Health care transition models in spina bifida care: evidence-based lessons in support of neurosurgical practice.

OBJECTIVE: The purpose of this study was to conduct a literature review on transition programs from pediatric to adult care and the role of neurosurgery as individuals with spina bifida (SB) transition, and to provide a framework for neurosurgical providers to assist in the transition to adult-centered care. METHODS: A comprehensive literature review was conducted according to the PRISMA statement, with a search in Medline and Embase to identify US clinical programs reporting on their experiences establishing a transition program for adolescents and young adults with SB. Data were collected for authors, year, transition clinic location, model of care for transition clinic, ages served, and specialty clinical team. RESULTS: The literature search yielded 698 articles, 5 of which met the inclusion criteria. These 5 studies included 4 transition programs for which models of care and approach to transition, clinical services involved, establishment of goals, and age of initiation and transition were identified. All programs described setting transition goals, ranging from community services, to self-management, to health care navigation, to patient-driven goals, with 1 program reporting a quality-of-life measurement component to their model. CONCLUSIONS: Robust SB transition programs can be established by applying the expanded chronic care model, reviewing lessons learned by other programs, advocating at the institutional level, and seeking support via professional organizations. While the comprehensive role of neurosurgical providers in these programs is still being defined, a shared vision of enhancing the health and quality of life for individuals with SB and their families is needed by all subspecialists involved.

The importance of genetic counselling for turner syndrome transition.

The healthcare transition (HCT) is the process of planning, monitoring, and adjusting the clinical management from children's care to adult specialists. Although this practice is common for all children, it is especially crucial (and challenging) for those with chronic disorders and genetic conditions that also involve mental health issues, requiring a multidisciplinary approach. In this review, we aim to assess the current status of transition for girls and young women with Turner syndrome (TS) as a model as it is one of the most common sexual chromosomal aneuploidies. We first describe the syndrome highlighting some of the challenges regarding behavioural, neurodevelopmental, and mental health characteristics that must be addressed for a successful HCT. Finally, we emphasize the importance of genetic counselling within multidisciplinary groups for the successful implementation of HCT, especially for girls and women with TS, to facilitate their adaptation and adhesion to the transition process.

Optimising healthcare transition of adolescents and young adults to adult care: a perspective statement of the Italian Society of Obesity.

The transition to adult health care (HCT, Health Care Transition), is the purposeful, planned movement of patients from paediatric to adult services. For the adolescent living with obesity (ALwO), the HCT represents a crucial window for effective intervention that can help improve body weight, adiposopathy, and metabolic complications. Nevertheless, no transition guidelines, models, and tools have been developed for these patients. The present statement of the Italian Society of Obesity examines the critical transition of ALwO from paediatric to adult healthcare. It synthesises current knowledge and identifies gaps in HCT of ALwO. Drawing on successful practices and evidence-based interventions worldwide, the paper explores challenges, including disparities and barriers, while advocating for patient and family involvement. Additionally, it discusses barriers and perspectives within the Italian health care scenario. The need for specialised training for healthcare providers and the impact of transition on healthcare policies are also addressed. The conclusions underscore the significance of well-managed transitions. The SIO recognises that without proper support during this transition, ALwOs risk facing a gap in healthcare delivery, exacerbating their condition, and increasing the likelihood of complications. Addressing this gap requires concerted efforts to develop effective transition models, enhance healthcare provider awareness, and ensure equitable access to care for all individuals affected by obesity. The document concludes by outlining avenues for future research and improvement.

Barriers and facilitators to transition from pediatric to adult healthcare for immigrant youth with chronic health conditions.

PURPOSE: The objective of this study was to investigate the experience of first- and second- generation immigrant youth living with chronic health conditions in Canada, their parents or caregivers, and healthcare and service providers who care for immigrant youth, regarding the transition from pediatric to adult healthcare. DESIGN AND METHODS: We conducted semi-structured individual interviews and focus groups. Youth were 1st or 2nd generation immigrants, aged 16-25, with pediatric-onset chronic health conditions. Parents or caregivers had raised youth children as described. Providers delivered healthcare or other services to immigrant populations. Thematic analysis was conducted of all transcripts. RESULTS: Twenty youth, 14 parents/caregivers and five service providers participated. Most participants described healthcare transition as very difficult to navigate. Two major themes emerged across participant narratives: 1. Barriers to transition: lack of family experience in Canada, language, discrimination, financial strain, stigma, and long wait times. Some of these barriers are specific to newcomer families, but others are generalizable to the Canadian population. 2. Facilitators of transition: youth independence, youth acting as cultural bridges within their families, and cross-sector support between healthcare, education, social work and settlement services. CONCLUSIONS: Immigrant youth and their families face a broad range of barriers to healthcare transition. The collaborative nature of cross-sector support effectively addressed some of the barriers faced by newcomer families. PRACTICE IMPLICATIONS: Clinicians should provide immigrant youth and their families with accessible information about the health condition and how to navigate the adult healthcare system prior to transition, particularly when language barriers exist.

A Quality Improvement Initiative to Improve Health Care Transition Planning at Adolescent Well Visits.

OBJECTIVE: Health care transition (HCT) planning supports adolescents as they move from pediatric to adult health care and is recommended for all youth. HCT planning uptake remains low, with little known about HCT in the adolescent well child check (WCC) setting. We sought to increase rates of HCT planning at WCCs by adapting best practices for HCT from specialty and chronic care. METHODS: This quality improvement initiative at 12 to 17-year-old WCCs at four Internal Medicine-Pediatrics primary care clinics, was based on the first three of the "Six Core Elements" of HCT framework and integrated into the electronic health record. Two uptake measures were assessed via chart review after three plan-do-study-act (PDSA) cycles, with two provider surveys and an implementation science analysis further informing interpretation. RESULTS: By the final PDSA cycle, the percentage of 14 to 17-year-old WCCs at which HCT planning was discussed and a screening tool completed increased from 5% to 31%, and the percentage of 12 to 13-year-old WCCs at which the HCT policy was discussed increased from 6% to 47%. Provider survey results revealed endorsement of HCT goals, but time and technological barriers, which were further elucidated in the implementation science analysis. CONCLUSIONS: This quality improvement initiative increased rates of HCT planning during adolescent WCCs. While limited to three Core Elements and Internal Medicine-Pediatrics clinics, strengths include measures capturing all WCCs, contextualized by provider surveys and an implementation science framework. Lessons from this effort can inform future tailored HCT initiatives at adolescent WCCs.

Psychological separation, health locus of control, and transition readiness in adolescents and young adults with type I diabetes.

PURPOSE: The purpose of this study was to examine the effects of psychological separation and health locus of control on the health care transition readiness of adolescents and young adults (AYAs) with type 1 diabetes. METHODS: Data were collected between December 2020 and October 2021. One hundred twelve AYAs with type 1 diabetes treated at a tertiary hospital and under follow-up observation as well as AYAs with type 1 diabetes nationwide who were part of the type 1 diabetes internet community were enrolled. The Psychological Separation Inventory, the Multidimensional Health Locus of Control scale from C, and the Self-management and Transition to Adulthood with Therapeutics = Rx Questionnaire were used. RESULTS: Multiple regression analysis indicated that age (ß = 0.302, p = .001), hemoglobin A1c (HbA1c) (ß = -0.174, p = .040), conflictual separation (ß = 0.242, p = .005), functional separation (ß = 0.200, p = .045) and attitudinal separation (ß = -0.240 p = .015) were significantly associated with health management transition readiness; these predictors explained 27.6% of health care transition readiness (F = 8.062, p = .000). CONCLUSIONS: AYAs with type 1 diabetes can enhance readiness for health care transition by fostering psychological separation from parents, effectively managing blood glucose levels, and taking into account age-related factors during the preparation process. At this point, it is essential for healthcare professionals to guide parents in recognizing adolescents' psychological independence and facilitating their supportive role through the process of redefining their roles. PRACTICE IMPLICATIONS: Health care providers should promote psychological separation in AYAs. Additionally, taking into account the developmental characteristics of adolescence can facilitate a successful health care transition.

Transgender Youth Readiness for Health Care Transition: A Survey of Youth, Parents, and Providers.

Purpose: The purpose of this study was to identify health care transition (HCT) readiness and skills among transgender youth transitioning gender-affirming care from pediatric to adult providers. Methods: A convenience sample of youth, 14-21 years old, their parents, and health care providers recruited from a multidisciplinary transgender youth clinic in 2019 completed a modified version of the Got Transition readiness assessment with elements specific to gender-affirming care. Youth assessed their own readiness, parents assessed their child's readiness, and providers assessed their transgender patients' readiness overall. Results: Twenty-nine youth (mean age 17.0 years), 26 parents, and 5 health care providers participated. Ratings of the overall importance of preparing for HCT were similar across all participant groups, and there were few disagreements on the importance of individual skills included in the readiness assessment. Ratings of overall HCT readiness were similar for youth regardless of age, while parents of younger youth (<18 years old) reported lower readiness than did parents of older youth. Youth rated their own competence in several skills higher compared with parents or providers, including knowledge of hormone therapy side effects. All groups of participants reported that youth most frequently needed assistance with scheduling appointments and keeping records of health information. Conclusions: Survey of youth, parents, and providers suggests that youth and parents require additional support to navigate the HCT process, highlighting the importance of ongoing skills assessment and planning.

Young Adults with Type 1 Diabetes.

Young adults experience multiple developmental transitions across social, educational, vocational, residential, and financial life domains. These transitions are potential competing priorities to managing a chronic condition such as type 1 diabetes and can contribute to poor psychosocial and medical outcomes. In this narrative review, we describe population outcomes of young adult populations and the unique considerations associated with managing type 1 diabetes in young adulthood. We provide an overview of the current evidence-based strategies to improve care for young adults with type 1 diabetes and recommendations for future directions in the field.

Incorporating the Six Core Elements of Health Care Transition in Type 1 Diabetes Care for Emerging Adults.

A growing body of literature finds persistent problems in the provision of recommended health care transition services, as well as adverse outcomes associated with the lack of these services in emerging adults with type 1 diabetes. The Six Core Elements of Health Care Transition offers a structured approach to the phases of health care transition support for both pediatric and adult diabetes practices. This article reviews strategies to incorporate the Six Core Elements into ambulatory diabetes care to support successful health care transition for emerging adults with type 1 diabetes.

Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE (Responsibility. Independence. Self-care. Education) Data.

OBJECTIVE: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF). METHODS: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence. Self-care. Education) for patients aged 16-25 years who transitioned to adult care from 2013 through 2019. We modeled change in forced expiratory volume in 1 second % predicted and weight using linear regression fit with generalized estimating equations. Predictors included gap in care (time between last pediatric and first adult outpatient visit), transition program engagement, and sociodemographic and medical factors. RESULTS: Among 12 420 adolescents and young adults (AYAs), 3876 transitioned to adult care with a median gap in care of 7.6 months. Patients from CF centers with greater rates of CF RISE engagement had improved lung function and weight at their first adult outpatient visit. Coverage on a parent's insurance plan and absence of CF complications predicted increased lung function. History of a nonlung transplant and sinus disease predicted increased weight. Comorbid diabetes mellitus and gaps in care >3 months predicted decreased lung function with longer gaps in care associated with greater decrease. A gap in care of 6-9 months predicted decreased weight. Control variables including baseline forced expiratory volume in 1 second and weight, and exacerbation status were also statistically significant. CONCLUSIONS: Findings suggest 2 promising targets to improve transition of AYAs with CF: increasing AYA engagement in CF RISE and reducing gaps in care during the transition period.

Value-Based Payment to Support Health Care Transition for Young Adults with Intellectual and Developmental Disabilities: A Feasibility Study.

INTRODUCTION: Only 20% of youth with intellectual and developmental disability (ID/DD) receive health care transition (HCT) preparation from their health care providers (HCPs). To address HCT system gaps, the first-of-its-kind HCT value-based payment (VBP) pilot was conducted for young adults (YA) with ID/DD. METHODS: This feasibility study examined the acceptability, implementation, and potential for expansion of the pilot, which was conducted within a specialty Medicaid managed care organization (HSCSN) in Washington, DC. With local pediatric and adult HCPs, the HCT intervention included a final pediatric visit, medical summary, joint HCT visit, and initial adult visit. The VBP was a mix of fee-for-service and pay-for-performance incentives. Feasibility was assessed via YA feedback surveys and interviews with HSCSN, participating HCPs, and selected state Medicaid officials. RESULTS: Regarding acceptability, HSCSN and HCPs found the HCT intervention represented a more organized approach and addressed an unmet need. YA with ID/DD and caregivers reported high satisfaction. Regarding implementation, nine YA with ID/DD participated. Benefits were reported in patient engagement, exchange of health information, and care management and financial support. Challenges included care management support needs, previous patient gaps in care, and scheduling difficulties. Regarding expansion, HSCSN and HCPs agreed that having streamlined care management support, medical summary preparation, and payment for HCT services are critical. DISCUSSION: This study examined the benefits and challenges of a HCT VBP approach and considerations for future expansion, including payer/HCP collaboration, HCT care management support, and updated system technology and interoperability.

Diabetes-Focused Health Care Utilization Among Adolescents and Young Adults With Type 1 Diabetes.

OBJECTIVE: To describe the current rates of health services use with various types of providers among adolescents and young adults (AYA) with type 1 diabetes (T1D) and evaluate which patient factors are associated with rates of service use from different provider types. METHODS: Using 2012-16 claims data from a national commercial insurer, we identified 18,927 person-years of AYA with T1D aged 13 to 26 years and evaluated the frequency at which: 1) AYA skipped diabetes care for a year despite being insured; 2) received care from pediatric or non-pediatric generalists or endocrinologists if care was sought; and 3) received annual hemoglobin A1c (HbA1c) testing as recommended for AYA. We used descriptive statistics and multivariable regression to examine patient, insurance, and physician characteristics associated with utilization and quality outcomes. RESULTS: Between ages 13 and 26, the percentage of AYA with: any diabetes-focused visits declined from 95.3% to 90.3%; the mean annual number of diabetes-focused visits, if any, decreased from 3.5 to 3.0; receipt of ≥2 HbA1c tests annually decreased from 82.3% to 60.6%. Endocrinologists were the majority providers of diabetes care across ages, yet the relative proportion of AYA whose diabetes care was endocrinologist-dominated decreased from 67.3% to 52.7% while diabetes care dominated by primary care providers increased from 19.9% to 38.2%. The strongest predictors of diabetes care utilization were younger age and use of diabetes technology (pumps and continuous glucose monitors). CONCLUSIONS: Several provider types are involved in the care of AYA with T1D, though predominate provider type and care quality changes substantially across age in a commercially-insured population.

The Health Care Transition Needs of Adolescents and Emerging Adults with Chronic Pain: A Narrative Review.

The aim of this narrative review was to provide an overview of what is known about the health care transition process in pediatric chronic pain, barriers to successful transition of care, and the roles that pediatric psychologists and other health care providers can play in the transition process. Searches were run in in Ovid, PsycINFO, Academic Search Complete, and PubMed. Eight relevant articles were identified. There are no published protocols, guidelines, or assessment measures specific to the health care transition in pediatric chronic pain. Patients report many barriers to the transition process, including difficulty attaining reliable medical information, establishing care with new providers, financial concerns, and adapting to the increased personal responsibility for their medical care. Additional research is needed to develop and test protocols to facilitate transition of care. Protocols should emphasize structured, face-to-face interactions and include high levels of coordination between pediatric and adult care teams.

Developing and Psychometric Testing a Health Care Transition Service Measure in the National Survey of Children's Health.

OBJECTIVE: Access to health care transition (HCT) services has been included in national surveys for 20 years. While dozens of studies have assessed HCT, no study has examined the model fit of the HCT questions or psychometric properties of the measure. We utilized National Survey of Children's Health (NSCH) data to develop and test a comprehensive HCT measure. METHODS: We utilized NSCH data (2016-19) to examine the model fit of 9 HCT questions. The new measure's psychometric properties were assessed by comparing it to theoretically similar and divergent variables including receiving care coordination/help, shared-decision making, satisfaction with communication, preventative dental care, and volunteer experience. RESULTS: An exploratory factor analysis and item culling yielded 8 items addressing 3 subscales. A confirmatory factor analysis on separate data confirmed the identified subscales. A dichotomous and continuous scale was created with subscales including Guidance Toward Independence, Adequate Clinic Visit, and Continuity of Care Discussions. Model fit was excellent with an Eigenvalue of 1.08% and 89% variance explained in exploratory factor analysis and a Goodness of Fit index of 0.97 in confirmatory factor analysis. Examination of initial reliability and content and criterion validity indicated high reliability and validity for the scale and subscales. CONCLUSIONS: This was the first study to examine the psychometric properties of the HCT measure in the NSCH. The HCT measure identified in this study assesses providers' use of care plans, promotion of independence, clinic visit quality, and transfer assistance. This measure will be a useful tool in clinics, intervention development, and research for adolescents with and without special health care needs.retain-->.

Quality of Web-Based Sickle Cell Disease Resources for Health Care Transition: Website Content Analysis.

Background: Adolescents and young adults with sickle cell disease (SCD) transitioning from pediatric to adult health care face a high-risk period associated with increased use of acute health care services and mortality. Although 59% of American citizens report using the internet for health care information, the quality of web-based, patient-facing resources regarding transition in SCD care has not been evaluated. Objective: This study aimed to evaluate the quality and readability of web-based health information on SCD, especially as it pertains to the transition to adulthood for inidividuals with SCD. The study also compared the readability and content scores of websites identified in 2018 to those from 2021 to assess any change in quality over time. Methods: Keywords representing phrases adolescents may use while searching for information on the internet regarding transition in SCD care, including "hydroxyurea" and "SCD transition," were identified. A web-based search using the keywords was conducted in July 2021 using Google, Yahoo, and Bing. The top 20 links from each search were collected. Duplicate websites, academic journals, and websites not related to SCD health care transition were excluded. Websites were categorized based on the source: health department, hospital or private clinician, professional society, and other websites. Websites were assessed using Health On the Net Foundation code of conduct (HONcode), Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FGL), Ensuring Quality Information for Patients (EQIP), and a novel SCD content checklist (SCDCC). EQIP and SCDCC scores range from 0- to 100. Each website was reviewed by 2 research assistants and assessed for interrater reliability. Descriptive statistics were calculated. Results: Of the 900 websites collected, 67 (7.4%) met the inclusion criteria: 13 health department, 7 hospital or private clinician, 33 professional society, and 14 other websites. A total of 15 (22%) out of 67 websites had HONcode certification. Websites with HONcode certification had higher FRE and EQIP scores and lower FGL scores than those without HONcode certification, reflecting greater readability. Websites without HONcode certification had higher SCDCC scores, reflecting greater clinical content. Only 7 (10%) websites met the National Institutes of Health recommendation of a seventh-grade or lower reading level. Based on EQIP scores, 6 (9%) websites were of high quality. The mean SCDCC score was 20.60 (SD 22.14) out of 100. The interrater reliability for EQIP and SCDCC ratings was good (intraclass correlation: 0.718 and 0.897, respectively). No source of website scored significantly higher mean EQIP, FRE, FGL, or SCDCC scores than the others (all P<.05). Conclusions: Although seeking health care information on the web is very common, the overall quality of information about transition in SCD care on the internet is poor. Changes to current web-based health care information regarding SCD care transitions would benefit transitioning youth by providing expectations, knowledge, skills, and tools to increase self-efficacy.

Transition of Kidney Care at 18: Challenges and Practical Solutions for India.

Health-care transition (HCT) from pediatric-centered to adult-oriented health-care setting is more than a simple transfer of care. It is a carefully planned movement specially tailored for the needs of adolescents and young adults (AYAs). Similar to other chronic diseases, the need for HCT for AYAs with kidney disease has been well established by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA) consensus statements since 2011. However, successful HCT in India and other low- and middle-income countries (LMICs) has been limited. Undertaking the HCT program in India requires involvement of many stakeholders, that is, AYAs, parents/caregivers, health-care providers, and the health-care system. In this article, we discuss the need for HCT, the challenges faced during the transition, and the recommended models for HCT in kidney care. We focus on the unique challenges faced in India and conclude with practical suggestions to implement HCT in our setting.

Outcomes of a Structured Ambulatory Care Health Care Transition Approach in a Large Children's Hospital.

PURPOSE: Without a structured health-care transition (HCT) process, youths with chronic conditions face increased morbidity, care gaps, and dissatisfaction. This article documents the process and outcomes of implementing a standardized approach in a large children's hospital. METHODS: Children's Mercy Kansas City adopted Got Transition's Six Core Elements of Health Care Transition and established a system-wide implementation plan, between 2015 and 2019, involving leadership buy-in, consumer engagement, infrastructure improvements, and quality improvement efforts. Outcomes measured included the number of youths aged 12-21 years receiving transition readiness assessments and participating in goal setting, receiving counseling, and receiving a transfer order, if appropriate. Also, Division-specific process outcome surveys were conducted annually using Got Transition's Current Assessment of HCT Activities. RESULTS: A total of 8,099 unique patients received a structured HCT intervention using the Six Core Element approach over the 5-year period. From 2015 to 2019 the average annual growth was: 207% for completion of transition readiness and goals assessments, 243% for charting of HCT discussions, and 105% for transfer orders. In 2015, 3/20 (15%) divisions were implementing this HCT intervention; in 2019, 17/20 (85%) divisions were implementing it, representing a 467% growth. Division participation in measuring HCT implementation also increased by 89% from 9/20 in 2016 to 17/20 in 2019. The average Current Assessment of HCT Activities scores increased by 35% from 14.55/32 to 19.67/32 during that time. DISCUSSION: This hospital-wide program demonstrates that a standardized HCT process can be successfully implemented in a diverse group of outpatient pediatric primary and subspecialty care settings.

A Mixed Methods Study on Healthcare Transition From Pediatric to Adult Care in Transgender and Gender-Diverse Adolescents and Young Adults.

PURPOSE: This study assessed healthcare transition (HCT) readiness and barriers to HCT among transgender and gender diverse (TGD) adolescent and young adults (AYA) using mixed-method techniques. METHODS: Fifty TGD AYA participants were surveyed using a validated transition readiness assessment questionnaire and open-ended questions examining challenges, influential factors, and health implications of HCT. Open-ended responses underwent qualitative analysis to identify consistent themes and response frequency. RESULTS: Participants felt most prepared for communicating with providers and completing medical forms and least prepared for navigating insurance/financial systems. Half of the participants anticipated worsening mental health during HCT, with additional concerns related to transfer logistics and transphobia/discrimination. Participants identified intrinsic skills and external factors (such as social relationships) that would contribute to a more successful HCT. DISCUSSION: TGD AYA face unique challenges in navigating the transition to adult health care, particularly related to concerns of discrimination and negative impacts on mental health, but these challenges may be mitigated by certain intrinsic resilience factors as well as targeted support from personal networks and pediatric providers.

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges.

PURPOSE: The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care. CONCLUSIONS: Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care. PRACTICE IMPLICATIONS: Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.