Health Care Transitions最新文献

{"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}

{"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}

{"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}

{"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}

{"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}

{"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}

{"title":"Sickle cell disease and adolescents’ perspectives on self-care management resources","authors":"Dora L. Clayton-Jones ,&nbsp;Jill B. Hamilton ,&nbsp;Kristin Haglund ,&nbsp;Lee Za Ong ,&nbsp;Kalen C. Kennedy ,&nbsp;Sylvia Pena ,&nbsp;Latoya Stamper ,&nbsp;Coretta Jenerette","doi":"10.1016/j.hctj.2023.100026","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100026","url":null,"abstract":"<div><h3>Background</h3><p>Adolescents with sickle cell disease (SCD) face unique challenges, especially during the critical health care transition from pediatric to adult care. The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their move into the adult health care system.</p></div><div><h3>Methods</h3><p>Guided by the Theory of Self-Care Management for Sickle Cell Disease, this qualitative descriptive study used semi-structured interviews with 11 adolescents with SCD (M = 16.63 years, SD = 1.15). In addition to a demographic survey, adolescents answered interview questions about their perceptions of their self-care management, health care transition readiness, support, and spiritual well-being. Data were analyzed using a template analysis style.</p></div><div><h3>Results</h3><p>Four major themes were identified: attaining vocational aspirations, maintaining effective self-care management strategies, managing and maintaining social support, and building resilience through spirituality and religion. Maintaining, effective self-care management strategies had three threads: coping behaviors, health care transition needs, and self-care management strengths.</p></div><div><h3>Discussion</h3><p>Identifying self-care management resources and areas where further attention is needed can be helpful for health care providers when developing age specific plans. A tailored approach to care during this critical health care transition period can also build capacity for a successful transition for adolescents.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100026"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000260/pdfft?md5=579584d10bf0b205e8307f90f66ba02e&pid=1-s2.0-S2949923223000260-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92025770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transition practices of college students with a mental health disorder","authors":"Cara C. Young ,&nbsp;Susan J. Calloway ,&nbsp;Nani Kim","doi":"10.1016/j.hctj.2023.100020","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100020","url":null,"abstract":"<div><h3>Objective</h3><p>To explore transition practices, mental health promotion, and psychological health among college students with a mental health disorder.</p></div><div><h3>Participants</h3><p>data were collected from college students attending a southwestern university.</p></div><div><h3>Methods</h3><p>a web-based survey of transition practices, mental health promotion activities, and psychological health (i.e., self-efficacy, life satisfaction, and loneliness). A semi-structured interview was offered to all participants.</p></div><div><h3>Results</h3><p>A total of 140 participants (M age = 20.67 [SD=1.88]) completed the survey and N=29 (M age = 20.24 [SD=1.84] completed a semi-structured interview. When preparing for the transition into college, participants frequently considered geographical distance from home, living in a dormitory setting, and the student orientation/integration process. After entering a university, the student counseling center was accessed by 20.2% while only 6.4% filed for 504 accommodations. All participants considered having a close friend as important for mental health promotion.</p></div><div><h3>Conclusions</h3><p>A formal process of transition planning as it related to optimizing mental health was not consistently undertaken. Proactive transition interventions for college-bound students with a mental health disorder are needed and could include planning for ways to become involved in campus life and filing 504 accommodations to support academic success.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100020"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49743557","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":"What adult gastroenterologists should know about young adults with IBD: Navigating transition of care for young adults with IBD","authors":"Sydney Reed ,&nbsp;Linda Yoo ,&nbsp;Amy Bugwadia ,&nbsp;Navin Kariyawasam ,&nbsp;Sneha Dave","doi":"10.1016/j.hctj.2023.100016","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100016","url":null,"abstract":"<div><p>The transition from pediatric to adult care for young adults with inflammatory bowel diseases (IBD) presents unique challenges that can impact the quality of care and patient outcomes. This article summarizes the discussions held during the Roundtable on Young Adults with IBD, focusing on essential information for adult-care providers dealing with patients in transition. Key areas of focus include readiness for transition, effective communication between pediatric and adult providers, transfer of responsibility and care management from caregivers to patients, reforming systems that complicate the transition process, and the importance of support interventions. Addressing these considerations can help healthcare professionals navigate the complexities of transitioning young adults with IBD, ensuring a smoother and more supportive journey into adulthood.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100016"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49744140","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":"Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study","authors":"Tyra C. Girdwood ,&nbsp;Jennifer L. Goralski ,&nbsp;Maria E. Ferris ,&nbsp;Mary R. Lynn ,&nbsp;Elisabeth P. Dellon ,&nbsp;Kirsten Kainz ,&nbsp;Mark P. Toles","doi":"10.1016/j.hctj.2023.100011","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100011","url":null,"abstract":"<div><h3>Purpose</h3><p>Medical advances have increased the life expectancy of adolescents and young adults (AYA) with cystic fibrosis (CF) and importance of high-quality health care transitions (HCT) from pediatric-to-adult focused health care. The purpose of this study was to describe perceptions of HCT readiness among caregivers and AYA with CF during the COVID-19 pandemic.</p></div><div><h3>Design and methods</h3><p>Using a qualitative descriptive design, caregivers and AYA aged 12–21 years old were recruited from three large CF care centers across the eastern U.S. Data were collected using an online questionnaire with open ended and closed ended questions. Survey topics were: perceptions of HCT readiness, actions to prepare for HCT, and the impact of COVID-19. Results were interpreted using an adapted framework of the Health Care Transition Research Consortium Model and qualitative content analysis.</p></div><div><h3>Results</h3><p>The sample included 73 caregivers (62 mothers) and 34 AYA (24 female, mean age 15.5 years). Three attributes of HCT readiness were identified from caregiver and AYA perceptions: (1) strong concerns that AYA lacked readiness to manage self-care needs in the future, (2) gaps in resources hindered ongoing efforts to enhance transition readiness, and (3) COVID changes created new barriers and facilitators to health care transition readiness.</p></div><div><h3>Conclusions</h3><p>Caregivers and AYA felt they lacked readiness for HCT, they worried about worsening outcomes in adult-focused care, and they were challenged by the onset of the COVID-19 pandemic.</p></div><div><h3>Practical implications</h3><p>These findings provide a solid description of perceived transition readiness during a pandemic that may enhance transitional care design.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"1 ","pages":"Article 100011"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49763839","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}