Health Care Transition Services Research Articles

Landscape of healthcare transition services in Canada: a multi-method environmental scan

BackgroundPoorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the “Transition Hub”, established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services.MethodsOur project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers’ perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method.ResultsFifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change.ConclusionsWhile national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada.

Promoting successful health care transitions for young people aging out of foster care.

Improving adolescent to adult health care transitions (HCTs) would benefit all young people in the United States but has particular importance for the more than 120,000 adolescents and young adults (AYA) placed in foster care. Leveraging clinical guidelines and evidence-based interventions, HCT efforts inclusive of and specific to AYA placed in foster care can be strengthened through greater collaboration between child welfare, health care, and other AYA-serving systems. This Health Policy Brief advances the importance of structured Health Care Transition services for adolescents and young adults placed in foster care. Additionally, it highlights opportunities for health care providers, youth-serving systems, and health policy stakeholders to collaborate with child-welfare involved young people in order to prioritize evidence-based health care transition interventions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Comorbidities, healthcare use, and contact with healthcare transition services in older veterans after incarceration.

The Health Care for Reentry Veterans (HCRV) program was established to support community reintegration for veterans after incarceration. Yet, it is unclear how those with and without HCRV contact differ. We sought to evaluate differences in medical and psychiatric conditions and healthcare utilization among mid-to late-life reentry veterans who did and did not receive HCRV outreach. Study participants were veterans aged ≥50 years who qualified for Medicare fee-for-service, had experienced incarceration for ≥1 year, and were released from incarceration between October 1, 2006, and September 30, 2018 (N = 9733). Using VA and Medicare claims data, we compared prevalence of medical and psychiatric diagnoses, and use of emergency, inpatient, and outpatient medical and mental health services up to 12 months after release between those with and without HCRV contact. Veterans with HCRV contact (35.5%) had significantly higher rates of psychiatric conditions and medical conditions related to substance use (e.g., liver disease) compared to veterans without HCRV contact. Average time between release and first healthcare service use was significantly lower for HCRV veterans (36.5 ± SD 59.5 days) versus non-HCRV veterans (58.9 ± SD 77.5 days) and HCRV veterans were more likely to utilize the emergency department, inpatient and outpatient mental health services, and inpatient medical services. HCRV reaches older reentry veterans with a large burden of mental health and substance use disorders. However, levels of multimorbidity were high among all older reentry veterans, pointing to a need to develop specialized geriatric models of care for this reentry population.

Health care transition experiences of young adults with medical complexity

BackgroundTransition from pediatric to adult healthcare and services is an important event in the life course of all youth, including youth living with medical complexity. Data from the National Survey of Children’s Health indicates less than 20 % of youth receive health care transition services. The goal of our study was understanding the support, tools and resources that facilitate successful health care transition of young adults living with medical complexity. MethodsYoung adults living with medical complexity and their parents shared their lived experience of ‘what worked’ and ‘what is needed’ for successful health care transition during focus group sessions. Content analysis of transcripts used an iterative and deductive approach guided by a priori themes. FindingsThe voices of ten young adults and fourteen parents were shared during three virtual focus group sessions. They described health care transition (HCT) as an individualized process with success relying on consistent, clearly-defined and systemwide guidelines and resources. Moving from pediatric/family-focused care to adult/patient-focused care requires increased self-management and young adults often felt under-prepared for this role. Support from formal transition coordinators would improve communication between the multiple health, county/state agency and education systems involved during the transition period. ConclusionsUnderstanding the support, tools, and resources specifically needed by young adults with medical complexity for successful pediatric to adult health care transition is a critical first step in addressing the documented lack of transition services for this vulnerable population. This includes formal peer support programs for young adults with medical complexity and their parents.

Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative

Background and significanceCongenital adrenal hyperplasia (CAH) is a genetic condition impairing adrenal steroid production, requiring lifelong steroid replacement, leading to decreased quality of life and a shortened lifespan. Preparing and supporting adolescents with CAH to develop health-related knowledge, skills, and decision-making during the pediatric-to-adult healthcare transition (HCT) is a priority. Many adolescents with CAH do not receive adequate HCT and do not attend follow-up care after transfer to an adult setting. The Comprehensive Adolescent Healthcare Transition (CAH-T) program was developed using CAH care guidelines and the Got Transition Six Core Elements of Healthcare Transition approach. PurposeThis quality improvement (QI) initiative aimed to evaluate clinicians’ utilization and acceptance of the CAH-T program for addressing the HCT needs of adolescents with CAH in a southeastern United States pediatric endocrine clinic. InterventionBaseline demographics, the Health Care Transition Feedback Survey for Clinicians, and the Current Assessment of Healthcare Transition Activities were measured using surveys adopted from Got Transition. Clinicians were educated on the CAH-T program and patient education materials. Following implementation, clinicians documented all CAH-T program-recommended interventions provided in the clinic. Surveys were reassessed using repeated measures. EvaluationTwenty-nine clinicians participated. Eight separate patients received 53 total CAH-T program-recommended interventions during the three-month observation period. Paired assessment of the Current Assessment of Healthcare Transition Activities scores increased from 15.29 ± 8.32 to 24.00 ± 6.11 (p = 0.018; r = 0.63). The Health Care Transition Feedback Survey for Clinicians mean scores increased from 2.75 ± 0.26 to 3.30 ± 0.43 (p = 0.018; r = 0.59). These measures indicate increased utilization of HCT services and acceptance of HCT value. Clinicians suggested that time limitations, English-only transition education materials, and lack of electronic medical record integration were significant barriers to HCT support. Implications for practiceA structured HCT program ensures clinicians provide adolescents with CAH support and guideline-based care. The CAH-T program offers an example of developing and implementing an HCT program for adolescents with CAH. Integration in the electronic medical record will ultimately increase program sustainability.

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

ObjectiveAccess 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. MethodsWe 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. ResultsAn 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. ConclusionsThis 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-->

Transition practices for survivors of childhood cancer: a report from the Children's Oncology Group.

Pediatric healthcare systems must support childhood cancer survivors to optimize their transition to adult care. This study aimed to assess the state of healthcare transition services provided by Children's Oncology Group (COG) institutions. A 190-question online survey was distributed to 209 COG institutions to assess survivor services, including transition practices, barriers, and implementation of services aligned with the six core elements of Health Care Transition 2.0 from the US Center for Health Care Transition Improvement. Representatives from 137 COG sites reported on institutional transition practices. Two-thirds (66.4%) of site discharge survivors to another institution for cancer-related follow-up care in adulthood. Transfer to primary care (33.6%) was a commonly reported model of care for young adult-aged survivors. Site transfer at ≤ 18 years (8.0%), ≤ 21 years (13.1%), ≤ 25 years (7.3%), ≥ 26 years (12.4%), or when survivors are "ready" (25.5%). Few institutions reported offering services aligned with the structured transition process from the six core elements (Median = 1, Mean = 1.56, SD = 1.54, range: 0-5). The most prevalent barriers to transitioning survivors to adult care were perceived lack of late-effects knowledge among clinicians (39.6%) and perceived lack of survivor desire to transfer care (31.9%). Most COG institutions transfer adult-aged survivors of childhood cancer elsewhere for survivor care, yet few programs report delivering recognized standards for quality healthcare transition programming to support survivors. Development of best practices for survivor transition is needed to help promote increased early detection and treatment of late effects among adult survivors of childhood cancer.

Health care transition planning: A potpourri of perspectives from nurses.

Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development. This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved. A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents). These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.

Variations in Healthcare Transition Preparation Among Youth With Chronic Conditions

Youth with special healthcare needs have low rates of healthcare transition services, which can affect lifelong functioning and quality of life. This study examines the variations in receipt of healthcare transition services among youth with special healthcare needs. Data from the 2016-2018 National Survey of Children's Health (N=102,341) were analyzed in 2021. Receipt of healthcare transition services by youth with select health conditions was compared with youth with other special healthcare needs. Bivariate and multivariable analyses assessed the associations between the receipt of healthcare transition services, sociodemographic characteristics, and health conditions. Among youth with special healthcare needs, the prevalence of receiving healthcare transition services was lowest among youth with speech or other language disorders (8.5%), intellectual disabilities (9.4%), and autism spectrum disorder (11.1%). Low prevalence of receiving healthcare transition services was also observed for youth with developmental delays (12.6%), learning disabilities (14.2%), and behavior or conduct problems (15.5%). Youth with developmental delays (AOR=0.70, 95% CI=0.52, 0.95), intellectual disabilities (AOR=0.45, 95% CI=0.26, 0.78), learning disabilities (AOR=0.77, 95% CI=0.60, 0.99), autism spectrum disorder (AOR=0.60, 95% CI=0.41, 0.86), and speech or other language disorders (AOR=0.48, 95% CI=0.32, 0.72) had lower odds of receiving healthcare transition services than youth with other special healthcare needs. Findings suggest that the receipt of healthcare transition services varies substantially by the type of chronic health condition and highlight the need for increased healthcare transition services for youth with special healthcare needs, especially for youth with neurodevelopmental disabilities and speech or other language disorders.

Increasing Pediatric to Adult Healthcare Transition Services Through Clinical Decision Supports

PurposeDespite American Academy of Pediatrics recommendations that adolescents receive healthcare transition (HCT) services starting at age 12, few do. Electronic health record-based clinical decision support (CDS) tools are effective at promoting healthcare provider adherence to clinical guidelines. This study's purpose was to increase provider HCT services engagement through implementation of a transition-specific CDS and participation in a transition-focused Learning Collaborative (LC). Design and methodsThree pediatric primary care sites of an urban, academic medical center implemented a transition CDS tool for ≥14-year-olds. Previously, one site had a version for ≥16-year-olds. Two sites participated in a LC with Plan-Do-Study-Act cycles targeting HCT services engagement, measured by CDS use and practice-level guideline implementation. ResultsFrom July 2018 through June 2019, providers at LC-participating sites engaged in HCT services at 8.0% (n = 480) and 5.3% (n = 145) of eligible patient visits compared to the control's 3.1% (n = 69). Engagement was highest for ≥18-year-olds at the LC-participating sites, 26.0% (n = 263) and 12.0% (n = 80), compared to the control's 7.2% (n = 31). After expanding from ≥16 to ≥14-year-olds, engagement decreased by 9.5% at ≥16-year-old visits. LC-participating sites reported increased HCT guideline adherence. ConclusionsImplementation of a transition-specific CDS with LC participation increased provider HCT services engagement and practice-level guideline implementation. Expansion to younger adolescents contributed to decreased engagement for older patients. Future research should assess opportunities to improve uptake and patient outcomes of transition CDS engagement. Practice implicationsQuality improvement activities and transition clinical decision supports can improve provider engagement in recommended transition services for adolescents and young adults.

Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood.

Most individuals with autism spectrum disorder (ASD)—a complex, life-long developmental disorder—do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access. A robust understanding of barriers to accessing healthcare across the lifespan of autistic individuals is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes. Stakeholders must strengthen healthcare service provision by coming together to: better understand healthcare needs of underserved populations; strengthen medical training on care of autistic individuals; increase public awareness of ASD; promote research into/uptake of tools for ASD screening, diagnosis, and treatment; understand specific healthcare needs of autistic individuals in lower resource countries; and conduct longitudinal studies to understand the lifetime health, social, and economic impacts of ASD and enable the evaluation of novel approaches to increasing healthcare access.Impact Despite the growing body of evidence, our understanding of barriers to healthcare encountered by individuals with ASD remains limited, particularly beyond childhood and in lower resource countries.We describe current and emerging barriers to healthcare access encountered by individuals with ASD across the lifespan.We recommend that stakeholders develop evidence-informed policies, programs, and technologies that address barriers to healthcare access for individuals with ASD and consider broad, equitable implementation to maximize impact.

Improving Transition Readiness in Young Adults With Sickle Cell Disease

Transition of young adults with sickle cell disease is essential. This project examined the effectiveness of an educational intervention at a pediatric hematology practice to improve transition readiness in young adults with sickle cell disease. Interventions used were 2 Stepping Up videos and 5 questions from “Incorporating Health Care Transition Services Into Preventive Care for Adolescents and Young Adult.” Data was collected and results were analyzed preintervention, immediately postintervention, and at return office visit. Non–high school graduates showed greater improvement in total and subscale mean scores after the intervention at the return office visit.

Development and Initial Testing of a Health-Related Independence Measure for Autistic Young Adults as Reported by Caregivers.

Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA. This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included: (1) construct and question topic development through qualitative data collection with AYA and caregivers; (2) question development with clinicians and caregivers; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers. Measure constructs were developed based on qualitative findings from AYA (n = 27) and caregivers (n = 39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n = 5) and clinicians (n = 25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n = 15) and pretests (n = 21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians. Why was this study done?: Health care transition services help youth keep their health insurance, transition to an adult doctor smoothly, and promote independence. To date, there is no health care transition intervention for autistic young adults. Few studies have examined how to prepare autistic young adults to manage their health and self-care needs and the transition to an adult model of care. We wanted to fill in these gaps by creating a measure of health care transition readiness for autistic young adults.What was the purpose of this study?: The purpose of the study was to develop the Health-Related Independence measure based on autistic young adult and caregiver input. We define Health-Related Independence as a young adult's ability to manage their health, healthcare, and safety needs. We also wanted to examine the measure to make sure it was easy to read, made sense, and was easy to answer.What did the researchers do?: We used a mixed-methods approach to develop and test the Health-Related Independence measure. There were three parts to the study: (1) we conducted individual interviews with autistic young adults and focus groups with caregivers to understand what topics should be included in the measure, (2) clinicians and caregivers then used those topics to create specific survey questions, (3) we conducted interviews and online pretest of the measure with caregivers.What were the results of the study?: The autistic young adults and caregivers identified twelve topics/themes to include in the Health-Related Independence Measure. Caregiver feedback helped make the measure shorter and easier to understand and complete. The final version of the caregiver-reported HRI measure included 58 questions.What do these findings add to what was already known?: We learned that young adults and caregivers have a broad understanding of health-related independence such as safety and sexuality/relationship knowledge. There weren't any measures to capture these ideas. This study created an important new measure that can be used in healthcare clinics, schools, and at home.What are potential weaknesses in the study?: This study aimed to work with autistic young adults to develop the Health-Related Independence measure, but due to funding and study limitations, we only included young adults in the 1st phase of the study. Caregivers were used as proxy reporters in phases 2 and 3. Not including autistic young adults in phases 2 and 3 was a weakness of the study. Future research should aim to fully incorporate young adults into the research process. Their views should inform the development of the qualitative interview guides and all portions of the study.How will these findings help autistic adults now or in the future?: The Health-Related Independence measure can help caregivers and health care providers identify areas in which the autistic young adults are successful and areas of needed improvement to assist in the successful transition to adult care and adult life. The authors are currently working on a study proposal to validate the Health-Related Independence measure as a self-assessment tool for young adults to take themselves.

Health Care Transition Services and Adaptive and Social-Emotional Functioning of Youth with Autism Spectrum Disorder.

To promote health care transition services (HCTS) among youth with autism spectrum disorder (ASD), it is important to understand their access to HCTS and the association with functioning. We conducted weighted descriptive statistics and regressions. Findings suggested that HCTS were inconsistently provided to youth with ASD. Access to two or more HCTS was associated with positive social-emotional functioning. Helping youth with ASD understand health care changes and working with them to gain skills in managing health needs were found to be significant determinants of positive social-emotional functioning. The present study sheds light on HCTS that are essential for youth with ASD and highlights the necessity of health care system changes to promote service access and optimal functioning for youth with ASD.

A Multidisciplinary Transition Consult Service: Patient Referral Characteristics

PurposeChildren's hospitals must provide developmentally appropriate care to increasing numbers of young adults with complex healthcare needs as they transition to adult-oriented care. This article describes the patients, service, and short-term outcomes of an interprofessional healthcare transition (HCT) consult team comprised of nurses, social workers, a community health worker, and physicians. Design and methodsThe Adult Consult Team's tiered population framework stratifies patients by medical complexity. The team coordinates HCT services for patients with the highest complexity. Patients at least 18 years old are eligible if they have at least two specialists or an intellectual or developmental disability (IDD). Through a comprehensive medical and psychosocial assessment, the team prepares patients/families for adult-oriented healthcare. ResultsThe Adult Consult Team received 197 referrals from July 2017 to June 2018. Patients had at least two specialists (73%), IDD (71%), technology dependence (e.g., gastrostomy tube, 37%) and Medicaid insurance (57%). The team assisted patients seen in its outpatient clinic with navigating mental health services (39%), insurance issues (13%), IDD services (15%), and the guardianship process (37%) and creating comprehensive care plans. ConclusionsThe Adult Consult Team transferred 30 patients with medical complexity to adult primary and specialty care, significantly improving pediatric inpatient and outpatient capacity for pediatric-aged patients. A broad range of young adult medical, psychosocial, legal, educational, and vocational needs were addressed. Practice implicationsAn interprofessional team approach can help large pediatric healthcare systems address the multi-faceted needs of patients who are medically and psychosocially complex as they enter adulthood.

Disparities Based on Race, Ethnicity, and Socioeconomic Status Over the Transition to Adulthood Among Adolescents and Young Adults on the Autism Spectrum: a Systematic Review.

Few studies have examined disparities in autism services and functional outcomes over the life course. Transition to adulthood is an especially important developmental period, as it sets up trajectories of adult functioning. This systematic review summarizes patterns of service use and transition outcomes according to race, ethnicity, and socioeconomic characteristics over the transition to adulthood. Forty studies were included. Low-income and racial/ethnic minority youth on the autism spectrum were less likely to participate in transition planning meetings, enroll in postsecondary education, find competitive employment after high school, live independently, participate in social activities, and receive health care transition services than their White and higher income peers on the autism spectrum. Racial/ethnic minority and low-income youth on the autism spectrum were more likely to be disconnected from educational, occupational, and social activities upon entering adulthood. Future research should explore the mechanisms underlying these disparities as a first step to addressing them.

Improving health care transition and longitudinal care for adolescents and young adults with hydrocephalus: report from the Hydrocephalus Association Transition Summit.

The health care needs of children with hydrocephalus continue beyond childhood and adolescence; however, pediatric hospitals and pediatric neurosurgeons are often unable to provide them care after they become adults. Each year in the US, an estimated 5000-6000 adolescents and young adults (collectively, youth) with hydrocephalus must move to the adult health care system, a process known as health care transition (HCT), for which many are not prepared. Many discover that they cannot find neurosurgeons to care for them. A significant gap in health care services exists for young adults with hydrocephalus. To address these issues, the Hydrocephalus Association convened a Transition Summit in Seattle, Washington, February 17-18, 2017.The Hydrocephalus Association surveyed youth and families in focus groups to identify common concerns with HCT that were used to identify topics for the summit. Seven plenary sessions consisted of formal presentations. Four breakout groups identified key priorities and recommended actions regarding HCT models and practices, to prepare and engage patients, educate health care professionals, and address payment issues. The breakout group results were discussed by all participants to generate consensus recommendations.Barriers to effective HCT included difficulty finding adult neurosurgeons to accept young adults with hydrocephalus into their practices; unfamiliarity of neurologists, primary care providers, and other health care professionals with the principles of care for patients with hydrocephalus; insufficient infrastructure and processes to provide effective HCT for youth, and longitudinal care for adults with hydrocephalus; and inadequate compensation for health care services.Best practices were identified, including the National Center for Health Care Transition Improvement's "Six Core Elements of Health Care Transition 2.0"; development of hydrocephalus-specific transition programs or incorporation of hydrocephalus into existing general HCT programs; and development of specialty centers for longitudinal care of adults with hydrocephalus.The lack of formal HCT and longitudinal care for young adults with hydrocephalus is a significant health care services problem in the US and Canada that professional societies in neurosurgery and neurology must address. Consensus recommendations of the Hydrocephalus Association Transition Summit address 1) actions by hospitals, health systems, and practices to meet local community needs to improve processes and infrastructure for HCT services and longitudinal care; and 2) actions by professional societies in adult and pediatric neurosurgery and neurology to meet national needs to improve processes and infrastructure for HCT services; to improve training in medical and surgical management of hydrocephalus and in HCT and longitudinal care; and to demonstrate the outcomes and effectiveness of HCT and longitudinal care by promoting research funding.

The Medical Home and Health Care Transition for Youth With Autism.

Our objective in this study was to describe the association between the receipt of health care transition services (HCTS) and having a medical home in youth with autism spectrum disorder (ASD). Youth with ASD receive HCTS less often than other youth with special health care needs but are in particular need of continuous, comprehensive health care. We used the National Survey of Children with Special Health Care Needs to describe the receipt of HCTS in youth with ASD and its association with presence of a medical home. Descriptive statistics are presented, and logistic regression is used to assess the association between medical home and HCTS. Twenty-one percent of youth with ASD met the criteria for receiving HCTS. Youth with ASD and a medical home were almost 3 times as likely to receive HCTS as youth without a medical home, and youth who received family-centered care and have adequate care coordination within the medical home were more than twice as likely to receive HCTS as those who did not. Youth with ASD are not receiving HCTS at the same rate as their peers. Increasing provider awareness of autism, the components of a medical home, and of the importance of HCTS could greatly help increase the percentage of youth who receive effective HCTS.

Disparities in Access to Healthcare Transition Services for Adolescents with Down Syndrome

To compare healthcare transition planning in adolescents with Down syndrome with adolescents with other special healthcare needs. Data were drawn from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample with 17 114 adolescents aged 12-17 years. Parents were asked whether providers and the study child had discussed shifting to an adult provider, changing healthcare needs, maintaining health insurance coverage, and taking responsibility for self-care. The transition core outcome was a composite measure based on the results of these 4 questions. Multivariable logistic regression determined the association between Down syndrome and the transition core outcome as well as each of the 4 individual component measures. Although 40% of adolescents with other special healthcare needs met the transition core outcome, 11.0% of adolescents with Down syndrome met this outcome. Adolescents with Down syndrome were less likely to be encouraged to take responsibility for their health (32.2% vs 78.4%). After adjustment for demographic, socioeconomic, and health-related factors, adolescents with Down syndrome had 4 times the odds of not meeting the transition core outcome. For the component measures, Down syndrome adolescents had 4 times the odds of not being encouraged to take responsibility for self-care. Medical home access increased the odds of transition preparation. Adolescents with Down syndrome experience disparities in access to transition services. Provider goals for adolescents with Down syndrome should encourage as much independence as possible in their personal care and social lives.

Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program

Global efforts are underway to develop, implement and test health care transition (HCT) models of care. Most studies have focused on the transfer of care models. In contrast, the nurse-led interdisciplinary HCT model, Movin' On Up, provides comprehensive HCT services beginning in early adolescence. A retrospective analysis was conducted of data extracted from HCT records of 146 adolescents and emerging adults with spina bifida (with a mean age of 13.91 years) who were provided services in the Movin' On Up HCT program. Data were categorized based on the Health Care Transition Research Consortium HCT model and the Omaha System framework and as to type of direct HCT services provided by the HCT Specialist and nurse-led interdisciplinary team conferences conducted. Findings revealed that the scope of services provided represented the scope of comprehensive needs beyond those associated with the transfer of care.