Health Care Transitions最新文献

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Developing a specialty transition clinic: Inaugural clinical and financial operations 发展专业过渡诊所:开业临床和财务运作
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100024
Wendy N. Gray , Erin Benekos , Courtney Malave , Lauren Partain , Parasto Dorriz , Michael Weiss
{"title":"Developing a specialty transition clinic: Inaugural clinical and financial operations","authors":"Wendy N. Gray ,&nbsp;Erin Benekos ,&nbsp;Courtney Malave ,&nbsp;Lauren Partain ,&nbsp;Parasto Dorriz ,&nbsp;Michael Weiss","doi":"10.1016/j.hctj.2023.100024","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100024","url":null,"abstract":"<div><h3>Purpose</h3><p>Few examples of hospital-wide transition programs have been presented in the literature and to date, we have no data on the clinical and financial operations of such services.</p></div><div><h3>Design and methods</h3><p>A transition clinic, guided by Got Transition’s Six Core Elements, was created for youth with moderate-to-high medical and psychosocial complexity (per Bob’s Levels of Social Support scale). The clinic visit and transition readiness assessment (UNC TR<sub>x</sub>ANSITION Index) were billed fee-for-service or under a bundled payment managed care model. We present data on patient characteristics, clinic operations, finances, and patient/parent satisfaction (online survey) in the clinic’s first year of operation (March 2021-February 2022).</p></div><div><h3>Results</h3><p>In Year 1, the clinic completed 115 appointments (113 unique patients). Most patients were older adolescents/young adults (M = 19.7 ± 1.8 years) and nearly half were Latinx. Patients presented with several complex medical needs including coordination of care across multiple subspecialties, high health care utilization, decision-making determinations, behavioral and mental health concerns, and resource needs. Implementation of the Six Core elements was high (range 99.1%−100%). The average billed per patient was $498 (in 2021–2022 USD). Considering paid and unpaid office visits, we collected an average of 31.6 cents on the dollar. Almost 80% of office visit claims and 21.9–33.3% of transition readiness assessments were paid by insurers. Patient/parent satisfaction was high, with over 90% of families reporting that they learned something, knew one thing they could do to improve transition readiness, and were able to get their questions asked and answered.</p></div><div><h3>Conclusions</h3><p>Transition clinics may never be fully self-sustainable given low collection rates and inability to capture extra charge codes related to chronic care management and transitional care. However, our collection rate was on-par with the collection rate for our hospital’s subspecialty clinics and we show it is possible to receive some funding from insurers.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100024"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743765","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}
引用次数: 0
Perspectives on health care transition among U.S. parents of internationally adopted children living with HIV: A qualitative study 国际收养的艾滋病毒感染儿童的美国父母医疗保健转型前景:一项定性研究
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100010
Faith Glover , Rosemary Olivero , Cynthia Fair
{"title":"Perspectives on health care transition among U.S. parents of internationally adopted children living with HIV: A qualitative study","authors":"Faith Glover ,&nbsp;Rosemary Olivero ,&nbsp;Cynthia Fair","doi":"10.1016/j.hctj.2023.100010","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100010","url":null,"abstract":"<div><h3>Objective</h3><p>To analyze perspectives on health care transitions among parents who have internationally adopted children living with HIV (IACH)The transition of youth with living with HIV from pediatric to adult care is associated with adverse health outcomes, including poor medication adherence and appointment attendance. However, little is known about the experiences of IACH.</p></div><div><h3>Methods</h3><p>This qualitative project explores the perspectives of 17 parents of 24 IACH in the United States through hour-long semi-structured phone interviews focused on healthcare transition. The purposive sample was recruited from two pediatric infectious disease clinics and private social media sites. Drawing on analytic principles of constant comparison, transcripts were analyzed for emergent themes.</p></div><div><h3>Results</h3><p>Most parents identified as white (<em>n</em> = 16), female (<em>n</em> = 16). Median age of IACH was 16 years. Two had transitioned to adult care. Fourteen did not have a transition plan with their provider. Many parents expressed apprehension regarding the transition to adult care. Anxiety over the ability to communicate with their child’s health provider and lack of comprehensive planning were expressed. Parents also felt their child may feel out of place in the adult infectious disease clinic and emphasized the trusting, long standing relationship with pediatric providers. Participants acknowledged that transition to another provider could be challenging for their child as adult providers may be less aware of adoption-related trauma.</p></div><div><h3>Conclusion</h3><p>It is vital that physicians consider trauma-informed care throughout the transition process with IACH. Providers should support health management-related independence of both IACH and their parents prior to transition. Coordination with adult care providers is key to a successful health care transition.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100010"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49763825","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}
引用次数: 0
Peer support interventions for young adults with inflammatory bowel diseases 患有炎症性肠病的年轻人的同伴支持干预
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100018
Sneha Dave , Amy Bugwadia , Sara Ahola Kohut , Sydney Reed , Mara Shapiro , Hilary K. Michel
{"title":"Peer support interventions for young adults with inflammatory bowel diseases","authors":"Sneha Dave ,&nbsp;Amy Bugwadia ,&nbsp;Sara Ahola Kohut ,&nbsp;Sydney Reed ,&nbsp;Mara Shapiro ,&nbsp;Hilary K. Michel","doi":"10.1016/j.hctj.2023.100018","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100018","url":null,"abstract":"<div><p>The “Roundtable on Young Adults with Inflammatory Bowel Diseases (IBD)” is a year-long learning community organized by the Crohn’s and Colitis Young Adults Network with monthly discussions between healthcare professionals, patients, and community-based partners. The group aims to improve outcomes for the young adult IBD patient population. The roundtable discussion highlighted in this article centered on the critical importance of peer support for adolescents and young adults (AYA) with IBD. The discussion underscored the need for increased research in peer support, the need to further consider peer support as an intervention, and the value of multi-stakeholder, peer-led collaboration in reducing isolation for young adults with IBD. Additionally, the group identified areas of opportunity, such as developing more appropriate metrics and scales to prove the inherent value of peer support for young adults with IBD.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100018"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743771","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}
引用次数: 0
Best practices to support inflammatory bowel disease patients in higher education and the workplace: A clinician’s guide 在高等教育和工作场所支持炎症性肠病患者的最佳实践:临床医生指南
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100017
Sydney Reed , Sneha Dave , Amy Bugwadia
{"title":"Best practices to support inflammatory bowel disease patients in higher education and the workplace: A clinician’s guide","authors":"Sydney Reed ,&nbsp;Sneha Dave ,&nbsp;Amy Bugwadia","doi":"10.1016/j.hctj.2023.100017","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100017","url":null,"abstract":"<div><p>The rising prevalence of inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis, among adolescents and young adults illuminates the growing need for psychosocial and structural support for these patients as they navigate both higher education and entering the workforce. In a roundtable discussion hosted by the Crohn’s and Colitis Young Adults Network (CCYAN), medical professionals (physicians, nurses, psychologists, trainees/medical students) and young adult patients with IBD came together to identify best practices for leveraging existing resources to support patients in higher education and their early careers. The discussion explored the topics of ableism and existing barriers in higher education and the workplace, including accommodation processes and the significance of proactive planning and collaboration between patients and their pediatric or adult care providers; the crucial role of establishing a therapeutic alliance; highlighting the importance of adopting a \"whole person\" care approach and normalizing discussions about the psychosocial facets of IBD; and finally, addressing the challenges associated with disease disclosure to empower patients and further build their self-efficacy.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100017"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743711","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}
引用次数: 0
What it looks like to ‘mind the gaps’ in a Midwest survivorship clinic for childhood cancer survivors 在中西部的儿童癌症幸存者生存诊所里,“注意差距”是什么样子的
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100021
Stijn Hentzen , Taylor Adams , Kyla Alsman , Carolyn R. Bates , Becky Lowry
{"title":"What it looks like to ‘mind the gaps’ in a Midwest survivorship clinic for childhood cancer survivors","authors":"Stijn Hentzen ,&nbsp;Taylor Adams ,&nbsp;Kyla Alsman ,&nbsp;Carolyn R. Bates ,&nbsp;Becky Lowry","doi":"10.1016/j.hctj.2023.100021","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100021","url":null,"abstract":"<div><h3>Background</h3><p>As cancer prevalence increases and treatment improves, the population of childhood cancer survivors (CCS) will see remarkable growth. This population requires guideline-based survivorship care into adulthood; however, numerous gaps in care are common including record documentation, medical knowledge, and access to healthcare. Here we describe the patients seen in a US Midwest survivorship transition clinic (STC) and the aspects of the clinic designed to address the gaps in care this cohort faces.</p></div><div><h3>Methods</h3><p>After IRB approval, a retrospective chart review was completed for patients established in the STC between 2014 and 2022.</p></div><div><h3>Results</h3><p>A total of 261 patients were identified. The patients had an average age of 12 years at the time of cancer diagnosis and an average age of 28 years at clinic establishment. Patients presented from 9 states and 139 zip codes. We identified 42 different primary cancers with acute lymphoblastic leukemia (24.5%) and Hodgkin’s Lymphoma (19.2%) most common. We found that 244 (93.5%) received chemotherapy, 138 (52.9%) received radiation, and 41 (15.7%) underwent bone marrow transplant. Secondary malignancies were diagnosed in 29 (11.1%) patients with breast (23.3%) and thyroid (23.3%) malignancies most common.</p></div><div><h3>Discussion</h3><p>The clinical diversity, complex treatment history, and prevalence of secondary malignancies in this CCS population emphasizes the importance close follow-up and adherence to survivorship guidelines. Through strong local partnerships and a specialized nursing navigator this STC addresses care gaps common in this population. Although limitations persist, STCs are a strong model of care to address the unique care needs of this growing population of complex patients.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100021"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743555","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}
引用次数: 0
The Health Care Transitions Journal: Carpe diem! 医疗保健转型杂志:及时行乐!
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100001
Cecily L. Betz, Maria E. Díaz-González de Ferris
{"title":"The Health Care Transitions Journal: Carpe diem!","authors":"Cecily L. Betz,&nbsp;Maria E. Díaz-González de Ferris","doi":"10.1016/j.hctj.2023.100001","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100001","url":null,"abstract":"","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100001"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743715","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}
引用次数: 0
Development of a transition program for pediatric patients with renal disease 发展儿科肾脏疾病患者的过渡方案
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100014
Sahar Siddiqui , Cortney Taylor Zimmerman , Brittany Garza , Sai Kaumudi Saridey , Constance M. Wiemann
{"title":"Development of a transition program for pediatric patients with renal disease","authors":"Sahar Siddiqui ,&nbsp;Cortney Taylor Zimmerman ,&nbsp;Brittany Garza ,&nbsp;Sai Kaumudi Saridey ,&nbsp;Constance M. Wiemann","doi":"10.1016/j.hctj.2023.100014","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100014","url":null,"abstract":"<div><h3>Background</h3><p>The transition from pediatric to adult health care is challenging for patients with renal disease and inadequate transition can lead to increased disease-related morbidity. We developed a structured health care transition (HCT) program that includes a joint two-step transition clinic; the first step is the pediatric clinic and second step is the adult clinic.</p></div><div><h3>Methods</h3><p>Quality improvement methodology was utilized to establish an interdisciplinary transition team and conduct a needs assessment. Lack of a standardized HCT program was identified as a primary barrier to HCT. We utilized transition team and other stakeholder input to implement a transition program that included a joint pediatric/adult two-step transition clinic. Various other components were developed, including a transition policy and patient and provider feedback surveys. A pilot group of patients with kidney disease participated in the program.</p></div><div><h3>Results</h3><p>27 patients completed the “first step” and 22 patients completed the “second step” of the transition clinic. Median age at the time of transition was 20 years, with kidney transplant (41 %) as the major diagnosis. All patients (100 %) received the transition policy and reported that the transition team worked with them to gain skills to manage their health and plan for the future. Pediatric and adult nephrologists reported feeling satisfied (100 %) with the transition program.</p></div><div><h3>Conclusion</h3><p>A structured transition program was established utilizing expertise of a dedicated transition team and was well received by participants. This program is a critical first step in addressing the gap in standardized care for transition for pediatric patients with kidney disease.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100014"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743863","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}
引用次数: 0
Health status and health care utilization profiles of adolescents with disabilities 残疾青少年的健康状况和保健利用情况
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100004
Shauna Kingsnorth , Yani Hamdani , Clare Cheng , Sally Lindsay , Joanne Maxwell , Angela Colantonio , Mark Bayley , Colin Macarthur
{"title":"Health status and health care utilization profiles of adolescents with disabilities","authors":"Shauna Kingsnorth ,&nbsp;Yani Hamdani ,&nbsp;Clare Cheng ,&nbsp;Sally Lindsay ,&nbsp;Joanne Maxwell ,&nbsp;Angela Colantonio ,&nbsp;Mark Bayley ,&nbsp;Colin Macarthur","doi":"10.1016/j.hctj.2023.100004","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100004","url":null,"abstract":"<div><h3>Background</h3><p>Adolescents with physical disabilities of childhood often require a transition from pediatric to adult systems as part of life-long, comprehensive health care once they reach 18 years of age. The process of transition can be complex, challenging, and influenced by health-related factors and availability of health care resources.</p></div><div><h3>Objective</h3><p>To provide a baseline profile of health-related quality of life, health management, social participation, and health care utilization for adolescents 16 years of age with spina bifida (SB), acquired brain injury (ABI), or cerebral palsy (CP) in Toronto, Canada.</p></div><div><h3>Methods</h3><p>A cross-sectional survey design was used. A sample was drawn from a large, urban pediatric rehabilitation hospital as part of a prospective, longitudinal, observational mixed-methods study. Seven English language, paper-copy standardized measures were completed; measures were organized across the three domains of interest. Health care utilization data were obtained from population-based, health services administrative datasets held by ICES. These data included outpatient physician visits, emergency department visits, and hospitalizations over a 12-month period, beginning at their 16th birthday.</p></div><div><h3>Results</h3><p>The sample comprised 99 participants: survey measures were completed by 59 participants (12 SB, 19 ABI, and 28 CP) and health care utilization obtained for 92 participants (19 SB, 25 ABI, and 48 CP). Baseline scores across measures and rates of health care utilization are provided. All three groups reported relatively good health-related quality of life. Youth with CP had lower scores on health utility, health management, and social participation, compared with the SB and ABI groups. Youth with SB had slightly higher health care utilization in the 12-month period after their 16th birthday, compared with the ABI and CP groups.</p></div><div><h3>Conclusions</h3><p>This cross-sectional survey collected comprehensive health status and health care utilization data on 16-year-old youth with SB, ABI, and CP in Toronto, Canada. With few exceptions, the CP group consistently scored lower across measurement domains. These baseline data may be useful for hospital administrators, policy makers, and researchers examining changes in health-related quality of life, health management, social participation, and health care utilization among youth with SB, ABI, and CP, particularly in the context of transition planning and evaluation.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100004"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49744039","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}
引用次数: 0
Asthma patients' perspectives on telehealth in disease management: A focus group study 哮喘患者在疾病管理中对远程医疗的看法:一项焦点小组研究
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100008
Yu seon Sarah Chae , Noah Tregobov , Austin McMillan , Celine Bergeron , Iraj Poureslami
{"title":"Asthma patients' perspectives on telehealth in disease management: A focus group study","authors":"Yu seon Sarah Chae ,&nbsp;Noah Tregobov ,&nbsp;Austin McMillan ,&nbsp;Celine Bergeron ,&nbsp;Iraj Poureslami","doi":"10.1016/j.hctj.2023.100008","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100008","url":null,"abstract":"<div><h3>Objectives</h3><p>While the effectiveness of telehealth (TH) to improve health outcomes is well established, the utility of <em>e</em>health care among adult asthma patients, particularly in patients with limited access to specialty lung clinic services, requires further investigation. This study aimed to explore asthma patients’ perceived applicability of TH in asthma self-management practices, to inform a future TH-based interventional study.</p></div><div><h3>Methods</h3><p>A qualitative exploratory study design was applied during virtual, patient-orientedfocus group sessions and individual telephone interviews. Participants responded to questions spanning 4 main topics: 1) understanding of and beliefs on TH; 2) perceptions about the application of electronic asthma action plans; 3) using tele-communication to interact with a care provider; and 4) prospective TH features for asthma management. Data were collected from 25 patients with asthma (19 attended one of two focus groups and 6 were interviewed individually). Codes and definitions were developed inductively and assembled into a coding framework. Transcripts were subsequently coded, and thematic analysis was performed.</p></div><div><h3>Results</h3><p>Group discussions and individual interviews generated 4 TH-related themes: 1) past experiences and future use of TH; 2) perceived advantages and disadvantages of TH in asthma management; 3) integration of TH into self-management practices; and 4) features of a practical TH model for the current healthcare system.</p></div><div><h3>Conclusion</h3><p>Participants input in the design of TH interventions for asthma management could improve access to and quality of virtual care services.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100008"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49763822","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}
引用次数: 0
A mixed-methods study of autistic adults’ healthcare independence over time 自闭症成人医疗保健独立性随时间变化的混合方法研究
Health Care Transitions Pub Date : 2023-01-01 DOI: 10.1016/j.hctj.2023.100029
Daniel Gilmore , Deondray Radford , Alex Coyne , Christopher Hanks , Daniel L. Coury , Amy Hess , Jennifer H. Garvin , Brittany N. Hand
{"title":"A mixed-methods study of autistic adults’ healthcare independence over time","authors":"Daniel Gilmore ,&nbsp;Deondray Radford ,&nbsp;Alex Coyne ,&nbsp;Christopher Hanks ,&nbsp;Daniel L. Coury ,&nbsp;Amy Hess ,&nbsp;Jennifer H. Garvin ,&nbsp;Brittany N. Hand","doi":"10.1016/j.hctj.2023.100029","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100029","url":null,"abstract":"<div><h3>Background</h3><p>Healthcare independence refers to an individual’s ability to participate in and manage their healthcare by using specific skills like communicating with providers and scheduling appointments. Understanding healthcare independence among autistic young adults is important to designing healthcare systems that provide equitable support for autistic people throughout their lives.</p></div><div><h3>Objective</h3><p>To quantify changes in autistic adults’ healthcare independence over time and understand factors associated with change in healthcare independence.</p></div><div><h3>Methods</h3><p>We administered a measure of healthcare skills, the Transition Readiness Assessment Questionnaire (TRAQ), to n = 27 autistic young adults who provided a self-report, and n = 21 autistic young adults who participated via proxy-report by supporters, at one autism-specialized primary care clinic. Participants completed the TRAQ at baseline, six months, and 12 months. We used repeated measures generalized linear mixed models to quantify changes in healthcare independence over time, controlling for demographic factors, executive functioning, restrictive and repetitive behaviors, and number of clinic visits. To understand factors associated with change in healthcare independence, we completed follow-up semi-structured interviews with n = 6 autistic young adults and n = 5 supporters of autistic young adults.</p></div><div><h3>Results</h3><p>Autistic young adults who participated via self-report showed statistically significantly increases in healthcare independence between baseline and 12 months and between six months and 12 months, and significant increases on most TRAQ subdomains over time (e.g., appointment keeping, managing medications). Autistic young adults who participated via proxy-report showed no significant changes in healthcare independence over time, and significant improvement on the management of activities subdomain between baseline and 12 months. Changes in healthcare independence were associated with interactions with providers, individual health changes, consistent support needs, and community resources.</p></div><div><h3>Conclusions</h3><p>At one autism-specialized primary care clinic, some autistic young adults may demonstrate improvements in healthcare independence, but other autistic young adults may require additional support strategies to increase healthcare independence. Future studies among larger samples are needed to obtain generalizable understanding of healthcare independence for autistic adults.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100029"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000296/pdfft?md5=da67833e28293b317cf22c78f53e9e7a&pid=1-s2.0-S2949923223000296-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92025612","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}
引用次数: 0
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