Primary care providers need education and resources to provide optimal care for children and adults with spina bifida

J Pediatr Rehabil Med. 2021;14(4):681-689. doi: 10.3233/PRM-210039.


Purpose: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network.

Methods: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016.

Results: Among 67 respondents, 78%believed counseling families/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics. Eighty five percent of participants indicated they had exposure to SB through clinical courses or didactics in training but only 54%of participants felt knowledgeable on the impact of SB on everyday life.

Conclusion: Findings suggest a need for increased educational efforts, improved awareness of SB, and access to evidence-based guidelines for PCPs to promote accessible and coordinated care to individuals with SB.

Keywords: Patient-centered care; spina bifida; spinal dysraphism; transitional care.

MeSH terms

  • Adolescent
  • Adult
  • Caregivers
  • Child
  • Humans
  • Patient-Centered Care
  • Spinal Dysraphism* / therapy
  • Surveys and Questionnaires
  • Transition to Adult Care*