Education and employment as young adults living with spina bifida transition to adulthood in the USA: A study of the National Spina Bifida Patient Registry.
Tiebin Liu, Lijing Ouyang, William O Walker and 12 others
PMID 36385606WHAT IT FOUND
Young adults with spina bifida in a US registry had low employment rates.
Any employment was associated with higher education, sacral-level leg function, bowel continence, private insurance, and recent non-shunt surgery.
Key findings
01The registry extract included 1909 participants aged 18 to 26 years who contributed 4379 annual clinic visit records, and the main employment analysis included 1182 participants with 2440 visits.
02At the most recent visit, 23.9% of participants were employed and 41.8% had at least some post-high school education.
03Any employment was independently associated with higher education, sacral lower extremity functional level, bowel continence, non-shunt surgery since last visit, and private health insurance.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The sample came from National Spina Bifida Patient Registry clinics, so it may not represent all young adults with spina bifida in the USA. Many participants had limited visit data, so the analysis could not fully track employment changes within the same person over time. Registry definitions for continence and other functional outcomes changed during the study period, and some outcomes relied on patient or proxy report. Employment was recorded broadly, and the analysis did not address job type, hours, pay, or why someone was not employed. The registry did not collect cognitive function, executive functioning, social skills, mental health, quality of life, or family functioning, which may influence education and employment. The study could not tell whether private insurance was held through the participant's employer or a parent, and many participants were under 26. The study compared factors and employment, not intervention groups.
Declared interests
The National Spina Bifida Patient Registry was funded by the Centers for Disease Control and Prevention. The article is marked as supported by U.S. government Public Health Service research funding.
The easy way to misread this
Do not read these associations as proof that improving education, bowel continence, mobility, surgery, or insurance will increase employment. The study was observational and did not test interventions.