Barriers to Transition From Pediatric to Adult Care

A Systematic Review

Wendy N. Gray, PHD; Megan R. Schaefer, MS; Alana Resmini-Rawlinson, PHD; Scott T. Wagoner, MA

Disclosures

J Pediatr Psychol. 2018;43(5):488-502. 

In This Article

Abstract and Introduction

Abstract

Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations.

Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, Web of Science, and the Cochrane library databases were searched. Peer-reviewed English articles presenting original data on barriers to transition to adult care, focused on a specific pediatric chronic illness population, and conducted in the United States were included. Study design, population, and barriers were extracted. Barriers were categorized according to the Socioecological Model of Adolescent/Young Adult Readiness to Transition. Articles were evaluated for study quality.

Results: Fifty-seven articles were included. The most common barriers to transition fell within the "Relationships" domain (e.g., difficulties letting go of long-standing relationships with pediatric providers) followed by "Access/Insurance" (e.g., difficulty accessing/finding qualified practitioners, insurance issues), and "Beliefs/Expectations" (e.g., negative beliefs about adult care). Barriers related to "Knowledge" (e.g., limited patient/caregiver knowledge about medication/illness and the transition process) and "Skills/Efficacy" (e.g., lack of self-management skills) were also common. While relationship barriers were commonly reported by all, some barriers varied by transfer status (pre- vs. posttransfer).

Conclusions: Each chronic illness group experiences illness-specific challenges but certain barriers transcend chronic illness populations. Suggestions to overcome these barriers are provided.

Introduction

Over 90% of children with chronic health conditions will survive into adulthood (Pai & Schwartz, 2011), posing challenges for health care providers to prepare adolescent and young adult patients (AYAs) with the skills necessary to transition to the adult world. Transition is defined as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems" (Blum et al., 1993, p. 570). Transition spans pediatric and adult care. Transfer, on the other hand, is a discrete event occurring within transition involving the actual hand-off from the pediatric to adult provider.

In an ideal transition, AYAs receive uninterrupted, developmentally appropriate medical care. Successful transition may mean patients meet specific health outcomes, such as an A1c <7.0% in diabetes (Chiang, Kirkman, Laffel, & Peters, 2014), or demonstrate positive health behaviors, such as high adherence (Annunziato et al., 2007), independent self-management skills (Sobota, Umeh, & Mack, 2015), or attending appointments with an adult provider (Reid et al., 2004). Unfortunately, transition to adult care is associated with many negative outcomes, such as nonadherence (Pai & Ostendorf, 2011), missed medical appointments (Cole, Ashok, Razack, Azaz, & Sebastian, 2015), and poor health outcomes (Annunziato et al., 2007).

A recent Cochrane review (Campbell et al., 2016) concluded there is currently low evidence for the effectiveness of transition interventions. This, combined with the above negative outcomes, suggests that something is getting in the way of achieving optimal transition outcomes. Thus, to improve transition to adult care, we need to understand what gets in the way (i.e., barriers). Currently, transition research in each disease group is developing independent of other chronic conditions and cross-disease resources are under-utilized. In a national survey of pediatric gastroenterologists, only half were aware of the transition guidelines published by the American Academy of Pediatrics (American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians, 2002). Less than 15% of those who were aware reported that their approach to inflammatory bowel disease (IBD) transition was "mostly" or "entirely" based on these guidelines (Gray & Maddux, 2016). We know transition does not occur in a vacuum and multiple individuals and broader systems play a role, yet most research on transition has focused on individual variables (Schwartz, Tuchman, Hobbie, & Ginsberg, 2011). To move forward, we must move beyond isolated patient variables.

The Socioecological Model of AYA Readiness for Transition (SMART) is an expert-informed, theory- and data-driven model of transition readiness capturing systems-level barriers and facilitators of transition readiness (Schwartz et al., 2011). Barriers to transition include: (1) preexisting factors (sociodemographics and culture, health care access/insurance, health status/risk), and (2) interrelated components (development, knowledge, skills/efficacy, beliefs/expectations, goals, relationships, and psychosocial functioning). SMART is generalizable to different medical conditions and provides the ideal framework to identify barriers to transition within and across chronic illnesses.

The aim of this systematic review is to use SMART to summarize the literature on barriers to transition. A review of this nature is needed to unify the transition literature and go beyond our current focus and understanding of isolated patient variables occurring within isolated chronic illnesses. Existing reviews on transition do not assess barriers (Campbell et al., 2016; Gabriel, McManus, Rogers, & White, 2017) or assess barriers published between 2010 and 2014 (Zhou, Roberts, Dhaliwal, & Della, 2016), resulting in an incomplete picture. This is the first review using a theoretical model and the methodological rigor of a systematic review to capture the entire literature. Based on our research and clinical experience, we expected the most common barriers to occur in the "Relationships" and "Skills/Efficacy" categories of SMART. We conclude with a discussion of research-informed solutions to overcome the most frequently reported barriers.

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