Measures of Readiness to Transition to Adult Health Care for Youth With Chronic Physical Health Conditions: A Systematic Review and Recommendations for Measurement Testing and Development

Improvements in survival rates for youth with chronic physical health conditions have yielded a growing population of adolescents and young adults (AYA) in need of adult-focused medical care (American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians, 2011). Although the transfer to adult-focused care is often medically and developmentally indicated, pediatric providers frequently struggle with the transition process—specifically determining when and how to plan for the transfer of care. The transfer of care is often poorly executed, resulting in inappropriate health care utilization (White, 2002), nonadherence to medical treatments (Annunziato et al., 2007), failure to establish a connection with an adult medical provider (Tuchman, Slap, & Britto, 2008), and continued care in the pediatric setting by default (Blum et al., 1993). Consequences of inadequate or inappropriate care due to poor transition planning include onset of secondary disabilities (Williams, 2009) and increased rates of hospitalization (Gurvitz et al., 2007). On the other hand, a well-planned transition has benefits as indicated by patient-reported satisfaction with care, increase in self-management following transfer, and improved empowerment (Tuchman et al., 2008). To improve the transition process, a new clinical algorithm was created (American Academy of Pediatrics et al., 2011) and a related “toolkit” (www.gottransition.org) has been disseminated. Both the algorithm and toolkit emphasize the importance of tracking transition readiness. A review of the literature indicates that transition readiness is best defined as indicators that the AYA and their medical support system (family and medical providers) can begin, continue, and finish the transition process through the discrete event of transfer (Betz & Telfair, 2007; Schwartz et al., 2013; Telfair, Alexander, Loosier, Alleman-Velez, & Simmons, 2004). It involves multiple components, is measurable, and is potentially modifiable before transfer (Schwartz, Tuchman, Hobbie, & Ginsberg, 2011). Thus, it is critical to track and promote transition readiness among AYA patients to prepare them to successfully engage in adult medical care. Supports or interventions can be put into place to improve transition readiness, referred to as transition planning (Schwartz et al., 2011). Despite the clinical algorithm and toolkit intended to enhance the transition process, there is little consensus on the essential components of transition readiness and progress in developing evidence-based assessments for tracking transition readiness has been slow. Extant research has focused on age, skills, and knowledge as components of transition readiness without exploration of broader social-ecological associates such as relationships, socioeconomic factors, and psychosocial factors related to multiple stakeholders in the process (Betz, 2000; Cappelli, MacDonald, & McGrath, 1989). Advancing measurement of transition readiness is essential to better understand intervention targets to enhance the likelihood of engagement in the adult health care system following transfer (Schwartz et al., 2011; 2013). Specifically, evidence-based transition readiness assessments are important for both clinical and research purposes for tracking progress of readiness over time, identifying targets of intervention, assessing outcomes of intervention, and allowing comparisons of transition readiness across cohorts and clinics (Schwartz et al., 2011; 2013). While many transition readiness measures have been developed, most are new, not widely used, and have not been well tested. Furthermore, while other reviews of transition-related measures have recently been published, they have not included clear recommendations for further measurement testing and development (Stinson et al., 2013; Zhang, Ho, & Kennedy, 2014). Thus, the current article provides a systematic review of published measures of transition readiness for AYA with chronic physical health conditions to provide clinicians and researchers guidance on choosing and developing transition readiness measures for their population of interest. Strengths of this systematic review include strict inclusion criteria of published self-described transition readiness measures with evaluable data; descriptions of all the measures, including theoretical background and psychometrics; guidance on choosing measures; and recommendations for future research in transition readiness measure development. Specifically, the goals of this review are to (1) review existing published measures of transition readiness with psychometric data; (2) classify measures using American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria (Cohen et al., 2008) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher, Liberati, Tetzlaff, & Altman, 2009); (3) evaluate strengths and weaknesses of the measures; and (4) make recommendations for future research and measurement development for transition readiness.