Spina Bifida Health Care Transition Toolkit

Spina bifida (SB) is the most commonly occurring complex congenital birth defect associated with long-term survival, with approximately 1,427 babies diagnosed each year in the United States (Mai et al., 2019). The American Academy of Pediatrics policy statement and the Spina Bifida Association’s (SBA) transition guidelines call for a structured process for transition planning, transfer of care, and integration into adult care with the aim of fostering gradual and developmentally appropriate acquisition of independent skills (Fremion et al., 2019). The transition guidelines include age-specific clinical questions and corresponding guidance, included in this toolkit.

A smooth health care transition (HCT) from pediatric to adult-focused practices should incorporate the life course approach, with clinicians playing a key role in the planning, transferring, and integration process. Clinicians should also assist youths and young adults within their capacity to attain health literacy, engage in self-management, and navigate the health systems from which they receive care.

Systematic reviews demonstrate that a structured HCT improves outcomes in health, patient and clinician experience, and utilization of care (Schmidt et al., 2020). Taking a structured approach to introducing young adults to adult health care practice is central to their understanding of the process and where to find assistance.

This toolkit focuses on the transition to the adult care process at a clinician and patient level. The toolkit encompasses recommendations from the AAP/American Academy of Family Physicians (AAFP)/American College of Physicians (ACP) Clinical Report on HCT (White et al., 2018), including Got Transition’s Six Core Elements of HCT. It highlights best practices from pediatric and adult programs providing recommendations for facilitating a successful transition from pediatric- to adult-focused care for youth and young adults with special health care needs, including those living with SB and their families and caregivers. 

This toolkit, developed by pediatric and adult SB clinical care experts, transition experts, and individuals with lived experience, includes resources and practice tools for pediatric and adult clinicians and young adults living with SB and their families. The audiences for this toolkit are pediatric and adult clinicians caring for this population. Adult medical practices can use this toolkit to set up a process that delegates responsibility across the team and creates a more orderly visit. 

The evidence for best outcomes in HCT is achieved with a structured process featuring 3 components: planning, transfer, and integration into adult care. Therefore, this toolkit is organized into 3 sections: Planning for Transition, which usually takes place from ages 12 to 21 years; Transfer Into Adult Care, which usually takes place from ages 18 to 22 years; and Integration and Post-transition Care in the Adult Clinic, which usually takes place from ages 18 to 26 years. 

This Spina Bifida Health Care Transition Toolkit is a joint collaborative project. View acknowledgements page for more information.