Rehabilitation needs and healthcare utilization of adults with cerebral palsy: A mixed methods study
Prepared by: AACPDM Digest reviewer/committee member Manjula Manikandan, PhD
Keywords:
- Cerebral palsy
- Adult rehabilitation
- Healthcare utilization
Study Type: Exploratory sequential mixed methods study
Summary:
This study examined the rehabilitation needs and healthcare utilization of adults with cerebral palsy (CP) who continue to receive care within a pediatric rehabilitation medicine (PRM) setting. The study combined qualitative interviews with adults with CP and their caregivers (n = 20) and quantitative analysis of electronic health record data from 280 adults with CP seen over a two-year period in a single pediatric health system. Qualitative findings informed the quantitative analysis, and results were integrated using narrative synthesis and joint displays to characterize care needs and utilization patterns.
Three major themes emerged from the qualitative interviews. First, adults with CP and caregivers described a wide range of durable medical equipment and orthotic needs that change over time, reflecting evolving functional goals, comfort, and aging-related concerns. Second, participants highlighted the varied and ongoing role of therapy services in adulthood, including physical, occupational, speech, and other therapies. While therapies were perceived as beneficial, participants also noted challenges such as limited access, insurance barriers, scheduling difficulties, and a reduction in therapy services with increasing age. Third, adults with CP and caregivers reported high levels of rehabilitation and subspecialty care utilization, often involving frequent appointments across multiple specialties.
Quantitative findings supported these themes. Over half of adults with CP had at least one durable medical equipment prescription (53.8%), and more than a quarter had an orthotic prescription (28.2%). Nearly 58% were engaged in at least one type of therapy during the study period. Collectively, participants received care from more than 30 different medical specialties, demonstrating the complexity and intensity of healthcare utilization in this population. Despite this high level of engagement, only 7.7% of individuals had documented efforts related to transition planning toward adult-based care in their PRM records.
Overall, the study highlights that adults with CP have substantial and evolving rehabilitation needs accompanied by complex healthcare utilization patterns. The findings highlight gaps in structured transition planning and underscore the need for coordinated, longitudinal rehabilitation and healthcare services to better support adults with CP across the lifespan.