The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions

Purpose This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions. Methods The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self‐management and the transition to adult health care; and (c) U.S.‐based and international interventions focused on the transition to adult health care in young adults with SB. Findings Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self‐management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition‐related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. Conclusions SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. Clinical Relevance The success of the process by which a child with SB transitions from pediatric to adult health care can have life‐sustaining implications for the patient.