Empowering Independence in Spina Bifida: A Scoping Review of Interventions.

Abstract

Objectives: To examine intervention studies focused on developing independence readiness skills in individuals with spina bifida.

Methods: The scoping review used Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines to identify intervention studies published from 2000 to 2024. Articles were included if they were an intervention study focused on preidentified domains of independence based on the Guidelines for the Care of People with Spina Bifida by the Spina Bifida Association. Title and abstract screening and full-text articles were completed by author dyads. Data extraction was completed in duplicate to ensure accuracy by separate raters. Inconsistencies were resolved through group consensus and item review.

Results: From 2542 unique references, 2028 were removed for not meeting inclusion criteria. Following full-text review, 38 studies were included in the final analysis. Only 5 studies utilized a rigorous randomized control trial study design. Intervention gaps targeting supported decision-making models and sexual health were noted. Interventions generally targeted school-age youth to older adults, with no studies focused on interventions for early childhood populations. Outcomes measurement varied widely across studies; future research will benefit from standardization of tools used to measure outcomes of interest.

Conclusion: Intervention studies focused on increasing independence skills for individuals with spina bifida are limited. For this growing area of research, comprehensive representation of understudied and underrepresented individuals within the spina bifida community, consideration of shared data elements across studies, and alignment of targeted domains of independence with stakeholder input must be central to future research efforts.