Health Care Transitions最新文献

{"title":"Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents","authors":"Benedicta C. Anikputa,&nbsp;Sharon D. Horner","doi":"10.1016/j.hctj.2023.100007","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100007","url":null,"abstract":"<div><h3>Background</h3><p>As children with special healthcare needs (SHCN) mature, they will transition from pediatric to adult healthcare providers. Close to 80% of adolescents with SHCN reported not receiving services necessary for transition to adult health care. The purpose of this study was to examine the perceptions of the transition experience of Adolescents and Young Adults (AYA) and their parents. Participants were diagnosed with either inflammatory bowel disease or a congenital heart condition.</p></div><div><h3>Methods</h3><p>A qualitative descriptive study was conducted with participants recruited from specialty pediatric care clinics that served patients with inflammatory bowel disease and congenital heart conditions. Study procedures (recruitment, consent, interview guide) were approved by the clinic staff, the hospital steering committee, and the University IRB. Interviews with AYA and with parents were conducted separately, transcribed, and then coded to identify themes.</p></div><div><h3>Results</h3><p>Interviews were completed with 8 AYA and 8 parent dyads. The identified themes were Transfer of Care, Mastery, and Support. The Transfer of Care theme reflected participants’ worries about moving from their pediatric provider to the new adult provider. The Mastery theme revealed participants lacked confidence in their self-management skills. In the Support theme, participants wanted to be prepared and familiar with the transition process and to become comfortable in the new adult world.</p></div><div><h3>Conclusions</h3><p>Recommendations shared with clinic providers were to start conversations that directly addressed the transition process early, to provide information and to encourage the AYA to ask questions. In addition, the clinics could encourage AYA to start being responsible for the routine clinic visit paperwork with guidance from the parent.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100007"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49757663","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Riding the wave: A grounded theory of transplant transition in adolescents and youth adults","authors":"Angie Lim,&nbsp;Lenora Marcellus","doi":"10.1016/j.hctj.2023.100019","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100019","url":null,"abstract":"<div><h3>Objectives</h3><p>The health care transition from pediatric to adult-focused health care for adolescent and young adult (AYA) organ transplant recipients is a critical yet understudied period. Unique challenges include supporting adherence to immunosuppressive regimens and addressing psychosocial factors that impact long-term graft survival and recipient well-being. The objective of this study was to understand how AYAs prepared for and engaged in the transition process.</p></div><div><h3>Methods</h3><p>Constructivist grounded theory, underpinned by symbolic interactionism, was employed to systematically gather, synthesize, analyze, and conceptualize qualitative data from in-depth interviews with 14 transplant recipients, their families, and pediatric nurses, and related online social media stories.</p></div><div><h3>Results</h3><p>The overall process participants experienced was that of <em>riding the wave of change: transforming through transition,</em> which they did through navigating four phases: (1) anticipating the impending transition, (2) losing security when transitioning to uncertainty, (3) seeking supportive anchors in the swell of transition, and (4) gaining a new sense of self.</p></div><div><h3>Conclusions</h3><p>AYA transplant recipients undergo numerous changes as they enter adulthood and adult-focused health care. There are many opportunities for pediatric and adult health care providers to collaborate to strengthen support for AYA recipients and their families during this critical period. Developmental and trauma-informed approaches are recommended to support successful transition.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100019"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pediatric to adult primary care transition for medically complex youth: A tale of learning from challenges experienced implementing a pilot project during COVID-19","authors":"Reem Hasan ,&nbsp;Reyna Lindert ,&nbsp;Danielle Sullivan ,&nbsp;Shreya Roy ,&nbsp;Alison J. Martin","doi":"10.1016/j.hctj.2023.100027","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100027","url":null,"abstract":"<div><h3>Purpose</h3><p>The aim of our article is to describe our learning based on challenges encountered implementing two related pediatric to adult primary care transition pilots for medically complex adolescents and young adults as part of the Children with Medical Complexity Collaborative for Improvement and Innovation Network.</p></div><div><h3>Design</h3><p>We undertook two sequential pilot projects. The first focused on supporting the transfer stage for an older group of medically complex young adults to facilitate their establishment with an adult primary care provider. Based on our learning from barriers encountered, and setting constraints due to COVID-19, we developed and implemented a second project to engage pediatric primary care providers in initiating and documenting transition preparation discussions for a younger group of medically complex youth. A multi-disciplinary Implementation Team guided each phase’s implementation.</p></div><div><h3>Results</h3><p>We did not achieve our objective in the first pilot, partly due to provider reluctance. Providers perceived the patient was not ready, reported that the patient was experiencing active health problems, or wanted to keep the patient on their panel. We partially achieved the second pilot’s objective; three-quarters of identified patients completed their appointments, and electronic health record documentation suggests that providers initiated transition discussions with more than half of those patients.</p></div><div><h3>Conclusions</h3><p>Pediatric primary care has an important role in supporting health care transition for medically complex youth. Our findings suggest that pediatric primary care providers require time, connection to adult PCPs, and educational support to realize this role.</p></div><div><h3>Practice implications</h3><p>To provide comprehensive transition services for medically complex patients, pediatric primary care will need to develop relationships with adult primary care providers, make available training about transition preparation for its providers, and support patients and families in locating adult primary care providers who are accepting new patients.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100027"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000272/pdfft?md5=94683916870aadec07c71071884226c6&pid=1-s2.0-S2949923223000272-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92025769","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":"Initial observations of medically complex young adults transitioning to adult care: Revealing data regarding mental health, nutrition, and transition preparedness","authors":"Emily Hooker ,&nbsp;Madeline Eckenrode ,&nbsp;Betsy Hopson ,&nbsp;Carlie Stein Somerville","doi":"10.1016/j.hctj.2023.100005","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100005","url":null,"abstract":"<div><h3>Background</h3><p>Approximately one million adolescents with medical complexity transition into adult healthcare each year. Pediatric and adult providers alike have identified several barriers to transition, including insufficient knowledge of community resources, a lack of reimbursement for providing transition services, and an overall shortage of medical providers. Because of these barriers, the healthcare needs and challenges of this population have been understudied. The purpose of this article is to describe findings regarding nutrition, mental health, transition readiness, and caregiver burnout in a patient population of medically complex young adults in the interdisciplinary STEP clinic in the state of Alabama. Through the establishment of streamlined transition programs such as STEP, providers can address the unique health care needs of this patient population, with particular emphasis on optimizing mental health and nutrition.</p></div><div><h3>Methods</h3><p>All patients seen at the STEP clinic from September 2020 to August 2021 (n = 169) were evaluated through pertinent validated assessments of transition readiness (TRAQ), and/or caregiver burden (ZBI), and/or mental health (PHQ9, GAD7). Additional variables collected from patient charts include age, race, diagnosis, primary insurance type, equipment dependence, and body mass index (BMI).</p></div><div><h3>Results</h3><p>The average TRAQ score of patients included in this study is 3.57 ± 1.11. A TRAQ score of below 4.0 suggests that the patient is not yet ready to transition from pediatric to adult care. The average ZBI score of caregivers is 20.97 ± 12.59, which indicates mild to moderate caregiver burden. 33% of patients were found to have moderate to severe anxiety, and 28% were found to have moderate to severe depression. Only 3.6% of patients seen at the STEP clinic have a BMI within normal limits. 113 of our patients have ongoing use of medical technology, and 49% are wheelchair users.</p></div><div><h3>Conclusions</h3><p>The need for organized transition care for medically complex young adults is apparent and growing. This patient population faces unique challenges in navigating the adult healthcare system, and patients are often unprepared for the transition. It is crucial that multidisciplinary clinics in which mental health and nutrition are addressed become accessible to all patients within this high-risk population.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100005"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743480","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Describing healthcare concerns of adolescents and adults with cerebral palsy","authors":"Christina M. Winger ,&nbsp;Caitlin Cassidy ,&nbsp;Jessica Starowicz ,&nbsp;Laura Brunton","doi":"10.1016/j.hctj.2023.100023","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100023","url":null,"abstract":"<div><h3>Aim</h3><p>To identify healthcare concerns of adolescents and adults with cerebral palsy (CP) followed in a multidisciplinary rehabilitation program and identify patient factors associated with the number of concerns raised.</p></div><div><h3>Method</h3><p>A retrospective chart review of initial consultations of 241 people with CP (53 % male) aged 14 years or older (mean 27 y 5mo, SD 13 y 2mo), over a three-year period. Descriptive statistics were used to summarize data and explore associations. Poisson’s regression was used to predict healthcare concerns from patient demographic factors.</p></div><div><h3>Results</h3><p>A total of 2237 distinct concerns were raised by the participants, with a median of 9 (range 1–34) concerns per person. Ten healthcare concern categories were reported by more than 25 % of the sample. Only age was associated with the number of healthcare concerns (<em>r</em> = 0.25, <em>p</em> &lt; 0.001). Age and GMFCS significantly predicted total number of healthcare concerns.</p></div><div><h3>Interpretation</h3><p>Adolescents and adults with CP reported a high number of healthcare concerns at the initial visit to the Transitional and Lifelong Care program and the number of concerns may increase with advancing age. The concerns identified span a variety of biopsychosocial spheres and supports the need for ongoing specialty and multidisciplinary care of this population through their adult years.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100023"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743768","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact-of-COVID-19 on mortality and implications for adolescent and young-adult healthcare","authors":"Yoshiyasu Takefuji","doi":"10.1016/j.hctj.2023.100015","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100015","url":null,"abstract":"<div><p>This paper investigates the effect of COVID-19 on mortality in the child and adolescent population of five age groups. The CDC dataset was used for calculating the number of deaths by adolescent age group from 2015 to 2020. Results showed that the older the adolescent, the stronger the effect of COVID-19 on mortality. There is no significant impact of COVID-19 on mortality of three aged groups (1–4, 5–9 and 10–14). There is a significant impact of COVID-19 on mortality of two aged groups (15–19 and 20–24). The findings indicate that effective drugs should be used for protecting them against COVID-19 and for computational ethics.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100015"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743941","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}