Trajectories of self-management and independence in youth with spina bifida: Demographic predictors of growth.
Monique M Ridosh, William Adams, Fabiola Magaña and 2 others
PMID 36206540WHAT IT FOUND
Self-management skills improved slowly over time for young adults with spina bifida, but most still required supervision or assistance by age 27.
Growth rates varied by race and sex, with Black participants showing faster improvement in condition management.
Key findings
01The average total self-management score increased by 0.96 points over 8 years, indicating slow but significant growth.
02At age 18, the average total score was 3.26 on a 1-7 scale, meaning most youth required moderate assistance.
03Black participants showed a significantly steeper increase in total self-management scores over time compared to White and Hispanic/Latino participants.
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 study excluded participants who did not complete in-person interviews before the pandemic, potentially introducing bias. Race and ethnicity were collected as a combined category, limiting the ability to distinguish specific racial or ethnic effects. The sample was drawn from a specific geographic region (Chicago/Midwest), which may limit generalizability. Only two Asian participants were included, and they were removed from the analysis due to small sample size.
Declared interests
The authors declared no conflicts of interest. The study was supported by grants from the National Institutes of Health (N.I.H.).
The easy way to misread this
Do not interpret the significant growth in self-management scores as evidence that young adults with spina bifida achieve full independence. The average scores remained in the range requiring moderate assistance or supervision, indicating that most patients still need substantial support for daily management.