Evolving rehabilitation needs across the lifespan: a mixed methods study with adults with cerebral palsy

Understand and describe the rehabilitation needs of adults with cerebral palsy (CP) who recently established adult-based physiatric care, and how these needs have changed over time. In this convergent mixed-methods study, qualitative data were collected using semi-structured interviews with adults with CP, caregivers, and dyads of adults with CP and caregivers to explore the rehabilitation needs of adults with CP. Quantitative data were collected through retrospective review of electronic health record data from patients with CP aged ≥18 years who had been seen in the adult CP clinic at least once since April 2022. We conducted 21 interviews with 27 participants (7 adults with CP, 10 caregivers, 5 dyads) and included 73 adults with CP in quantitative data extraction. We identified three qualitative themes and integrated these with quantitative findings related to rehabilitation and healthcare needs. Themes identified included: 1) The importance of therapy access throughout the lifespan; 2) Changes in and variety of equipment needs in adulthood; and 3) Evolving rehabilitation needs and goals. Rehabilitation professionals play an important role in the ongoing care of adults with CP, including ensuring access to rehabilitative therapies, evaluating changing equipment needs, and supporting changing health-related goals. Rehabilitation professionals play an important role in the ongoing care of adults with cerebral palsy (CP), who face many challenges to healthcare access, function, and quality of life as they age.Adults with CP need access to skilled therapies, though often have difficulty accessing such therapies.The equipment and orthotic needs of individuals with CP may change as they enter adulthood and with further aging, necessitating ongoing conversations between patients, families, and rehabilitation professionals.As they age, many adults with CP and/or their caregivers may place increasing emphasis on quality of life as opposed to corrective care or invasive procedures. Rehabilitation professionals play an important role in the ongoing care of adults with cerebral palsy (CP), who face many challenges to healthcare access, function, and quality of life as they age. Adults with CP need access to skilled therapies, though often have difficulty accessing such therapies. The equipment and orthotic needs of individuals with CP may change as they enter adulthood and with further aging, necessitating ongoing conversations between patients, families, and rehabilitation professionals. As they age, many adults with CP and/or their caregivers may place increasing emphasis on quality of life as opposed to corrective care or invasive procedures.