2023 updates to the spina bifida transition to adult care guidelines1
Ellen Fremion, Melissa R. Kaufman, Shubhra Mukherjee, Pamela Murphy, Kathryn Smith
Abstract
PURPOSE: This article provides an update to the 2018 Spina Bifida Association's Transition to Adult Care Guidelines. METHODS: A workgroup of topic experts was convened including authors from the initial guideline workgroup. The workgroup reviewed and updated the primary, secondary, and tertiary outcome goals, clinical questions, and guideline recommendations based on a literature review. RESULTS: Twenty-two additional articles were identified from the literature search. Updated references included observational studies describing transition to adult care outcomes, transition care model initiatives, and a validated self-management assessment tool. CONCLUSION: Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.