Evaluation of spina bifida transitional care practices in the United States

Abstract

PURPOSE Recent studies have revealed that the lack of continuity in preparing patients with spina bifida to transition into adult-centered care may have detrimental health consequences. We sought to describe current practices of transitional care services offered at spina bifida clinics in the US. METHODS Survey design followed the validated transitional care survey by the National Cystic Fibrosis center. Survey was amended for spina bifida. Face validity was completed. Survey was distributed to registered clinics via the Spina Bifida Association. Results were analyzed via descriptive means. RESULTS Total of 34 clinics responded. Over 90 characteristics were analyzed per clinic. The concept of transition is discussed with most patients. Most clinics discuss mobility, bowel and bladder management, weight, and education plans consistently. Most do not routinely evaluate their process or discuss insurance coverage changes with patients. Only 30% communicate with the adult providers. Sexuality, pregnancy and reproductive issues are not readily discussed in most clinics. Overall clinics self-rate themselves as a 5/10 in their ability to provide services for their patients during transition. CONCLUSIONS Characteristics of current transitional care services and formal transitional care programs at US clinics show wide variances in what is offered to patients and families.

The National Spina Bifida Patient Registry: A Decade's journey

“…(Larson, Russ, Crall, & Halfon, ; Marmot, ; Victorino & Gauthier, ; Walker, Strom Williams, & Egede, ). As with studies of other populations with complex health care needs, studies on this topic are relevant to individuals affected by SB, as they experience many changes and challenging transitions throughout their lives (Kelly et al, ). Studies examining health disparities suggest that for some specific racial/ethnic groups, when health status is found to be inferior, it may reflect (or act in concert with) differences in existing SDH (e.g., poverty, educational opportunity, changes in the health care system) (Flores & Lin, ).…”

Spina bifida transition to adult healthcare guidelines

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How can transition to adult care be best orchestrated for adolescents with epilepsy?

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