Health Care Transitions最新文献

{"title":"Transition experiences of adolescents and young adults working with a patient navigator","authors":"Daniella San Martin-Feeney ,&nbsp;Sophie Samborn ,&nbsp;Brooke Allemang ,&nbsp;Megan Patton ,&nbsp;Zoya Punjwani ,&nbsp;Ken Pfister ,&nbsp;Laurel Ryan ,&nbsp;Gregory M.T. Guilcher ,&nbsp;Lorraine Hamiwka ,&nbsp;Scott Klarenbach ,&nbsp;Eddy Lang ,&nbsp;Kerry McBrien ,&nbsp;Alberto Nettel-Aguirre ,&nbsp;Danièle Pacaud ,&nbsp;Jorge Pinzon ,&nbsp;Shannon D. Scott ,&nbsp;Lonnie Zwaigenbaum ,&nbsp;Curtis Perrott ,&nbsp;John Andersen ,&nbsp;Gail Andrew ,&nbsp;Gina Dimitropoulos","doi":"10.1016/j.hctj.2024.100088","DOIUrl":"10.1016/j.hctj.2024.100088","url":null,"abstract":"<div><h3>Introduction</h3><div>The transition from pediatric to adult care poses challenges for adolescents and young adults (AYA) with chronic conditions and their caregivers. A patient navigator (PN) intervention may mitigate transition-related barriers.</div></div><div><h3>Methods</h3><div>A qualitative study was conducted within a pragmatic randomized controlled trial. A purposive sample was recruited of AYA with diverse diagnostic and demographic characteristics who worked with the PN and/or their caregivers. Seventeen participants completed semi-structured interviews at baseline and post-intervention and optional journal entries. Thematic analysis was used inductively.</div></div><div><h3>Results</h3><div>Analysis yielded two themes from baseline interviews: 1) uncertainty and hesitation with leaving a place of support, 2) navigator assistance with post-secondary education, and three themes from post-intervention interviews: 1) emotional support, 2) informational and task-focused support, 3) navigator guidance to become more independent.</div></div><div><h3>Discussion</h3><div>Our findings describe the needs of AYA and the experience of PN support; our findings may guide future implementation of PNs in transition care.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100088"},"PeriodicalIF":0.0,"publicationDate":"2024-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142747898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Self-perceived importance and confidence of adolescents transitioning to adult care","authors":"Lisa Lestishock ,&nbsp;Carrie Cuomo ,&nbsp;Teresa Hickam ,&nbsp;Tisa Johnson-Hooper ,&nbsp;Michele Maddux ,&nbsp;Evan Muzzall ,&nbsp;Margaret McManus ,&nbsp;Patience White","doi":"10.1016/j.hctj.2024.100086","DOIUrl":"10.1016/j.hctj.2024.100086","url":null,"abstract":"<div><h3>Purpose</h3><div>Motivational interviewing (MI) techniques are used by health care teams to engage adolescents and young adults (AYAs) in health care self-management and pediatric to adult health care transition (HCT) planning efforts. The aim of this study was to assess the initial level of motivation of AYAs prior to receipt of HCT anticipatory guidance and to determine associations with demographic and health coverage factors.</div></div><div><h3>Methods</h3><div>This retrospective study included 5112 AYAs, aged 12–26 years, from four health systems. All AYAs completed the Got Transition readiness assessment that includes MI questions on importance and confidence related to the move to an adult provider.Independent variables included demographic and health coverage factors: age, sex, race, ethnicity, language, and insurance type. The statistical approach included summary statistics, chi-square tests of independence and log-likelihood ratio tests, and generalized linear models and contrasts.</div></div><div><h3>Results</h3><div>The study results demonstrate initial trends in importance and confidence scores for AYAs before they became part of a HCT planning process. Importance scores increased from 12-14 through 18–20 years of age, then decreased in the 21–26-year group. Confidence scores increased from the 12–14 through the 21–26-year group.Confidence scores were generally higher than importance scores and were accompanied by smaller standard deviations. Ethnicity and insurance type also demonstrated an association with MI scoring.</div></div><div><h3>Discussion</h3><div>This study provides baseline scores on two key MI importance and confidence questions that can facilitate clinician understanding of AYA engagement in discussing the changes needed to move to adult care and guides the clinician to start earlier than just before transfer that often occurs around age 21.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100086"},"PeriodicalIF":0.0,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142721093","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":"Experiences of barriers and facilitators in mental health care transitions: A qualitative exploration of perspectives from transitional-aged youth, family, and service providers (part 1)","authors":"Roula Markoulakis ,&nbsp;Hinaya Cader ,&nbsp;Karen Wong ,&nbsp;Sugy Kodeeswaran ,&nbsp;Tracey Addison ,&nbsp;Cathy Walsh ,&nbsp;Jocelyn Charles ,&nbsp;Amy Cheung ,&nbsp;Deepy Sur ,&nbsp;David Willis ,&nbsp;Anthony Levitt","doi":"10.1016/j.hctj.2024.100087","DOIUrl":"10.1016/j.hctj.2024.100087","url":null,"abstract":"<div><h3>Introduction</h3><div>Transitional-aged youth (TAY) are at a vulnerable stage of their development in which mental health and/or addiction (MHA) issues tend to manifest and/or increase in severity. TAY also tend to find themselves subject to multiple care transitions, often resulting in sub-optimal access to MHA services. The objective of this study was to explore the perspectives of TAY, family members, and system providers regarding the supports needed by TAY and their families during transitions through MHA care.</div></div><div><h3>Methods</h3><div>This is a descriptive qualitative study of TAY, family, and provider perspectives on their experiences with accessing/providing MHA care and transition supports for TAY. Focus groups and interviews were conducted with 14 TAY, 26 family members, and 23 service providers. Participants were asked about their experiences with regard to barriers and facilitators to transitions in care for TAY with MHA concerns. Data was analyzed utilizing a thematic analysis approach.</div></div><div><h3>Results</h3><div>Six themes emerged during data analysis: pathways to care, appropriate and comprehensive care, continuity of care, informed care, family involvement, and TAY involvement. These results provide a better understanding of the needs of TAY and their families in relation to accessing and transitioning through MHA system supports and improving MHA outcomes. They also include the views of service providers on the current state of access to and transitions through MHA care, specifically for the TAY population.</div></div><div><h3>Discussion</h3><div>This information reveals the supports needed by TAY and their families along with the challenges created due to a lack of guidance, transition preparation, collaboration, and continuity in the MHA system. MHA providers working with TAY and families can utilize these findings to promote effective TAY and family engagement for positive transitions and care experiences.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100087"},"PeriodicalIF":0.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142721094","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 role of navigation services in supporting mental health and addictions care transitions: A qualitative exploration of perspectives from transitional-aged youth, family, and service providers (part 2)","authors":"Roula Markoulakis ,&nbsp;Hinaya Cader ,&nbsp;Karen Wong ,&nbsp;Sugy Kodeeswaran ,&nbsp;Tracey Addison ,&nbsp;Cathy Walsh ,&nbsp;Jocelyn Charles ,&nbsp;Amy Cheung ,&nbsp;Deepy Sur ,&nbsp;David Willis ,&nbsp;Anthony Levitt","doi":"10.1016/j.hctj.2024.100082","DOIUrl":"10.1016/j.hctj.2024.100082","url":null,"abstract":"<div><h3>Introduction</h3><div>Transitional-aged youth (TAY) are at a vulnerable stage of their development in which mental health and/or addiction (MHA) issues tend to manifest and/or increase in severity. These youth also tend to find themselves caught in the gap between child and adult MHA services, often resulting in sub-optimal access to and transition through MHA services. Navigation services may be one way to close this and other system gaps and improve service utilization and supports for TAY. The objective of this study was to explore the perspectives of TAY, family members, and system providers regarding the support that can be provided by navigation services in addressing the needs and barriers encountered during transitions in MHA care.</div></div><div><h3>Methods</h3><div>This is a descriptive qualitative study of TAY, family, and provider perspectives on the role of navigation as it pertains to transitions in care for TAY with MHA concerns. Focus groups and semi-structured interviews were conducted with 63 participants with varying levels of familiarity with navigation. Participants were asked about their experiences with navigating transitions through the MHA system and their views on the role of navigation services in supporting transitions in care. Data was analyzed utilizing a thematic analysis approach.</div></div><div><h3>Results</h3><div>Five themes emerged during data analysis: navigation to traverse difficult pathways, navigation to ensure appropriate and comprehensive care, navigation to sustain continuity of care, navigation to support informed care, and navigation to facilitate TAY and family involvement.</div></div><div><h3>Discussion</h3><div>These findings contribute to an understanding of how navigation services can be meaningful in mitigating the challenges faced by TAY and their families when seeking help for MHA issues. Navigation services have the potential to support MHA system transformation for enhanced transitions in care for TAY with MHA concerns and their families.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100082"},"PeriodicalIF":0.0,"publicationDate":"2024-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142707038","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":"Bolstering connectedness through peer support: Randomized-controlled trial of a web-based peer support program for adolescents with inflammatory bowel disease","authors":"Meghan K. Ford ,&nbsp;Armanda Iuliano ,&nbsp;Thomas D. Walters ,&nbsp;Anthony R. Otley ,&nbsp;David R. Mack ,&nbsp;Kevan Jacobson ,&nbsp;Jason D. Rights ,&nbsp;Dean A. Tripp ,&nbsp;Jennifer N. Stinson ,&nbsp;Sara Ahola Kohut","doi":"10.1016/j.hctj.2024.100085","DOIUrl":"10.1016/j.hctj.2024.100085","url":null,"abstract":"<div><h3>Background</h3><div>Inflammatory bowel disease (IBD) is a chronic autoimmune disease often diagnosed during adolescence. IBD negatively impacts all aspects of health-related quality of life, resulting in physical, emotional, social, school, and work functioning challenges. Adolescents have identified the need for peer support in managing their disease and promoting positive health outcomes. However, studies have yet to explore the peer support needs of this population. The study aimed to capture whether a peer mentoring program (iPeer2Peer©) was successful at improving adolescent disease self-management. The study also aimed to understand the lived experiences of adolescents participating in iPeer2Peer©.</div></div><div><h3>Methods</h3><div>Adolescents with IBD were recruited from three tertiary hospitals in Canada. The study adopted a waitlist pilot randomized control trial (RCT) with participants randomly allocated to the intervention (iPeer2Peer© program) or control group. Participants completed questionnaire measures at baseline and post-program examining self-reported self-management, self-efficacy, emotional distress, social support, and health-related quality of life. A subset of intervention participants were randomly invited post-program to participate in a semi-structured interview to examine mentee program experiences</div></div><div><h3>Results</h3><div>The quantitative analyses showed no significant differences between the intervention and control group. Three themes were identified in the qualitative analysis: 1) forming a connection over shared experiences and beyond, 2) improving mentee program experience, and 3) program flexibility.</div></div><div><h3>Conclusion</h3><div>Despite the lack of significant quantitative outcomes, qualitative data suggests peer support for adolescents with IBD adds value to IBD care by developing a sense of belonging with peers who share lived experiences. This study demonstrates the complexity of mentee psychosocial needs and challenges in measuring outcomes in peer support research. Clinical implications and future research opportunities are discussed.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100085"},"PeriodicalIF":0.0,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142707037","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":"C. Betz, M. E. Díaz-González de Ferris","doi":"10.1016/j.hctj.2024.100045","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100045","url":null,"abstract":"","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"71 10","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139888199","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":"An exploration of anxiety and depressive symptoms among sexual and gender minority young adults visiting a drop-in center for youth experiencing homelessness","authors":"Lourence Misedah-Robinson ,&nbsp;Laura Witte ,&nbsp;Elizabeth Henneke ,&nbsp;MaDonna Land ,&nbsp;Vanessa Schick","doi":"10.1016/j.hctj.2024.100055","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100055","url":null,"abstract":"<div><h3>Background</h3><p>Research suggests that marginalized young adults, particularly sexual and gender minorities (SGM), face distinctive healthcare transition challenges. SGM often navigate a complex intersection of identities, experiences, and stressors that can contribute to mental health disparities. However, they often lack access to appropriate support and resources tailored to their needs, which can result in increased psychological distress. Drop-in centers are effective mental health interventions for marginalized communities. Therefore, we conducted a study to explore the healthcare access experiences and mental health outcomes of young adult SGM compared to their non-SGM counterparts.</p></div><div><h3>Methods</h3><p>We surveyed 151 young adults aged 18–25 who visited two drop-in centers for young adults experiencing homelessness in Houston, Texas, between October and November 2018. Depressive and anxiety symptoms were assessed using Patient Health Questionnaire- 4 (PHQ-4.ther variables included demographics, prior mental health diagnosis, and experiences of homelessness and involvement in justice.</p></div><div><h3>Results</h3><p>Transgender and gender-diverse individuals had higher proportions of anxiety symptoms than their cisgender counterparts, while gay and lesbian individuals were more likely to experience depressive symptoms. In general, SGM individuals were three times more likely to report a previous anxiety diagnosis and four times more likely to report a previous depression diagnosis than their non-SGM counterparts. However, we did not find a significant association between having anxiety or depressive symptoms with seeking healthcare, experiences of homelessness, and justice involvement.</p></div><div><h3>Conclusion</h3><p>The findings suggest that drop-in centers can provide targeted care for SGM youth with intersecting needs, thus improving their mental health outcomes. Nevertheless, more research is needed to understand further and inform more targeted and effective evidence-based interventions that support SGM young adults across the trajectory of experiences, changing needs, and care coordination over time during this critical and vulnerable transition to adulthood.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100055"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000151/pdfft?md5=2287a7849f2c88840b19e74ca0f4d2ee&pid=1-s2.0-S2949923224000151-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140122177","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":"Wellbeing measurement among adults with Charcot-Marie-Tooth disease","authors":"Payton D. Rule,&nbsp;Megan W. Wolk,&nbsp;Patrick L. Hill","doi":"10.1016/j.hctj.2024.100053","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100053","url":null,"abstract":"<div><h3>Background and aims</h3><p>Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing.</p></div><div><h3>Methods</h3><p>In 2021, we recruited 288 US adults with CMT (<span><math><msub><mrow><mi>M</mi></mrow><mrow><mi>Age</mi></mrow></msub></math></span> = 60 years, 59% Female, 93% White) to take part in an online survey. Participants were presented with validated wellbeing and health measures, in addition to newly created measures specific to CMT, and then asked to provide free-response feedback about aspects of their lived experiences missing from these measures. Thematic analysis were applied to the free-response data to identify CMT-related difficulties that may impact wellbeing among adults with CMT.</p></div><div><h3>Results</h3><p>Results identified nine CMT-related challenges that are important to individuals with CMT and are often left out of wellbeing assessments in this population. The three most common themes identified were anxiety or worry, coping with loss of function or progression, and difficulty finding knowledgeable medical providers. Further, some aspects of the CMT experience may be comorbid.</p></div><div><h3>Interpretation</h3><p>These results can be used to inform future research and clinical practice in the CMT population.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100053"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000138/pdfft?md5=3dc8405b9d0a5a75c9eb7d0f91f22e81&pid=1-s2.0-S2949923224000138-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139986520","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":"What skills do adolescents and young adults desire as they prepare for adult health care?","authors":"Megan Patton ,&nbsp;Daniella San Martin-Feeney ,&nbsp;Brooke Allemang ,&nbsp;Zoya Punjwani ,&nbsp;Sophie Samborn ,&nbsp;Ken Pfister ,&nbsp;Laurel Ryan ,&nbsp;Andrew S. Mackie ,&nbsp;Susan Samuel ,&nbsp;Gina Dimitropoulos","doi":"10.1016/j.hctj.2024.100049","DOIUrl":"https://doi.org/10.1016/j.hctj.2024.100049","url":null,"abstract":"<div><h3>Background</h3><p>The transition from pediatric to adult care is a period associated with adverse health outcomes (e.g., health care dropout, health deterioration and poor adherence to management) for adolescents and young adults (AYA) with chronic conditions and their caregivers. AYA and caregivers often struggle to adapt to adult care settings resulting from a lack of preparedness and difficulties accessing services to manage their health conditions. To adequately design transition interventions and supports, it is critical to explore what skills AYA think would increase their confidence and ability to successfully move into adult health care.</p></div><div><h3>Methods</h3><p>The Transition Navigator Trial is a randomized controlled trial being conducted in Alberta, Canada, recruiting from three major tertiary care pediatric centers, in which half of participants receive a patient navigator, whose goal is to assist with this transition. Twenty-seven youth were interviewed at baseline, with a planned follow-up interview at the end of the trial. Participants were asked about their perspectives on the upcoming transition and how working with the navigator may assist with the transfer to adult-oriented services. Using an inductive approach to thematic analysis, baseline interviews were analyzed to explore AYA perspectives on their wants and needs for an upcoming transition to adult health care. The overarching guiding question is: what skills do AYA desire to assist with the transition to adult health care services?</p></div><div><h3>Results</h3><p>Two broad themes were generated based on participant baseline interviews: 1) ownership of care; and 2) system navigation. Participants identified that self-management and self-advocacy skills are essential for taking ownership of their own healthcare. Participants identified that even when they have acquired the necessary skills to take ownership of their care, there is a further step of system navigation that they might require external help with.</p></div><div><h3>Conclusions</h3><p>It has been highlighted in the literature that health-related knowledge, self-advocacy, and self-management skills promote a more successful transition, however, a gap exists in what youth prioritize as important skills. These findings exemplify that AYA want to gain skills that will allow for independence and success in the transition to adult health care. By involving youth in the development of future transition interventions, we can better understand the needs and priorities of AYA to assist in the success of transition to adult health care.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100049"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923224000096/pdfft?md5=058e94317f7e5a29ce998a7be863c5f3&pid=1-s2.0-S2949923224000096-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139908102","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":"Role of primary care for individuals with childhood-onset neurologic conditions","authors":"Miho Osako ,&nbsp;Yui Yamaoka ,&nbsp;Yoko Mochizuki ,&nbsp;Takeo Fujiwara","doi":"10.1016/j.hctj.2023.100037","DOIUrl":"https://doi.org/10.1016/j.hctj.2023.100037","url":null,"abstract":"<div><h3>Background</h3><p>Individuals with childhood-onset neurologic conditions often face challenges in the pediatric-to-adult health care transition (HCT). Furthermore, the importance of implementing primary care is unrecognized. We investigated the situation of adults with childhood-onset neurologic conditions from the perspective of health care professionals (HCPs) in community- and hospital-based primary care practice.</p></div><div><h3>Design and methods</h3><p>Overall, 1334 HCPs in medical facilities across Tokyo (mainly in Kita, Nerima, and Itabashi Cities) were surveyed regarding their experience caring for adults with childhood-onset neurologic conditions. Snowball sampling was also deployed to enhance the input from various health professions. The questionnaire included quick response codes linked to web-based questionnaires identical to paper-based ones, enabling additional HCPs to answer the questionnaire. The survey included questions about the care provided by HCPs, the perceived challenges and worthwhileness of the care, and their views on HCT.</p></div><div><h3>Results</h3><p>We collected 276 responses (response rate, 20.7%): 224 by mail and 52 online. In total, 94 HCPs of the respondents (75 doctors, 11 nurses, 5 therapists, 2 care workers, and 1 medical social worker) involved in caring for this population were analyzed. Doctors and nurses managed medical devices, educated patients, and provided consultation and care. Doctors cited the management of comorbidities outside of their expertise and difficulties securing hospitalization during emergencies as barriers to care. HCPs found the valuable opportunities to enrich their clinical experience and long-term relationships with patients worthwhile. HCPs expressed the need for systems that guarantee patient hospitalization and multidisciplinary conferences between HCPs and specialists.</p></div><div><h3>Conclusion</h3><p>We described the roles of HCPs in community- and hospital-based primary care, which are vital components of HCT for adults with childhood-onset neurologic conditions. Their practice includes multidisciplinary involvement, patient education, and care coordination. For better HCT in this population, efforts are required to enhance HCPs’ capability to respond to patients with disabilities, patients’ multiple comorbidities, and families’ needs.</p></div><div><h3>Practice implications</h3><p>Further efforts to deepen community-based care are desired to improve HCT for people with childhood-onset neurologic conditions.</p></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"2 ","pages":"Article 100037"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2949923223000375/pdfft?md5=c5c057b3cb4ff0f199618b0c2099209f&pid=1-s2.0-S2949923223000375-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139107369","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}