The Hidden Cost of Growing Up with Cerebral Palsy: A Qualitative Exploration of Insurance-Related Challenges Related to Transition from Pediatric to Adult Care

Background and/or Objectives: The transition from pediatric to adult healthcare often brings significant changes and uncertainties for young adults with cerebral palsy (CP) and their caregivers, including insurance-related changes that have far reaching impacts on their healthcare access. This study aimed to explore the perceived insurance-related challenges, and the impacts on healthcare access, health, and function, that adults with CP and their caregivers face when transitioning from pediatric to adult care.

Design: This qualitative descriptive study used semi-structured interviews with adults with CP and/or their caregivers.

Setting : Rehabilitation medicine clinics in academic pediatric and adult health systems in the United States.

Participants : Eligible participants were adults with a diagnosis of CP, 18 years of age or older, and active rehabilitation medicine clinic patients, and/or their caregivers. Interviews were conducted with adults with CP, their caregivers, or patient-caregiver dyads via Zoom videoconferencing or phone.

Interventions: N/A

Main Outcome Measures: We conducted an inductive, thematic analysis to better understand the insurance-related challenges that young adults with CP and their caregivers faced.

Results: We conducted 41 semi-structured interviews (7 adults with CP; 22 caregivers; 12 patient/caregiver dyads) and identified three major themes related to insurance challenges during the transition to adulthood: 1)navigating logistical complexities of insurance during the transition to adult care; 2)changes in coverage for healthcare-related services; 3)changes in coverage for rehabilitation-related services. Participants described extensive time and effort to navigate confusing insurance related changes, lack of insurance coverage for previously covered medical services (e.g., dental cleanings), and seemingly arbitrary gaps in coverage for additional services (e.g., therapies).

Conclusions: Insurance-related changes and challenges contribute to the overwhelmingly complex process of transitioning to adulthood for young adults with CP and their caregivers. Anticipatory guidance from healthcare teams, attention to the impacts of insurance changes on needed services, and advocacy from healthcare teams and families may help to mitigate disruptions in care, facilitating smoother transition processes.