Blanca Sanchez-Fournier , Jordyn Babla , Mary Majumder , Beth H. Garland , Constance M. Wiemann , Albert C. Hergenroeder
{"title":"Adolescent and Caregiver preparation for legal changes at age 18","authors":"Blanca Sanchez-Fournier , Jordyn Babla , Mary Majumder , Beth H. Garland , Constance M. Wiemann , Albert C. Hergenroeder","doi":"10.1016/j.hctj.2025.100106","DOIUrl":"10.1016/j.hctj.2025.100106","url":null,"abstract":"<div><h3>Background</h3><div>Most adolescents with special healthcare needs (ASHCN) will assume legal responsibility for making decisions about their medical treatment at age 18. Simultaneously, parents or other legal representatives (Caregivers) will lose ASHCN medical record access. This study examined ASHCN and Caregiver knowledge of, satisfaction with, and suggestions for improvement in preparing for these changes.</div></div><div><h3>Methods</h3><div>Eighty-three dyads (18-year-old ASHCN and Caregivers) completed an assessment to evaluate their knowledge about changes in responsibility for decision making with a focus on consent, satisfaction with the preparation received, and recommendations for improved preparation. Descriptive statistics and mean comparisons were used. Responses to open-ended questions were coded by an interdisciplinary team.</div></div><div><h3>Results</h3><div>ASHCN and Caregivers did not significantly differ (70 % vs. 66 %, p > 0.05) in their overall knowledge of legal changes that occurred at age 18. Less than half of ASHCN and Caregivers reported being very satisfied with the preparation they received before turning 18. ASHCN would have wanted to practice skills, know more information, and be more actively engaged in their healthcare. Caregivers desired more information/communication from the healthcare team, opportunities for ASHCN to practice skills, and recognition that not every 18-year-old is ready to assume self-management. A subset of ASHCN and Caregivers felt well prepared.</div></div><div><h3>Conclusions</h3><div>Many ASHCN and Caregivers are not adequately prepared for the legal changes in responsibility for healthcare decision-making and access to information that occur at age 18. Interventions to promote a clear understanding of these changes while providing opportunities for ASHCN to practice self-management skills before age 18 are needed.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100106"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144261821","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}
Annouschka Weijsenfeld RN, MSc , Linda van der Knaap RN, MSc , Jane Sattoe PhD , AnneLoes van Staa MD PhD , Clementien Vermont MD PhD , Jeannine F.J.B. Nellen MD, PhD , Dasja Pajkrt MD, PhD, MBA
{"title":"Transition experiences of young adults with perinatal HIV in the Netherlands","authors":"Annouschka Weijsenfeld RN, MSc , Linda van der Knaap RN, MSc , Jane Sattoe PhD , AnneLoes van Staa MD PhD , Clementien Vermont MD PhD , Jeannine F.J.B. Nellen MD, PhD , Dasja Pajkrt MD, PhD, MBA","doi":"10.1016/j.hctj.2025.100098","DOIUrl":"10.1016/j.hctj.2025.100098","url":null,"abstract":"<div><h3>Introduction</h3><div>The process of transition from paediatric to adult care is a crucial step towards self-management of healthcare for young adults with chronic health conditions. In the Netherlands, the On Your Own Feet program offers an extensive framework for supporting optimal transition. In this national study, we aimed to evaluate the transition experiences of young adults with perinatal HIV who transferred from a paediatric to an adult HIV treatment centre.</div></div><div><h3>Methods</h3><div>Participants who transferred to adult care less than six years ago received questionnaires on transition experiences, the validated On Your Own Feet – Transition Experiences Scale (OYOF-TES), and demographics. Demographic and healthcare-related variables were collected from patients’ medical files. We explored correlations between OYOF-TES scores and other variables.</div></div><div><h3>Results</h3><div>Of 44 participants, 29 responded (65.1 %). Their median age was 20 (IQR 19–23). Overall, high scores were found on the subscales ‘Reception in adult care’ (median 4.8, IQR 4.0–5.0), ‘Alliance paediatric and adult care’ (median 4.0, IQR 3.4–4.4), and ‘Transfer readiness’ (median 4.2, IQR 3.8–4.8). The lowest scores were found in the subscales ‘Preparation for transfer’ (median 3.3, IQR 2.7–4.0) and ‘Youth involvement’ (median 3.5, IQR 2.5–4.5). Higher scores on transition experiences were correlated with younger age and female sex, while lower scores were correlated with those of whom one or both biological parents died during childhood.</div></div><div><h3>Conclusion</h3><div>Transition experiences in our population were positive. Younger participants felt better prepared for the transfer, which indicates that transition is increasingly becoming a joint effort between young adults and healthcare professionals and that pathways accustomed to individual needs improve the transition experience for young adults with perinatal HIV.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100098"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143600566","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}
Benedicta C. Anikputa , Sharon D. Horner , Cecily L. Betz , Megan Thomas-Hebdon , Cara Young
{"title":"Associated factors that contribute to readiness for healthcare transition in a population of adolescents and young adults with special healthcare needs","authors":"Benedicta C. Anikputa , Sharon D. Horner , Cecily L. Betz , Megan Thomas-Hebdon , Cara Young","doi":"10.1016/j.hctj.2024.100081","DOIUrl":"10.1016/j.hctj.2024.100081","url":null,"abstract":"<div><h3>Background</h3><div>Children with special health care needs (SHCN) are a growing population in the United States, who because of advancements in medicine, are surviving into adulthood and are expected to transition from pediatric care to adult care. The purpose of this study was to identify and describe which ecological variables (internal locus of control, self-efficacy, self-advocacy, adolescent responsibility, parental responsibility, or perceived healthcare provider communication) are most influential in preparing adolescents and young adults (AYA) with SHCN to transition into the adult healthcare system.</div></div><div><h3>Methods</h3><div>A convenience sample of AYA with SHCN between the ages of 18–25, were recruited from specialty clinics, universities, local and national organizations. Flyers were placed at local establishments and businesses. The researcher also reached out to AYA with SHCN and those that worked with AYA with SHCN. Participants completed an online survey and multiple linear regression was used to answer the research question.</div></div><div><h3>Results</h3><div>Self-advocacy (p=.013), self-efficacy (p=.007), adolescent responsibility (p<.001), and communication with healthcare provider (p=.014) significantly predicted transition readiness. The resultant model was significant (F (1, 78) =6.39, P=.014, Adj R 2 =.540 and R 2 =.573).</div></div><div><h3>Conclusion</h3><div>This study addresses the gap in literature by examining factors from multiple domains that are theoretically seen as potentially influencing transition readiness. By determining which transition variables are the most important and necessary for transition readiness, then programs can be created to bolster them.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100081"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143141983","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}
Emma J. Clark MSc , Whitney Chan , Emily Gao , Ilana Radparvar , Rong Guo MS , Ana Gomez BA , Nashica Hamm BS , Dariush Kafashzadeh MD , Gery W. Ryan PhD , Mindy K. Ross MD, MAS, MBA
{"title":"Potential of patient portals to enhance adolescent asthma care engagement","authors":"Emma J. Clark MSc , Whitney Chan , Emily Gao , Ilana Radparvar , Rong Guo MS , Ana Gomez BA , Nashica Hamm BS , Dariush Kafashzadeh MD , Gery W. Ryan PhD , Mindy K. Ross MD, MAS, MBA","doi":"10.1016/j.hctj.2025.100117","DOIUrl":"10.1016/j.hctj.2025.100117","url":null,"abstract":"<div><h3>Importance</h3><div>Electronic health record-based patient portals hold promise for health care transition (HCT), particularly for chronic conditions like asthma.</div></div><div><h3>Objective</h3><div>To understand the potential of a portal-based asthma care management module in adolescent patients with asthma and evaluate its performance and usability.</div></div><div><h3>Methods</h3><div>We completed semi-structured interviews to determine adolescent perceptions of a portal-based asthma care module and its potential for HCT. We prototype tested a portal-based asthma management module with adolescent patients (12–17 years old) with asthma for their upcoming pediatric pulmonary clinic visits and measured its performance and usability. We reported descriptive statistics for survey data, and content analysis for interviews.</div></div><div><h3>Results</h3><div>Sixteen adolescents completed interviews. Most interviewees favored the idea of using a module before visits and believed it could help them with HCT. We identified five themes: adolescent familiarity with the patient portal, perceived benefits, perceived barriers, suggestions for usability, and perspectives on a portal module’s potential role in supporting their asthma and HCT readiness for asthma management. Eleven adolescents tested the module. The percentage of asthma data captured from the physician visit notes with the module was higher compared to notes without (93.1 % [95 % CI: 90.3, 95.3] vs. 74.6 % [95 % CI: 71.0,77.6], p < 0.005). The average System Usability Scale score of the module was 71 ± 9.6 (considered above average).</div></div><div><h3>Conclusions</h3><div>Our findings support the potential of portal-based based management modules to be accepted by adolescents with asthma and to engage adolescents more in their own care. We will continue to iterate the module for this population.</div></div>","PeriodicalId":100602,"journal":{"name":"Health Care Transitions","volume":"3 ","pages":"Article 100117"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144860723","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}
Daniella San Martin-Feeney , Sophie Samborn , Brooke Allemang , Megan Patton , Zoya Punjwani , Ken Pfister , Laurel Ryan , Gregory M.T. Guilcher , Lorraine Hamiwka , Scott Klarenbach , Eddy Lang , Kerry McBrien , Alberto Nettel-Aguirre , Danièle Pacaud , Jorge Pinzon , Shannon D. Scott , Lonnie Zwaigenbaum , Curtis Perrott , John Andersen , Gail Andrew , Gina Dimitropoulos
{"title":"Transition experiences of adolescents and young adults working with a patient navigator","authors":"Daniella San Martin-Feeney , Sophie Samborn , Brooke Allemang , Megan Patton , Zoya Punjwani , Ken Pfister , Laurel Ryan , Gregory M.T. Guilcher , Lorraine Hamiwka , Scott Klarenbach , Eddy Lang , Kerry McBrien , Alberto Nettel-Aguirre , Danièle Pacaud , Jorge Pinzon , Shannon D. Scott , Lonnie Zwaigenbaum , Curtis Perrott , John Andersen , Gail Andrew , 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}
Lisa Lestishock , Carrie Cuomo , Teresa Hickam , Tisa Johnson-Hooper , Michele Maddux , Evan Muzzall , Margaret McManus , Patience White
{"title":"Self-perceived importance and confidence of adolescents transitioning to adult care","authors":"Lisa Lestishock , Carrie Cuomo , Teresa Hickam , Tisa Johnson-Hooper , Michele Maddux , Evan Muzzall , Margaret McManus , 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}
Roula Markoulakis , Hinaya Cader , Karen Wong , Sugy Kodeeswaran , Tracey Addison , Cathy Walsh , Jocelyn Charles , Amy Cheung , Deepy Sur , David Willis , Anthony Levitt
{"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 , Hinaya Cader , Karen Wong , Sugy Kodeeswaran , Tracey Addison , Cathy Walsh , Jocelyn Charles , Amy Cheung , Deepy Sur , David Willis , 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}
Roula Markoulakis , Hinaya Cader , Karen Wong , Sugy Kodeeswaran , Tracey Addison , Cathy Walsh , Jocelyn Charles , Amy Cheung , Deepy Sur , David Willis , Anthony Levitt
{"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 , Hinaya Cader , Karen Wong , Sugy Kodeeswaran , Tracey Addison , Cathy Walsh , Jocelyn Charles , Amy Cheung , Deepy Sur , David Willis , 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}
Meghan K. Ford , Armanda Iuliano , Thomas D. Walters , Anthony R. Otley , David R. Mack , Kevan Jacobson , Jason D. Rights , Dean A. Tripp , Jennifer N. Stinson , Sara Ahola Kohut
{"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}