The impact of a health care transition clinic on spina bifida condition management and transition planning.

ABSTRACT

BACKGROUND: To better serve the growing population of individuals with spina bifida (SB) living into adulthood, pediatric SB clinics have developed structured health care transition (HCT) supports for adolescents and young adults. Evaluating the impact of structured HCT on SB-related chronic condition outcomes and transition planning goals is needed to assess such interventions. OBJECTIVE: This study explored the impact of a SB HCT Clinic on SB-related chronic condition management outcomes (e.g., reported bowel and bladder regimens and presence of pressure injury) and transition planning goals (e.g., decision-making, insurance, and transportation). METHODS: A retrospective chart review was conducted of young adults with SB who did and did not participate in an SB HCT Clinic before establishing an adult clinic to compare SB-condition outcomes and HCT planning goals between groups. Associations between demographic and clinical variables and outcomes were also assessed. RESULTS: The HCT group (n = 68) was more likely to use a bowel regimen (P < 0.01) compared to the non-HCT group (n = 94). There were no differences regarding bladder regimens or incidence of pressure injuries. For HCT planning, the groups differed regarding decision-making supports (P = 0.01). Additionally, the HCT group was more likely to use self-transportation (P = 0.01) or Medicaid transportation (P < 0.01). CONCLUSION: This single-center HCT program improved the use of a bowel regimen at the time of transfer to adult care and impacted HCT planning regarding decision-making and transportation. These initial findings support the need for further development and assessment of HCT programs for this population.