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.

Keywords: Spina bifida; myelomeningocele; transitional care.

Fig. 1

Frequency of items contained in a medical summary for adult providers, n = 29.

Fig. 2

Number of clinics performing each aspect as part of routine transitional care evaluation.

Fig. 3

Frequency that each topic is part of health assessment or education for adolescents.

Fig. 4

Frequency of assessment of patient’s ability to independently complete task n = 33.