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.

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.

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.

Quality Measurement Gaps in Pediatric-To-Adult Health Care Transition in the United States: A Framework to Guide Development of New Measures.

PURPOSE: Pediatric-to-adult health care transition (HCT) is a critical component of care for youth and young adults (Y/YA), especially those with chronic conditions. Positive outcomes in population health, patient experience, and utilization of care for Y/YA with chronic conditions have been associated with a structured HCT approach. Despite these outcomes and professional recommendations, few Y/YA receive HCT guidance from providers. Compounding this problem is the lack of attention to HCT quality measurement to stimulate and evaluate practice improvements and ensure accountability in pediatric and adult care. METHODS: A multistep process was undertaken to develop a new HCT quality measurement framework and identify existing HCT measures from national databases. Based on an environmental scan, the framework was created, measure gaps identified, and measure concepts proposed to fill these gaps. A multistakeholder advisory committee provided guidance throughout this initiative. RESULTS: The HCT measurement framework has 11 domains: one structure domain (health organization characteristics), three process domains (clinician HCT activities, Y/YA/F activities, continuity of care), four outcome domains (population health, utilization/cost/value of care, patient experience, and clinician experience), and three mediator domains (Y/YA/F-centered care, care coordination, and Y/YA/F characteristics). The search yielded 49 potentially relevant measures but only four qualified as directly relevant to HCT. Fifty four HCT measure concepts were proposed to address these shortcomings. DISCUSSION: Pediatric-to-adult HCT quality measurement is largely absent in nationally recognized databases. This article provides a comprehensive HCT quality measurement framework, which was used to identify gaps and propose measure concepts as a roadmap for future HCT quality measurement improvements.

Implementation of Rheumatology Health Care Transition Processes and Adaptations to Systems Under Stress: A Mixed-Methods Study.

OBJECTIVES: Despite poor health care transition outcomes among young adults with pediatric rheumatic diseases, adoption of transition best practices is low. We sought to understand how structured transition processes were operationalized within pediatric rheumatology practices and what factors were perceived to enable adaptations during a global pandemic. METHODS: We conducted a mixed methods study of team leaders' experiences during an interim analysis of a pilot project to implement transition policy discussions at sites in the Childhood Arthritis and Rheumatology Research Alliance Transition Learning Collaborative. We combined quantitative assessments of organizational readiness for change (9 sites) and semistructured interviews of team leaders (8 sites) using determinants in the Exploration, Preparation, Implementation, Sustainment Framework. RESULTS: Engagement of nursing and institutional improvement efforts facilitated decisions to implement transition policies. Workflows incorporating educational processes by nonphysicians were perceived to be critical for success. When the pandemic disrupted contact with nonphysicians, capacity for automation using electronic medical record (EMR)-based tools was an important facilitator, but few sites could access these tools. Sites without EMR-based tools did not progress despite reporting high organizational readiness to implement change at the clinic level. Lastly, educational processes were often superseded by acute issues, such that youth with greater medical/psychosocial complexity may not receive the intervention. CONCLUSION: We generated several considerations to guide implementation of transition processes within pediatric rheumatology from the perspectives of team leaders. Careful assessment of institutional and nursing support is advisable before conducting complex transition interventions. Ideally, new strategies would ensure interventions reach youth with high complexity.

Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results.

The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum effect. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps. The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers. The transitional care needs of patients, healthcare teams, and caregivers is well described in the literature. While various transition readiness scales exist, no longitudinal posttransfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied. Research questions that ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n = 107), young adults/caregivers (n = 23) prioritized research surrounding improved work, school, or social function. The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

Health Care Transition in School-Based Health Centers: A Pilot Study.

Nationally, there are low rates of high school-age youth receiving health care transition (HCT) preparation from health care providers. This pilot study implemented and assessed the use of a structured HCT process, the Six Core Elements of HCT, in two school-based health centers (SBHCs) in Washington, DC. The pilot study examined the feasibility of incorporating the Six Core Elements into routine care and identified self-care skill gaps among students. Quality improvement methods were used to customize, implement, and measure the Six Core Elements and HCT supports. After the pilot, both SBHCs demonstrated improvement in their implementation of the structured HCT process. More than half of the pilot participants reported not knowing how to find their doctor's phone number and not knowing what a referral is. These findings indicate the need for incorporating HCT supports into SBHCs to help students build self-care skills necessary for adulthood.

Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe 3 potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multistakeholder research agenda development process. We focus on 3 areas: benefits, payment models, and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications.

Falling Through the Cracks: The Current Gap in the Health Care Transition of Patients With Kawasaki Disease: A Scientific Statement From the American Heart Association.

Background Health care transition (HCT) is a period of high vulnerability for patients with chronic childhood diseases, particularly when patients shift from a pediatric to an adult care setting. An increasing number of patients with Kawasaki disease (KD) who develop medium and large coronary artery aneurysms (classified by the American Heart Association according to maximal internal coronary artery diameter Z-scores ≥5 and ≥10, respectively) are becoming adults and thus undergoing an HCT. However, a poor transition to an adult provider represents a risk of loss to follow-up, which can result in increasing morbidity and mortality. Methods and Results This scientific statement provides a summary of available literature and expert opinion pertaining to KD and HCT of children as they reach adulthood. The statement reviews the existing life-long risks for patients with KD, explains current guidelines for long-term care of patients with KD, and offers guidance on assessment and preparation of patients with KD for HCT. The key element to a successful HCT, enabling successful transition outcomes, is having a structured intervention that incorporates the components of planning, transfer, and integration into adult care. This structured intervention can be accomplished by using the Six Core Elements approach that is recommended by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians. Conclusions Formal HCT programs for patients with KD who develop aneurysms should be established to ensure a smooth transition with uninterrupted medical care as these youths become adults.

Consultation Needs for Young Adults with Intellectual and Developmental Disabilities Admitted to an Adult Tertiary Care Hospital: Implications for Inpatient Practice.

BACKGROUND: Children with intellectual and developmental disabilities (IDD), particularly those with medical complexity, account for a large proportion of pediatric inpatients and are increasingly surviving to adulthood. However, few studies have evaluated the inpatient care of this population after transition to adult hospitals. This paper describes a Med-Peds Hospitalist service providing inpatient consultation for young adults with childhood conditions and offers a window into issues likely to be faced by young adults with IDD as they face increased admissions to adult hospitals. METHODS: A single center retrospective chart review was performed of adults with intellectual and developmental disabilities referred to the Med-Peds consult service at a large urban adult academic medical center. FINDINGS: The most common medical recommendations provided focused on diagnosis and management of gastrointestinal, neurologic, and respiratory issues. Coordination between pediatric and adult caregivers, disposition planning, communication and family support, and guidance on weight-based dosing were also commonly provided services. DISCUSSION: Young adults with IDD face new challenges when admitted to adult hospitals. In this single-center study, several areas were identified where expert consultation could be helpful. The need for structured coordination of care for this vulnerable patient population was highlighted. Knowledgeable consultative services may be an effective intervention to address the unique needs of hospitalized young adults with IDD. APPLICATION TO PRACTICE: Hospitals should consider structured inpatient programs, care-paths, or consultation from providers knowledgeable in the care of young adults with intellectual disabilities in order to improve the inpatient care of this population.

Associations Between Health Care Transition Preparation Among Youth in the U.S. and Other Components of a Well-Functioning System of Services.

PURPOSE: This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/continuous screening for special health care needs [SHCN], continuous/adequate health insurance, access to community-based services). METHODS: Data came from the combined 2016-2017 National Survey of Children's Health (n = 29,617 youth ages 12-17). Parents/caregivers answered questions about their child's health care experiences, which were combined to measure receipt of HCT preparation and the other five components of a well-functioning system of services. Unadjusted and adjusted analyses were conducted to examine associations, stratified by youth with and without special health care needs (YSHCN/non-YSHCN). RESULTS: About 16.7% of YSCHN and 13.9% of non-YSHCN received HCT preparation (p = .0040). Additionally, 25.3% of YSHCN and 27.3% of non-YSHCN received all five remaining components of a system of services (p = .1212). HCT preparation was positively associated with receipt of the combined five components among both YSHCN (adjusted prevalence rate ratio = 1.53, 95% confidence interval: 1.20-1.86) and non-YSHCN (adjusted prevalence rate ratio = 1.63, 95% confidence interval: 1.39-1.88). Regarding individual system of services components, early and continuous screening for SHCN was significantly associated with HCT preparation for both populations. For non-YSHCN only, having a medical home was associated with HCT preparation. The remaining three components were not associated with HCT preparation for either population after adjusting for sociodemographic characteristics. CONCLUSIONS: Among both YSHCN and non-YSHCN, HCT preparation is positively associated with receipt of early and continuous screening for SHCN as well as the five combined components of a well-functioning system of services.

Differences in Healthcare Transition Views, Practices, and Barriers Among North American Pediatric Rheumatology Clinicians From 2010 to 2018.

OBJECTIVE: Since 2010, the rheumatology community has developed guidelines and tools to improve healthcare transition. In this study, we aimed to compare current transition practices and beliefs among Childhood Arthritis and Rheumatology Research Alliance (CARRA) rheumatology providers with transition practices from a provider survey published in 2010. METHODS: In 2018, CARRA members completed a 25-item online survey about healthcare transition. Got Transition's Current Assessment of Health Care Transition Activities was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate analyses were used to compare 2010 and 2018 survey findings. RESULTS: Over half of CARRA members completed the survey (202/396), including pediatric rheumatologists, adult- and pediatric-trained rheumatologists, pediatric rheumatology fellows, and advanced practice providers. The most common target age to begin transition planning was 15-17 years (49%). Most providers transferred patients prior to age 21 years (75%). Few providers used the American College of Rheumatology transition tools (31%) or have a dedicated transition clinic (23%). Only 17% had a transition policy in place, and 63% did not consistently address healthcare transition with patients. When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and pediatric staff transition knowledge and skills (P < 0.001 for each). Nevertheless, the mean current assessment score was < 2 for each measurement. CONCLUSION: This study demonstrates improvement in certain transition barriers and practices since 2010, although implementation of structured transition processes remains inconsistent.

Pediatric Nurse Practitioners' Perspectives on Engaging Adolescents to Shift from Pediatric to Adolescent-Focused Health Care Services.

INTRODUCTION: This study examined the perspectives of pediatric nurse practitioners (PNPs) on the shift from pediatric to adolescent-focused health care services (HCS). This movement coincides with the early stages of the health care transition process. METHOD: Conference attendees (N = 170) participated in a discussion on the shift from pediatric to adolescent-focused HCS. A secondary analysis was conducted. Data were analyzed for themes using content analysis. RESULTS: Confidentiality was found to be a foundational aspect of adolescent-focused HCS. Two additional themes described adolescent-focused HCS characteristics and the role of the PNP in providing education and empowerment for adolescents and parents throughout this process. DISCUSSION: PNPs provide critical leadership in facilitating the shift to adolescent-focused care by providing HCS designed to support confidentiality, respond to the needs of adolescents, and offer education to empower adolescents and parents on the importance of adolescent-focused care and engagement in the overall health care transition process.

Integrating quality improvement into the ECHO model to improve care for children and youth with epilepsy.

OBJECTIVE: Project ECHO (Extension for Community Healthcare Outcomes), a telementoring program, utilizes lectures, case-based learning, and an "all teach-all learn" approach to increase primary care provider (PCP) knowledge/confidence in managing chronic health conditions. The American Academy of Pediatrics (AAP) Epilepsy and Comorbidities ECHO incorporated quality improvement (QI) methodology to create meaningful practice change, while increasing PCP knowledge/self-efficacy in epilepsy management using the ECHO model. METHODS: Monthly ECHO sessions (May 2018 to December 2018) included lectures, case presentations/discussion, and QI review. Pediatric practices were recruited through the AAP. Practices engaged in ECHO sessions and improvement activities including monthly Plan-Do-Study-Act cycles, team huddles, chart reviews, and QI coaching calls to facilitate practice change. They were provided resource toolkits with documentation templates, safety handouts, and medication side effects sheets. QI measures were selected from the American Academy of Neurology Measurement Set for Epilepsy. The AAP Quality Improvement Data Aggregator was used for data entry, run chart development, and tracking outcomes. Participants completed retrospective surveys to assess changes in knowledge and self-efficacy. RESULTS: Seven practices participated across five states. Average session attendance was 14 health professionals (range = 13-17). A total of 479 chart reviews demonstrated improvement in six of seven measures: health care transition (45.3%, P = .005), safety education (41.6%, P = .036), mental/behavioral health screening (32.2% P = .027), tertiary center referral (26.7%, not significant [n.s.]), antiseizure therapy side effects (23%, n.s.), and documenting seizure frequency (7.1%, n.s.); counseling for women of childbearing age decreased by 7.8%. SIGNIFICANCE: This project demonstrated that integrating QI into an ECHO model results in practice change and increases PCP knowledge/confidence/self-efficacy in managing epilepsy.

Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons.

OBJECTIVE: The number of children with complex medical conditions surviving to adulthood is increasing. A planned transition to adult care systems is essential to the health maintenance of these patients. Guidance has been established for the general health care transition (HCT) from adolescence to adulthood. No formal assessment of the performance of pediatric neurosurgeons in HCT has been previously performed. No "best practice" for this process in pediatric neurosurgery currently exists. The authors pursued two goals in this paper: 1) define the current state of HCT in pediatric neurosurgery through a survey of the membership of the American Society of Pediatric Neurosurgeons (ASPN) on current methods of HCT, and 2) develop leadership-endorsed best-practice guidelines for HCT from pediatric to adult neurosurgical health care. METHODS: Completion of the Current Assessment of Health Care Transition Activities survey was requested of 178 North American pediatric neurosurgeons by using a web-based questionnaire to capture HCT practices of the ASPN membership. The authors concurrently conducted a PubMed/MEDLINE-based literature review of HCT for young adults with special health care needs, surgical conditions, and/or neurological conditions for the period from 1990 to 2018. Selected articles were assembled and reviewed by subject matter experts and members of the ASPN Quality, Safety, and Advocacy Committee. Best-practice recommendations were developed and subjected to peer review by external expert groups. RESULTS: Seventy-six responses to the survey (43%) were received, and 62 respondents (82%) answered all 12 questions. Scores of 1 (lowest possible score) were recorded by nearly 60% of respondents on transition policy, by almost 70% on transition tracking, by 85% on transition readiness, by at least 40% on transition planning as well as transfer of care, and by 53% on transition completion. Average responses on all core elements were < 2 on the established 4-point scale. Seven best-practice recommendations were developed and endorsed by the ASPN leadership. CONCLUSIONS: The majority of pediatric neurosurgeons have transition practices that are poor, do not meet the needs of patients and families, and should be improved. A structured approach to transition, local engagement with adult neurosurgical providers, and national partnerships between pediatric and adult neurosurgery organizations are suggested to address current gaps in HCT for patients served by pediatric neurosurgeons.

Outcomes of Pediatric to Adult Health Care Transition Interventions: An Updated Systematic Review.

PROBLEM: A previous systematic review found that health care transition (HCT) interventions result in positive outcomes related to population health, patient experience of care, and utilization. Since its publication, new national statistics, updated professional guidance, and a growing body of published literature on HCT have prompted the need for an updated systematic review that aims to examine outcomes of the latest pediatric-to-adult HCT interventions. ELIGIBILITY CRITERIA: Eligible studies were published in English between May 2016 and December 2018, described HCT interventions for youth moving from pediatric to adult outpatient health care, quantitative in design, and peer-reviewed. SAMPLE: Nineteen articles from a literature search of CINAHL, OVID Medline, PubMed, Scopus, Web of Science were included in this review. RESULTS: All included studies examined youth with special health care needs. Most of the positive outcomes identified were related to population health, followed by improvements in utilization. All studies mentioned transfer assistance, most described transition planning supports, and almost half reported on integration into adult care. CONCLUSIONS: This review strengthens the evidence that a structured HCT process for youth with special health care needs can show improvements in adherence to care, disease-specific measures, quality of life, self-care skills, satisfaction with care, health care utilization, and HCT process of care. IMPLICATIONS: Future research studies should utilize interventions that incorporate all HCT components (planning, transfer, and integration) and assess provider experience of care as well as cost of care.

Health care gap affects 20% of United States population: Transition from pediatric to adult health care.

Transition-aged youth and young adults, ages 12 to 26, represent almost 20% of the US population, and an estimated 25%-35% have one or more chronic conditions. The vast majority of youth with and without special health care needs do not receive the necessary and professionally recommended services to transition from pediatric to adult care. Without adequate support during this transition, youth and young adults face an increased risk of adverse outcomes. To accelerate adoption of recommended transition processes in both pediatric and adult systems of care, the authors offer a series of implementation, payment, and research options that are consistent with clinical guidelines from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians.

US Adult Rheumatologists' Perspectives on the Transition Process for Young Adults With Rheumatic Conditions.

OBJECTIVE: To assess the attitudes and common practices of adult rheumatologists in the US regarding health care transition (HCT) for young adults with rheumatic diseases. METHODS: An anonymous online survey was sent to US adult rheumatologist members of the American College of Rheumatology to collect demographic data and information on attitudes and common practices regarding the transition process. RESULTS: Of 4,064 contacted rheumatologists, 203 (5%) completed the survey. Almost half of respondents (45.1%) were never trained in transition practices, and 74.7% were not familiar with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Consensus Statement About Transitions for Youth with Special Healthcare Needs. Only 56.2% felt comfortable caring for former pediatric patients. The vast majority of respondents (90.7%) did not have a multidisciplinary transition team, and 37% did not have a plan for transitioning pediatric patients into their practice. Most adult rheumatologists were unsatisfied with the current transition process (92.9%), due to insufficient resources, personnel (91.1%), and time in clinic (86.9%). They also were unsatisfied with referral data received concerning previous treatments (48.9%), hospitalization history (48%), disease activity index (45.1%), medical history summary (43.9%), comorbidities (36.4%), medication list (34.1%), and disease classification (32.6%). Three major barriers to HCT were lack of insurance reimbursement (33.7%), knowledge about community resources (30.8%), and lapses in care between primary provider and specialist (27.8%). CONCLUSION: This survey identified substantial gaps in knowledge and resources regarding HCT for young adults with rheumatic diseases. These may be best addressed by further training, research, dedicated resources, adequate payment, and practice guidelines.

Evaluation of a Health Care Transition Improvement Process in Seven Large Health Care Systems.

PURPOSE: Youth and young adults require systematic planning, transfer and integration into adult healthcare. A national health care transition (HCT) learning network (LN) shared strategies during monthly calls to improve HCTs using Got Transition™'s Six Core Elements. Among LN participants, we conducted a pre-post mixed-methods evaluation of this evidence-informed process improvement framework. DESIGN AND METHODS: Leaders from seven health systems in the LN recruited 55 participating practice sites (12 primary care, 43 specialty care, 47 pediatric care, and 8 adult care). Got Transition's Current Assessment (CA) of HCT Activities (possible score: 0-32) assessed implementation of HCT process improvements in all 55 sites at baseline (2015-2017) and again after 12-18 months. Pre-post results were compared overall and by type of practice (primary vs. specialty, pediatric vs. adult). In early 2018, health system leaders qualitatively described factors impacting HCT process implementation. RESULTS: Overall, baseline CA scores averaged 10.7, and increased to 17.9 after 12-18 months. Within each clinical setting, scores increased from: 10.8 to 16.5 among 12 primary care sites, 12.8 to 17.1 among 43 specialty sites, 12.4 to 17 among 47 pediatric sites, and 12 to 16.9 among 8 adult sites. All changes reached significance (p < 0.05). Qualitative feedback offered valuable feedback about motivators, facilitators and barriers to HCT process improvement. CONCLUSIONS: Participating systems made substantial progress in implementing a structured HCT process consistent with clinical recommendations using the Six Core Elements. PRACTICE IMPLICATIONS: The diverse perspectives of participating health systems provide a model for creating sustainable HCT process improvements.