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.

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.

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.

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.

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.

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.

Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review.

OBJECTIVE: To identify statistically significant positive outcomes in pediatric-to-adult transition studies using the triple aim framework of population health, consumer experience, and utilization and costs of care. STUDY DESIGN: Studies published between January 1995 and April 2016 were identified using the CINAHL, Ovid MEDLINE, PubMed, Scopus, and Web of Science databases. Included studies evaluated pre-evaluation and postevaluation data, intervention and comparison groups, and randomized clinic trials. The methodological strength of each study was assessed using the Effective Public Health Practice Project Quality Assessment Tool. RESULTS: Out of a total of 3844 articles, 43 met our inclusion criteria. Statistically significant positive outcomes were found in 28 studies, most often related to population health (20 studies), followed by consumer experience (8 studies), and service utilization (9 studies). Among studies with moderate to strong quality assessment ratings, the most common positive outcomes were adherence to care and utilization of ambulatory care in adult settings. CONCLUSIONS: Structured transition interventions often resulted in positive outcomes. Future evaluations should consider aligning with professional transition guidance; incorporating detailed intervention descriptions about transition planning, transfer, and integration into adult care; and measuring the triple aims of population health, experience, and costs of care.

TRANSFER FROM PEDIATRIC TO ADULT ENDOCRINOLOGY.

OBJECTIVE: Adult and pediatric endocrinologists share responsibility for the transition of youth with type 1 diabetes from pediatric to adult healthcare. This study aimed to increase successful transfers to adult care in subspecialty practices by establishing a systematic health care transition (HCT) process. METHODS: Providers from the adult and pediatric endocrinology divisions at the University of Rochester Medical Center met monthly to customize and integrate the Six Core Elements (6CEs) of HCT into clinical workflows. Young adult patients with type 1 diabetes having an outpatient visit during a 34-month pre-post intervention period were eligible (N = 371). Retrospective chart review was performed on patients receiving referrals to adult endocrinology (n = 75) to obtain (1) the proportion of patients explicitly tracked during transfer from the pediatric to adult endocrinology practice, (2) the providers' documentation of the use of the 6CEs, and (3) the patients' diabetes control and healthcare utilization during the transition period. RESULTS: The percent of eligible patients with type 1 diabetes who were explicitly tracked in their transfer more than doubled compared to baseline (11% vs. 27% of eligible patients; P<.01). Pediatric providers started to use transition readiness assessments and create medical summaries, and adult providers increased closed-loop communication with pediatric providers after a patient's first adult visit. Glycemic control and healthcare utilization remained stable. CONCLUSION: Successful implementation of the 6CEs into pediatric and adult subspecialty practices can result in improvements of planned transfers of pediatric patients with type 1 diabetes to adult subspecialty providers. ABBREVIATIONS: 6CEs = six core elements; AYA = adolescent and young adult; DKA = diabetic ketoacidosis; ED = emergency department; HbA1c = hemoglobin A1c; HCT = health care transition.

Incorporating the Six Core Elements of Health Care Transition Into a Medicaid Managed Care Plan: Lessons Learned From a Pilot Project.

This pediatric-to-adult health care transition pilot project describes the process and results of incorporating the "Six Core Elements of Health Care Transition (2.0)" into a Medicaid managed care plan with a group of 35 18-23 year olds who have chronic mental health, developmental, and complex medical conditions. The pilot project demonstrated an effective approach for customizing and delivering recommended transition services. At the start of the 18-month project, the Medicaid plan was at the basic level (1) of transition implementation of the Six Core Elements with no transition policy, member transition readiness assessment results, health care transition plans of care, updated medical summaries, transfer package for the adult-focused provider, and assurance of transfer completion and consumer feedback. At the conclusion of the pilot project, the plan scored at level 3 on each core element. The primary reason for not scoring at the highest level (4) was because the transition elements have not been incorporated into services for all enrollees within the plan. Future efforts in managed care will benefit from starting the transition process much earlier (ages 12-14), expanding the role of nurse care managers and participating pediatric and adult-focused clinicians in transition, and offering payment incentives to clinicians to implement the Six Core Elements of Health Care Transition.

Impact of the Arthritis Foundation's Walk With Ease Program on arthritis symptoms in African Americans.

INTRODUCTION: Inadequate program design and lack of access to evidence-based programs are major barriers to the management of chronic diseases such as arthritis, particularly for African Americans. This study evaluates the effectiveness of the Arthritis Foundation's Walk With Ease Program (WWE) in a subsample of African Americans who were part of a larger study that established evidence of the program's efficacy. METHODS: Participants were African Americans (N = 117) with self-reported arthritis who chose to participate in either a self-directed (n = 68) or group (n = 49) 6-week WWE program. Arthritis-related symptoms (ie, pain, fatigue, stiffness; measured using visual analog scales) were assessed at baseline, 6 weeks, and 1 year. Independent samples t tests were conducted to examine group differences (ie, self-directed vs group) in arthritis-related symptoms at baseline, and paired sample t tests were conducted to examine differences over time (ie, baseline to 6 weeks and baseline to 1 year) in symptoms. Satisfaction was examined by descriptive statistics. RESULTS: Younger, more educated individuals chose the self-directed format (P < .001, P = .008; respectively). After the 6-week intervention, participants reported a decrease in pain (P < .001), fatigue (P = .002), and stiffness (P < .001). At 1 year, the decrease in pain (P = .04) and stiffness (P = .002) remained constant. Overall, participants were satisfied with both program formats. CONCLUSION: The individualized and group formats of the WWE program improved arthritis-related pain, fatigue, and stiffness in African Americans. Culturally appealing arthritis interventions ultimately may increase the use of existing arthritis interventions.

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.

A systematic literature review of strategies promoting early referral and reducing delays in the diagnosis and management of inflammatory arthritis.

BACKGROUND: Despite the importance of timely management of patients with inflammatory arthritis (IA), delays exist in its diagnosis and treatment. OBJECTIVE: To perform a systematic literature review to identify strategies addressing these delays to inform an American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) taskforce. METHODS: The authors searched literature published between January 1985 and November 2010, and ACR and EULAR abstracts between 2007-2010. Additional information was obtained through a grey literature search, a survey conducted through ACR and EULAR, and a hand search of the literature. RESULTS: (1) From symptom onset to primary care, community case-finding strategies, including the use of a questionnaire and autoantibody testing, have been designed to identify patients with early IA. Several websites provided information on IA but were of varying quality and insufficient to aid early referral. (2) At a primary care level, education programmes and patient self-administered questionnaires identified patients with potential IA for referral to rheumatology. Many guidelines emphasised the need for early referral with one providing specific referral criteria. (3) Once referred, early arthritis clinics provided a point of early access for rheumatology assessment. Triage systems, including triage clinics, helped prioritise clinic appointments for patients with IA. Use of referral forms standardised information required, further optimising the triage process. Wait times for patients with acute IA were also reduced with development of rapid access systems. CONCLUSIONS: This review identified three main areas of delay to care for patients with IA and potential solutions for each. A co-ordinated effort will be required by the rheumatology and primary care community to address these effectively.

A systematic literature review of strategies promoting early referral and reducing delays in the diagnosis and management of inflammatory arthritis.

BACKGROUND: Despite the importance of timely management of patients with inflammatory arthritis (IA), delays exist in its diagnosis and treatment. OBJECTIVE: To perform a systematic literature review to identify strategies addressing these delays to inform an American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) taskforce. METHODS: The authors searched literature published between January 1985 and November 2010, and ACR and EULAR abstracts between 2007-2010. Additional information was obtained through a grey literature search, a survey conducted through ACR and EULAR, and a hand search of the literature. RESULTS: (1) From symptom onset to primary care, community case-finding strategies, including the use of a questionnaire and autoantibody testing, have been designed to identify patients with early IA. Several websites provided information on IA but were of varying quality and insufficient to aid early referral. (2) At a primary care level, education programmes and patient self-administered questionnaires identified patients with potential IA for referral to rheumatology. Many guidelines emphasised the need for early referral with one providing specific referral criteria. (3) Once referred, early arthritis clinics provided a point of early access for rheumatology assessment. Triage systems, including triage clinics, helped prioritise clinic appointments for patients with IA. Use of referral forms standardised information required, further optimising the triage process. Wait times for patients with acute IA were also reduced with development of rapid access systems. CONCLUSIONS: This review identified three main areas of delay to care for patients with IA and potential solutions for each. A co-ordinated effort will be required by the rheumatology and primary care community to address these effectively.

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.

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.

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.

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.

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.