1354 - Spina Bifida: Perspectives on Transition from Pediatric to Adult Care

Thursday, February 19, 2026

5:00 PM - 6:30 PM AST

Presenting Author(s)

RC

Rachel Casper, BS

Medical Student
Lake Erie College of Osteopathic Medicine
West Newton, Pennsylvania, United States

Co-Author(s)

DP

Darcie Petrillo, MPAS, PA-C

Certified Physician Assistant
UPMC Mercy Adult Spina Bifida Clinic
Pittsburgh, Pennsylvania, United States

Corresponding Author(s)

BD

Brad Dicianno, MD

Professor and Vice Chair for Research
University of Pittsburgh
Pittsburgh, Pennsylvania, United States

Submitter(s)

RC

Rachel Casper, BS

Lake Erie College of Osteopathic Medicine
West Newton, Pennsylvania, United States

Objectives: In the United States, 166,000 individuals are living with Spina Bifida (SB); a majority now are adults. This study’s objectives were to identify the p</span>atient and caregiver perspectives of transitioning from a multidisciplinary pediatric clinic to a unique adult clinic and to determine what transition elements drive their viewpoints. We hypothesized that patients, compared to their caregivers, would report more achievements in core elements of transition.

Design: Patients and caregivers transitioning from the Children’s Hospital of Pittsburgh SB Clinic to the UPMC Adult SB Clinic were given questionnaires during their initial visit at the adult clinic. Sixteen survey questions asking about core elements of transition (9 yes/no; 7 Likert-scale) were organized into six domains outlined by the “Got Transition” checklist: transition and care policy/guide (1 question), transition readiness (7 questions), transition planning (3 questions), transfer of care (1 question), communication (3 questions), and preparedness (1 question). Affirmative responses resulted in higher scores. The total points for each domain were calculated. Wilcoxon tests were used to compare responses from patient-caregiver dyads.

Results: A total of 39/42 (92.8%) patients and 31/42 (73.8%) caregivers completed the survey. No differences were found between patient and caregiver responses. Respondents expressed the greatest agreement in the domain of transition policy, reporting awareness of the clinic’s transition policy. Transition readiness had the lowest scores, with respondents reporting knowledge barriers about insurance. Low scores were also seen in acquisition of patient skills, like scheduling appointments and speaking with physicians privately.

Conclusions: Patients and caregivers exhibited similar perspectives on the transition process. Findings can guide healthcare teams on identifying areas of readiness for their patients/caregivers and designing interventions. Future work will examine the impact of a new transition clinic on transition readiness.