2023 updates to the spina bifida transition to adult care guidelines.
Ellen Fremion, Melissa Kaufman, Shubhra Mukherjee and 2 others
PMID 38160373WHAT IT FOUND
Updated guidelines recommend starting transition planning at birth and formally at age 14.
They urge using the TRAQ-SB tool to track self-management skills, ensuring bowel and bladder independence, and creating detailed hand-off packets for adult providers.
Key findings
01Transition preparation should begin between ages 12 and 14, but the trajectory toward adult independence is fostered throughout the lifespan starting at birth.
02The guidelines recommend regularly assessing self-management independence using a validated tool like the TRAQ-SB to set realistic goals.
03Optimizing bowel and bladder continence is highlighted as a major factor in promoting lifelong social participation, quality of life, and employment opportunities.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The guidelines rely heavily on expert opinion and descriptive studies, as there is limited literature evaluating the outcomes of transition interventions. Most cited studies were single-center with small sample sizes, which may limit generalizability to all spina bifida populations. The evidence base includes few randomized controlled trials, with only one SB-specific study showing no significant results for a transition workshop.
Declared interests
The paper does not explicitly state specific financial conflicts of interest for the authors in the provided text, though it notes the workgroup included authors from the initial 2018 guideline group.
The easy way to misread this
Do not interpret these guidelines as evidence that transition interventions improve outcomes. The underlying literature is largely descriptive and expert-driven, with limited data on effectiveness.