Perceived barriers transitioning to adult healthcare among adults with spina bifida

Abstract

Background: This study examined perceived barriers to transitioning to adult healthcare among a sample of young adults with spina bifida (SB) and the degree to which these perceived barriers have impeded the transition process, and assessed relationships between these self-reported barriers and demographic and medical variables. Methods: In a large national survey conducted in 2019, young adults with SB between the ages of 18 and 30 years old (N = 326) completed a questionnaire on perceived barriers to transition, which yielded scores representing the proportion of barriers experienced and the degree of interference of these barriers. Participants included both individuals who reported that they already transitioned to adult healthcare and those who did not. Results: Participants endorsed a high number of barriers, with an average of 13 (SD = 7.39) of the 21 assessed barriers occurring for participants. Barriers were reported to be significantly interfering (M = 2.38, SD = 0.54, range: 1- 4). Higher proportions of barriers were experienced by individuals who returned to a pediatric provider after transitioning, males, employed or students, and with sacral lesion levels. Higher interference scores were reported by individuals who returned to a pediatric provider after transitioning, as well as by individuals who identified as White, and who had a shunt. Conclusion: Implications for transition programs and support are discussed.

Keywords

• Young adult
• Transition to adult healthcare
• Chronic conditions
• Spina bifida
• Barriers