A special issue of the Journal of Pediatric Rehabilitation Medicine provides updates to guidelines on caring for people with spina bifida throughout their lives.
An announcement about the special issue said it provides “20 important evidence- and consensus-based updates to key sections” of the guidelines issued by the Spina Bifida Association (SBA) in 2018.
“As a result of research advancements and improved team-based patient care, approximately 80-90 percent of children with spina bifida now live to adulthood in the United States,” the news announcement said. “The guidelines were written with this idea in mind and present the best evidence for what care should be delivered, regardless of the model or types of practitioners available.”
Topics covered in the updated guidelines include bowel function and care; central precocious puberty; coordination of care; health promotion and preventive healthcare; mental health; mobility; neuropsychological care; neurosurgical guidelines; nutrition, metabolic syndrome, and obesity; orthopaedic guidelines; self-management and independence; sexual health and education; short stature and human growth hormone; skin-related issues; and urologic guidelines.
Co-guest editor and SBA Medical Director Timothy John Brei, M.D., said, “These guidelines stress other issues that are important to successfully transition to adulthood including (but not limited to) family functioning, mental health, women’s and men’s health, and self- management skills in the broader societal and participation context. These guidelines acknowledge that one can have good medical health and still struggle in terms of independence and across the lifespan. So, they are not just about medical care across the lifespan, but ‘life care.’”
