Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

Abstract

PURPOSE: The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective. DESIGN AND METHODS: Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide. FINDINGS: Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities CONCLUSION AND CLINICAL RELEVANCE: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.