Health Care Transitions最新文献

{"title":"Initial outcomes in a sickle cell disease transition clinic","authors":"Katheryne Madrazo-Aguirre ,&nbsp;Jean-Antoine Ribeil ,&nbsp;Amy E. Sobota","doi":"10.1016/j.hctj.2024.100056","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100056","url":null,"abstract":"<div><h3>Background</h3><p>Transition in sickle cell disease (SCD) is associated with an alarming increase in acute care utilization, cost, and risk of early mortality. Effective transition preparation is crucial to address these issues. We established a multidisciplinary transition clinic at our urban SCD center in the fall of 2021. At each visit patients were introduced to the transition process and met with a pediatric and adult SCD provider.</p></div><div><h3>Methods</h3><p>We reviewed charts of patients attending the clinic from September 2021 to May 2023. Data were collected on the number of visits in the transition and adult SCD clinics. Clinic notes were reviewed, identifying the main topics of discussion, and examining patient attitudes and feelings towards transition.</p></div><div><h3>Results</h3><p>Twenty-two patients aged 20–27 years with 35 total visits were included in the analysis. Eighteen (82%) patients had at least 1 visit to transition clinic. Out of 10 scheduled patients, 8 attended their first adult care visit within 2.4 months of their last transition visit. Medical topics brought up by patients included difficulty remembering to take hydroxyurea, questions about reproductive and menstrual health, and support pursing higher education with a chronic disease. Patients expressed a variety of feelings about transition from “no concerns” to “nervousness” and questioning “what to expect”. Concerns were alleviated by learning about the process. One patient reported feeling “much better\" after being introduced to the adult provider.</p></div><div><h3>Conclusion</h3><p>We demonstrated that a collaborative transition clinic prepares young adults with SCD for transition to adult care. Meeting with their adult SCD provider prior to transfer helped alleviate patients’ concerns. Future work will involve tracking patients as they integrate into adult clinic.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100056"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000163/pdfft?md5=65e780273027c9fb7cf3313536187098&pid=1-s2.0-S2949923224000163-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140138669","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":"Framework for developing self-actualization skills in young adults with autism","authors":"Megumi J. Okumura ,&nbsp;Sarah Kate Selling ,&nbsp;Allison Uba ,&nbsp;Susanne P. Martin-Herz ,&nbsp;Heidi H. Seretan ,&nbsp;Lisa Rosene ,&nbsp;Jacy Cohen ,&nbsp;Kathleen P. Tebb ,&nbsp;Roberta S. Rehm","doi":"10.1016/j.hctj.2023.100038","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100038","url":null,"abstract":"<div><h3>Purpose</h3><p>Young adults with autism spectrum disorder (YAASD) often lack the skills needed for successful adult living and subsequently develop lower quality of life and health in adulthood. Therefore, we developed a framework to support resilience and improve quality of life in YAASD, which will be used to develop a life-skills curriculum for YAASD.</p></div><div><h3>Methods</h3><p>We conducted a qualitative study of YAASD, parents of YAASD and service providers recruited from agencies that serve YAASD using Grounded Theory. We focused our interviews on supports and skills needed to enhance quality of life in adulthood.</p></div><div><h3>Results</h3><p>A total of 23 individuals were interviewed. We developed the major theoretical code; “Self-actualization skills in young adults with autism to improve quality of life”. This code recognized the neurodiversity of YAASD as well as comorbid intellectual disability and mental health needs, which often were additional barriers to achieving life goals. We identified the need for developing skills to facilitate both independence and greater insight, including self-care, self-advocacy, and social integration. YAASD struggled in developing skills to adapt to the constantly changing environment that neurotypical adults deal with daily. Factors that would facilitate development of self-actualizing skills include resources that promote creating structure in an adult world that can appear unstructured to YAASD.</p></div><div><h3>Conclusions</h3><p>Self-actualization for adults requires skills for self-care, decision making, and effective communication. Unfortunately, most programs for YAASD emphasize vocational and simple task performance. Our framework facilitates self-actualization skills to enhance health and wellness, potentially reducing barriers to living meaningfully within the community.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100038"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000387/pdfft?md5=c5be1ad0bdaf75879a9e98f3d43f9cd5&pid=1-s2.0-S2949923223000387-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139434543","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":"Perceived barriers transitioning to adult healthcare among adults with spina bifida","authors":"Tessa K. Kritikos ,&nbsp;Colleen Stiles-Shields ,&nbsp;Raynie S. Leard ,&nbsp;Grayson N. Holmbeck","doi":"10.1016/j.hctj.2024.100054","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100054","url":null,"abstract":"<div><h3>Background</h3><p>This study examined perceived barriers to transitioning to adult healthcare among a sample of young adults with spina bifida (SB) and the degree to which these perceived barriers have impeded the transition process, and assessed relationships between these self-reported barriers and demographic and medical variables.</p></div><div><h3>Methods</h3><p>In a large national survey conducted in 2019, young adults with SB between the ages of 18 and 30 years old (<em>N</em> = 326) completed a questionnaire on perceived barriers to transition, which yielded scores representing the proportion of barriers experienced and the degree of interference of these barriers. Participants included both individuals who reported that they already transitioned to adult healthcare and those who did not.</p></div><div><h3>Results</h3><p>Participants endorsed a high number of barriers, with an average of 13 (<em>SD</em> = 7.39) of the 21 assessed barriers occurring for participants. Barriers were reported to be significantly interfering (<em>M</em> = 2.38, <em>SD</em> = 0.54, range: 1- 4). Higher proportions of barriers were experienced by individuals who returned to a pediatric provider after transitioning, males, employed or students, and with sacral lesion levels. Higher interference scores were reported by individuals who returned to a pediatric provider after transitioning, as well as by individuals who identified as White, and who had a shunt.</p></div><div><h3>Conclusion</h3><p>Implications for transition programs and support are discussed.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100054"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S294992322400014X/pdfft?md5=3f017c9b103045940c58ce93981b9d57&pid=1-s2.0-S294992322400014X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140309212","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 planning and outcomes: What’s next?","authors":"Cecily L. Betz PhD, RN, FAAN (Editor-in-Chief) ,&nbsp;Maria E. Díaz-González de Ferris MD, MPH, PhD (Associate Editor)","doi":"10.1016/j.hctj.2024.100045","DOIUrl":"10.1016/j.hctj.2024.100045","url":null,"abstract":"","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100045"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000059/pdfft?md5=dc0baef14bdd133066590150e7dcddc6&pid=1-s2.0-S2949923224000059-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139827877","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":"Caring for young adult men with inflammatory bowel disease: Clinician and patient perspectives","authors":"Amy K. Bugwadia ,&nbsp;Sydney Reed ,&nbsp;Adam Finkelstein ,&nbsp;Peter Park ,&nbsp;Colin Quinn ,&nbsp;Sneha Dave ,&nbsp;Nikhil Jayswal ,&nbsp;Grady Stewart ,&nbsp;David Kohler ,&nbsp;Noel Jacobs ,&nbsp;Grant E. Barber","doi":"10.1016/j.hctj.2024.100043","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100043","url":null,"abstract":"<div><p>Inflammatory bowel disease (IBD) presents unique challenges for young adult men that extend beyond physical symptoms, encompassing psychosocial dimensions affecting all aspects of life. This article draws insights from a roundtable discussion facilitated by the Crohn's and Colitis Young Adults Network (CCYAN), focusing on the experiences of young men living with IBD. It sheds light on the intersections of IBD and men's sexual and reproductive health, fertility, and mental well-being while identifying gaps in care. The article offers recommendations for clinicians and emphasizes the role of care partners and social support, underlining the need for dedicated support structures to improve the lives of men living with IBD.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100043"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000035/pdfft?md5=7ff1cde48808ae2cd0ef070d59225505&pid=1-s2.0-S2949923224000035-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139653286","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 recommendations for young people with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholder survey findings","authors":"Christine B. Mirzaian ,&nbsp;Alexis Deavenport-Saman ,&nbsp;Sharon Hudson ,&nbsp;Cecily L. Betz","doi":"10.1016/j.hctj.2024.100075","DOIUrl":"10.1016/j.hctj.2024.100075","url":null,"abstract":"<div><h3>Background</h3><div>Limited knowledge exists as to the supports and services young people with IDD and co-occurring mental health conditions need to transition to adult-focused health care and adulthood.</div></div><div><h3>Methods</h3><div>The survey findings presented were part of a larger investigation that explored these service and supports needs obtained from 144 respondents. Data reported for this investigation were obtained from 144 respondents who answered the question, “What do you think would be most helpful to assist young people with IDD and mental health conditions with the transition from child to adult health care (not including mental health care)?\"</div><div>Qualitative analysis based upon the social-ecological model was undertaken.</div></div><div><h3>Findings</h3><div>Based on the social-ecological model (SEM), health care transition needs were reported in four of the five SEM domains-Individual, Family, Provider, and Systems Level. The responses were most frequently categorized in the SEM domains in following descending order: Individual, Provider, System and Family.</div></div><div><h3>Conclusion</h3><div>Implications for research and practice suggest that multi-level approach is needed to address the range of service needs for young adults with IDD and co-occurring mental health conditions.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100075"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142586619","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":"Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023","authors":"Jennifer Emilie Mannino ,&nbsp;Heather Reens ,&nbsp;Kathryn Smith ,&nbsp;Lynn Kysh ,&nbsp;Serge' R. Nelson ,&nbsp;Yuding Wang ,&nbsp;Manu Raam ,&nbsp;Michele Roland ,&nbsp;Alexander Van Speybroeck ,&nbsp;Cecily L. Betz","doi":"10.1016/j.hctj.2024.100041","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100041","url":null,"abstract":"<div><p>Limited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for individuals with spina bifida and their families and the health care professionals who provide services to this population. Given the paucity of knowledge of the lived experience as it pertains to adulthood, this scoping review was undertaken. More than 10,000 records from 1974 through 2023 were screened based upon the search criteria whose purpose was to examine the research conducted the psychosocial outcomes and needs of adults with spina bifida. A total of 81 articles were included in this review. The findings of this review revealed significant gaps were apparent. There was limited data on adulthood benchmarks of employment, education, community living and social relationships. Limitations associated with the investigations of this review included underpowered samples, lack of longitudinal designs, use of instruments with insufficient psychometrics, and the use of clinical and administrative data sets not designed for research purposes. As the survival rates of individuals with spina bifida continue to improve with medical advances more robust psychosocial research pertaining to this population is needed.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100041"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000011/pdfft?md5=eb193647d0a64603e684b603f41f9d9b&pid=1-s2.0-S2949923224000011-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139732573","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":"Project ECHO tele-mentoring primary care for individuals with IDD","authors":"K.Jordan Kemere ,&nbsp;Nital Appelbaum ,&nbsp;Ellen Fremion","doi":"10.1016/j.hctj.2024.100084","DOIUrl":"10.1016/j.hctj.2024.100084","url":null,"abstract":"<div><h3>Background</h3><div>As the prevalence of intellectual and developmental disabilities (IDD) has increased over time, more youth with IDD will be transitioning into adult care. Individuals with IDD have a spectrum of behavioral, medical, adaptive, and home/community support needs depending on their cognitive ability, behavior concerns, mobility impairment, and/or medical complexity. Unfortunately, data suggests that adult primary care providers often lack knowledge about the condition-specific medical and adaptive needs of the IDD population leading to decreased access to adequate primary care.</div></div><div><h3>Methods</h3><div>To ultimately improve access to high quality healthcare for individuals with IDD, we created a 6-session virtual Project ECHO(R) (Extension for Community Healthcare Outcomes) telementoring course offered to an interprofessional audience.</div></div><div><h3>Results</h3><div>We successfully launched this course, demonstrated statistically significant increased knowledge and confidence among attendees regarding six topics pertinent to this population, and had high levels of satisfaction from a diverse group of attendees.</div></div><div><h3>Conclusion</h3><div>Including nurses, social workers, advanced practice providers, physicians, and case managers in this course made for robust discussion in the delivery of high-quality care for this population. This model is a viable option to increase knowledge and confidence surrounding primary care for youth and adults with IDD.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100084"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142699777","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 state of employment in the United States among young adults with cerebral palsy","authors":"Eduardo del Rosario ,&nbsp;Jennifer Emilie Mannino ,&nbsp;Patricia A. Eckardt ,&nbsp;Dawn DiStefano","doi":"10.1016/j.hctj.2024.100083","DOIUrl":"10.1016/j.hctj.2024.100083","url":null,"abstract":"<div><div>Young adults with Cerebral Palsy (CP) have lower employment rates compared to young adults in general, as they may be confronted with physical, sensory, and cognitive impairments, coupled with personal and societal barriers as they mature. These challenges are clear, but the solutions are less so. Understanding the factors that impact employment is vital. This study aimed to identify and examine variables related to employment for this population through the lens of the International Classification of Functioning, Disability, and Health (ICF) model. The Rehabilitation Services Administration (RSA-911) federal dataset was used to examine the relationship between functioning and disability within the context of personal and environmental factors as predictors of employment among young adults with CP. Following a descriptive cross-sectional design using a secondary analysis of this national dataset, binomial logistic regression was used to predict employment outcomes. Data representing those with CP who participated in vocational rehabilitation (VR) services and were between 18 and 30 years of age at the time of exit were extracted from the 2019 RSA-911 dataset (n = 2465). Just under one-third (30.4 %, n = 750) emerged as employed, while 69.6 % (n = 1715) were unemployed at exit from their VR programs in 2019. Significant predictors for employment were participation in career and other support services, having basic skills and literacy, and being of non-Hispanic/Latino ethnicity. These findings concur with the persistent low employment rates for adults with CP and reinforce the need to understand the factors that increase employability. Healthcare professionals are urged to incorporate participation in self-management activities for all transition-aged youth that will not only improve health outcomes but promote future independence and increase awareness of vocational services for this population.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100083"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142699779","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 six successful nurse-led transition clinics: Experiences and outcomes","authors":"Jobert Sturm ,&nbsp;AnneLoes van Staa ,&nbsp;Johanna C. Escher ,&nbsp;Jane Sattoe","doi":"10.1016/j.hctj.2024.100071","DOIUrl":"10.1016/j.hctj.2024.100071","url":null,"abstract":"<div><h3>Background and purpose</h3><p>In the Netherlands, the 2022 Quality Standard 'Youth in transition from paediatric to adult care' underscores the importance of structured transitional care for young adults with chronic health conditions. Despite this emphasis, detailed knowledge about transition programs and their successful elements remains sparse. This study aims to bridge this gap by exploring nurse-led transition clinics that had successfully implemented core interventions such as a transition coordinator, warm handover, and individual transition plans.</p></div><div><h3>Methods</h3><p>Employing a mixed-methods approach, this study integrated semi-structured interviews with 15 healthcare professionals from both paediatric and adult care across six transition clinics, and surveys from 54 young adults who had transitioned within the last three years. The ‘On Your Own Feet Framework’ guided the evaluation of transitional care practices. Thematic analysis was applied to qualitative data, while descriptive and inferential statistics were used to analyse quantitative data.</p></div><div><h3>Results</h3><p>The study revealed a strong dedication among healthcare professionals to ensuring smooth transitions and effective collaboration between paediatric and adult care. The young adults reported high satisfaction with their transitions, particularly appreciating the continuity of care and the pivotal role of nurses and nurse practitioners as transition coordinators. However, challenges such as engaging young adults, resource allocation, and financial complexities were noted, alongside areas for improvement including shared decision-making and managing parental involvement. Motivation and collaboration among staff were identified as facilitating factors.</p></div><div><h3>Discussion and conclusion</h3><p>Our findings emphasize the vital role of nurse-led transition clinics in enhancing healthcare transitions for young adults in the Netherlands, aligning with the principles outlined in the Quality Standard and the On Your Own Feet Framework. While high satisfaction levels with current practices suggest a positive impact, they also highlight that ongoing improvement and adaptation are needed to overcome identified challenges. Successful healthcare transition requires a comprehensive, collaborative approach involving patients, families, and healthcare professionals, supported by organizational and systemic frameworks. This study contributes to a nuanced understanding of transitional care, suggesting a path forward for integrating these practices into standard care models.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100071"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S294992322400031X/pdfft?md5=a7cb05ddef4252e77dd2c99502e8d230&pid=1-s2.0-S294992322400031X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142099311","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}