Developing a Hospital-Wide Transition Program for Young Adults With Medical Complexity.

PURPOSE: Transitional age adults (18-24 years) are the fastest growing cohort of patients in children's hospitals across the nation. The purpose of the study was to standardize pediatric to adult healthcare transfers of complex adult patients through a tiered and multimodal population-based intervention. METHODS: The Multidisciplinary Intervention Navigation Team (MINT) was developed to decrease variations in pediatric to adult medical transitions. System-level goals were to (1) increase provider and leadership engagement, (2) increase transition tools, (3) increase use of electronic medical record-based clinical decision supports, (4) improve transition practices through development of transition policies and clinical pathways; (5) increase transition education for patients and caregivers; (6) increase the adult provider referral network; and (7) implement an adult transition consult service for complex patients (MINT Consult). RESULTS: Between July 2015 and March 2017, MINT identified 11 transition champions, increased the number of divisions with drafted transition policies from 0 to 7, increased utilization of electronic medical record-based transition support tools from 0 to 7 divisions, held seven psychoeducational events, and developed a clinical pathway. MINT has received more than 70 patient referrals. Of patients referred, median age is 21 years (range, 17-43); 70% (n = 42) have an intellectual disability. Referring pediatric providers (n = 25) reported that MINT helped identify adult providers and coordinate care with other Children's Hospital of Philadelphia specialists (78%); and that MINT saved greater than 2 hours of time (48%). CONCLUSIONS: MINT improved the availability, knowledge, and use of transition-related resources; saved significant time among care team members; and increased provider comfort around transition-related conversations.

A Multidisciplinary Transition Consult Service: Patient Referral Characteristics.

PURPOSE: Children'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 METHODS: The 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. RESULTS: The 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. CONCLUSIONS: The 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 IMPLICATIONS: An 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.

Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives.

BACKGROUND: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. METHODS: The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. RESULTS: Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly. CONCLUSIONS: The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.

Autism Spectrum Disorder and Transition-Aged Youth.

PURPOSE OF REVIEW: This article discusses common issues surrounding transition to adulthood in youth with autism spectrum disorder (ASD). We review recent evidence on co-occurring medical and mental health conditions and topics of education and employment, sexuality and relationships, independent living, and financial support. RECENT FINDINGS: Transitioning individuals with ASD have increased risk for several medical and behavioral health comorbidities and should be routinely screened for co-occurring conditions. Evidence on interventions for mental health disorders is limited but emerging, particularly with respect to mindfulness training and cognitive behavioral therapy. Many autistic adults or their families express a desire for independent living, participation in education/employment, and intimacy and social relationships, but they often lack skills and/or resources to successfully achieve these outcomes. The time of transition to adulthood for adolescents with ASD is an opportunity for physicians to provide anticipatory guidance and necessary supports around issues of community participation. To allow time for planning, these discussions should occur well before the child reaches adulthood. Clinicians should also routinely screen for and address medical and/or behavioral health comorbidities.

Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease.

AIM: To describe the longitudinal course of acquisition of healthcare transition skills among adolescents and young adults with inflammatory bowel diseases. METHODS: We recruited adolescents and young adults (AYA) with inflammatory bowel diseases (IBD), from the pediatric IBD clinic at the University of North Carolina. Participants completed the TRxANSITION Scale™ at least once during the study period (2006-2015). We used the electronic medical record to extract participants' clinical and demographic data. We used ordinary least square regressions with robust standard error clustered at patient level to explore the variations in the levels and growths of healthcare transition readiness. RESULTS: Our sample (n = 144) ranged in age from 14-22 years. Age was significantly and positively associated with both the level and growth of TRxANSITION Scale™ scores (P < 0.01). Many healthcare transition (HCT) skills were acquired between ages 12 and 14 years, but others were not mastered until after age 18, including self-management skills. CONCLUSION: This is one of the first studies to describe the longitudinal course of HCT skill acquisition among AYA with IBD, providing benchmarks for evaluating transition interventions.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

BACKGROUND: For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. METHODS: We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. RESULTS: Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. CONCLUSIONS: IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.