What Care Models Have Generalists Implemented to Address Transition from Pediatric to Adult Care?: a Qualitative Study

Abstract

BACKGROUND: The transition from pediatric to adult care is a critical period for young adults with childhoodonset conditions. General internists are tasked with participating in the care of this vulnerable population. Existing guidelines regarding transition do not fully address structural or organizational characteristics of practices that facilitate transition. Moreover, literature regarding transition has focused on pediatric subspecialty settings, leaving internists with little guidance after transfer. OBJECTIVES: To better understand post-transfer transitional care by describing care models that primary care providers have implemented, and examining common features of generalist physicians' experiences providing transitional care. DESIGN: Qualitative methods, semi-structured interviews. PARTICIPANTS: Nineteen generalist-trained physicians from across the USA, engaged in transition-focused and/or ongoing care of adolescents and young adults with childhood-onset conditions. APPROACH: Content and grounded theory analyses. KEY RESULTS: Participants included nineteen physicians from seventeen institutions. Most (89%) were from academic medical centers. About 80% had completed a combined internal medicine-pediatrics residency. About 70% worked with clinic staff who were dedicated to transition. Practice structures fell into four main care models: (1) primary care in adult settings; (2) transition support and primary care in pediatric settings; (3) a blend of pediatric and adult care elements forming a bridge during transition; and (4) a transition consultative service. Most provided primary care for adults with childhood-onset conditions within larger adult-oriented primary care practices. Common features across interviews included taking extra time with patients both during and between visits and an interdisciplinary team-based approach. Shared practice strategies and philosophies emphasized care coordination, focus on the whole patient beyond immediate health concerns, and willingness to learn from practice and from families. CONCLUSIONS: Participants used disparate care models. Common features and strategies among interviews highlight key functions and attributes of transitional care across settings, suggest important elements of care posttransfer, and clarify the role of generalists.

Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care

“…Numerous systematic reviews of transition interventions that address transition planning, transfer assistance, and integration into adult services demonstrate positive outcomes from such interventions related to population health, continuity or adherence to care, healthcare utilization, and satisfaction with care ( 11 – 13 ). Examples of transition models range from dedicated young adult clinics within adult services, pediatric clinics with structured processes, and “bridge programs” where components of pediatric and adult care are included, e.g., dual visit models where adult and pediatric providers are both present ( 12 , 14 ). An additional distinguishing feature is whether transition models are built around a dedicated facilitator, or are based on a multi-disciplinary team approach ( 15 ).…”

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum

“…Models for providing care for children with developmental disabilities, including autism, emphasize the importance of multidisciplinary specialist teams (Bolger et al, 2017;Singh et al, 2019;Thibadeau et al, 2020), which have not been consistently replicated in adult care (Bolger et al, 2017;Thibadeau et al, 2020). In some cases, generalists based in adult care settings have found strategies to address the needs of adults with developmental disabilities during their transition to adult care (Hart et al, 2019). Detailed descriptions of how they are able to achieve this are lacking in the literature.…”