bowel disease: A multidisciplinary conversation","authors":"Sydney Reed ,&nbsp;Amy K. Bugwadia ,&nbsp;Sneha Dave ,&nbsp;Hannah E. Wilson ,&nbsp;Prathikka Ramesh ,&nbsp;Hilary K. Michel","doi":"10.1016/j.hctj.2023.100033","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100033","url":null,"abstract":"<div><p>The effects of inflammatory bowel disease (IBD) and the medications used to treat it on sexual and reproductive health can be significant, impacting the quality of life of patients across gender identities. This article presents insights from a roundtable discussion facilitated by the Crohn's and Colitis Young Adults Network (CCYAN) between young adult patients with IBD and medical professionals, including physicians, nurses, psychologists, and trainees/medical students. It underscores the distinction between sexual and reproductive health, emphasizing the need to address both aspects comprehensively. The discussion identified key themes, including sexual dysfunction and well-being in IBD patients; discussing sexual health with young adult IBD patients; current research in reproductive health: gaps and opportunities; discussing reproductive health with young adult IBD patients; and providing resources and comprehensive multidisciplinary care.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100033"},"PeriodicalIF":0.0,"publicationDate":"2023-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000338/pdfft?md5=63f8e0be19a9ac873ac55049967971c6&pid=1-s2.0-S2949923223000338-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138557309","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 assistance for recommended treatment (SMART) IBD app randomized control trial in adolescents with IBD: Design and methodology","authors":"Caroline M. Roberts ,&nbsp;Jill M. Plevinsky ,&nbsp;Kaitlyn L. Gamwell ,&nbsp;Amy E. Noser ,&nbsp;Lee A. Denson ,&nbsp;Kevin A. Hommel","doi":"10.1016/j.hctj.2023.100031","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100031","url":null,"abstract":"<div><h3>Aims</h3><p>Adherence to medical regimens, including medications and appointments, is a significant concern for adolescent populations that warrants behavioral interventions. Negative health behaviors during adolescence can persist into adulthood and lead to long-term negative health outcomes. Due to the limited availability and resources for behavioral self-management intervention, many youth do not receive evidence-based behavioral care and continue to struggle with managing their illness. Therefore, there is a need for easily accessible mHealth interventions targeting self-management in order to reduce health care barriers and provide more timely and effective behavioral care particularly during this developmental stage.</p></div><div><h3>Methods</h3><p>We provide a description of the design and methodology of the Self-Management Assistance for Recommended Treatment (SMART) IBD App randomized controlled pilot trial in pediatric inflammatory bowel disease (IBD) that aims to test the preliminary efficacy of the SMART IBD app compared to a usual care (UC) arm. Thirty participants 13–17 years of age will be recruited and randomized in the trial. Those randomized to the intervention arm will use the app for four weeks, each with one weekly challenge that focuses on self-management. Participants in both arms will complete baseline assessments, daily diaries for four weeks, and post-treatment assessments.</p></div><div><h3>Conclusion</h3><p>We hypothesize that participants in the intervention arm will experience clinically significant improvements in their self-management compared to those in the UC arm at the post-treatment assessment. Findings from the current study could provide initial evidence to support self-management interventions in adolescents with health conditions via mobile health apps, thereby reducing health care barriers and strains on institutional and nursing resources. Mobile health apps may also be a preferred avenue to disseminate interventions to adolescents.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100031"},"PeriodicalIF":0.0,"publicationDate":"2023-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000314/pdfft?md5=de3b1a3f7b00a856c0b1d8d95e90f5d1&pid=1-s2.0-S2949923223000314-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138472056","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}