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

Abstract

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.

Keywords: Adolescence; adult health care; chronic illness/chronic disease; quality improvement of care; symptom management.

Figure 1.

Models of self-management and the transition to adult health care in youth with spina bifida. Parental scaffolding is the process by which a parent aids their child in skill acquisition and eventual independence by gradually removing supports as the child becomes increasingly responsible (Wood, Bruner, & Ross, 1976); Cohesion represents shared affection, support, helpfulness, and caring among family members (Moos, 1974). Mediator variables specify how (or the mechanism by which) a given effect occurs (Holmbeck, 1997). Moderator variables specify the conditions under which a given effect occurs, as well as the conditions under which the direction or strength of an effect varies (Holmbeck, 1997). We expect that the strength of the mediational pathways in the model will vary depending on the presence of certain barriers or facilitators (i.e., moderators). EXEC. FUNCT. = executive functioning; IQ = intelligence quotient; SES = socioeconomic status. [Colour figure can be viewed at wileyonlinelibrary.com]