Transitioning to an Adult Healthcare System: Barriers and Opportunities For Youth With Spina

Amanda Squiers; Melanie Lutenbacher; Melissa R. Kaufman; Sharon M. Karp


Pediatr Nurs. 2017;43(6):289-298. 

In This Article

Abstract and Introduction


This quality improvement project aimed to identify barriers and opportunities for successful transition from pediatric to adult health care for a clinic sample of youth with spina bifida. Pediatric patients (N = 16) with spina bifida between the ages of 14 and 21 years and a family member were recruited from the Spina Bifida Clinic at a large regional medical center to participate in a face-to-face semi-structured interview. A standard guide, including select questions from the National Survey of Children with Special Health Care Needs along with inquires specific to the population and clinic setting, were used for each interview. The Health Services Utilization model provided an overall conceptual framework. A total of 16 interviews with patients and family member were completed. Only 25% of the participants reported previous conversation with their pediatric providers regarding transition to adult health care. Meeting adult providers prior to transition (93.8%), a desire for a written transition plan (68.8%), and possessing a copy of the transition policy (68.8%) were identified as beneficial in transition planning. Qualitative findings suggest that parents of children with greater intellectual and physical disability reported increased worry surrounding transition when compared to parents of higher functioning children. Despite availability of published recommendations regarding transition for over a decade, challenges in transition preparation among pediatric patients with spina bifida remain. Feedback from families highlights the need for increased planning, particularly for those with greater functional impairments. Findings will guide the development of a local clinic transition program to address concerns and implement key interventions identified for youth with spina bifida, and offer insight that other nurses and clinics may use in their own settings. Results underscore the ongoing, and as yet, unmet concerns of patients and families.


Spina bifida is a neural tube defect affecting 3.49 out of every 10,000 births in the United States (Centers for Disease Control and Prevention [CDC], 2014). Historically, children born with spina bifida rarely survived past their second decade (Bowman, McLone, Grant, Tomita, & Ito, 2001). Currently, advancements in surgical and medical management have resulted in 85% of children affected with spina bifida living into adulthood (Mukherjee, 2007). Evidence suggests youth with special healthcare needs, such as those with spina bifida, face greater challenges making such predictable transitions to adult care (American Academy of Pediatrics [AAP], American Academy of Family Physicians [AAFP], American College of Physicians-American Society of Internal Medicine [ACP-ASIM], 2002). As a result, patients may forgo regular care once dismissed from pediatric clinics, resulting in an eventual decline in health as they age (Okumura, Hersh, Hilton, & Lotstein, 2013).

Recognition of this critical milestone and the associated challenges has led to increased attention on how best to prepare youth with special healthcare needs and their families to more seamlessly move from pediatric to adult care. This report describes a pilot quality improvement project to enhance the experiences of youth with spina bifida as they transition from pediatric to adult health care in a large Northwestern regional medical center. The purpose of this project was to identify and describe perceived barriers and opportunities to successful transition from pediatric to adult health care in a clinic sample of youth with spina bifida receiving care at the medical center. Project findings provide the foundation for the development and implementation of a formal transition program to meet the needs of youth with spina bifida and their families.