Section 1: Planning for the Transition to Adult Care for Youth with Spina Bifida

The transition planning period for youth with spina bifida (SB) often occurs between ages 12 and 14 years and the age of transfer to adult care generally between ages 18 and 21 years. Timing may vary based on the care needs of individuals, their families, and the health care setting. Importantly, and unlike most other chronic health conditions, the transition to adult health care for youth with SB and their family involves transitions across many medical domains, including urology, orthopedics, neurosurgery, and others. Thus, an array of clinicians may be involved in the care of the individual, making it important to coordinate transition planning across all clinicians. 

During this extended period, pediatric clinicians, in coordination with interdisciplinary SB clinics, may implement a transition planning approach, which the SB program will provide to support the health care transition (HCT). This approach can include:

• Transition that can be conducted annually
• Transition plan of care, which includes the youth’s goals and prioritized actions
• Medical care plan, also referred to as a “medical transfer summary” and “emergency care plan.” 

In this toolkit, the term “medical care plan” is sometimes used to designate the medical transfer summary or emergency care plan.

The structure of SB care can be quite different in pediatric rather than adult care settings. In the pediatric setting, the specialty/interdisciplinary clinics may serve as the central care coordinators. However, in the adult setting, the primary care physician (PCP) typically plays a more central role in coordinating care and referring to subspecialists as needed. The availability of an interdisciplinary care clinic with specific SB care coordination support is often limited. Considering how the medical care structure differs between pediatric and adult settings, the availability of coordination of SB care may be particularly important for transitioning young adults. 

In planning for the transfer to adult health care for youth with SB, it is important to attend to transition-related milestones that occur earlier in adolescence. The smooth transfer of health care responsibilities from families and caregivers to children in early to mid-adolescence may help to set the stage for a successful transition to adult health care (Holmbeck et al., 2021). In other words, the degree to which adolescents are able to take on responsibility for their own self-management in a developmentally appropriate manner is expected to make them, and their family if applicable, more “ready” to transition to adult health care; this, in turn, should improve the likelihood of a successful transition. 

1. Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire (Ferris et al., 2015)
2. Spina Bifida: The Transition into Adulthood Begins in Infancy (Peterson et al., 1994)
3. Got Transition- Six Core Elements™ Transitioning Youth to an Adult Health Care Clinician
4. Transition Readiness Assessment for Youth with Intellectual/Developmental Disabilities
5. Factor Structure of Medical Autonomy Scales in Young People with Spina Bifida (Smith and Holmbeck, 2021)
6. Condition Self-Management in Pediatric Spina Bifida: A Longitudinal Investigation of Medical Adherence, Responsibility-Sharing, and Independence Skills (Psihogios et al., 2015)
7. Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES) (Acuña Mora et al., 2018)
8. Spina Bifida Independence Survey
9. STUDENT-LED PARENT INTERVIEW: Health Care Transition Assessment
10. Sharing of Spina Bifida Responsibilities-Young Adult
11. STARx-Questionnaire Parent Version
12. STARx-Questionnaire for Patients in the Pediatric Settings
13. Transition
14. Spina Bifida Clinic Transition Discharge Worksheet