Abstract
PurposeThis study aimed to understand and describe the rehabilitation and care complexity needs of adults with cerebral palsy (CP) receiving care in a pediatric healthcare setting.MethodsThis was an exploratory sequential mixed-methods study. Qualitative data included 20 semi-structured interviews with adults with CP and caregivers. Quantitative data included electronic health record data from adults with CP who were active pediatric rehabilitation medicine (PRM) patients over a two-year period at a pediatric health system (N = 280). Results from analyses were mixed and merged through narrative and joint display approaches.ResultsThree qualitative themes were identified: 1) Wide range of equipment and orthotic needs that change over time; 2) Various roles of therapies in adulthood; and 3) High levels of rehabilitation and subspecialty care utilization. Quantitatively, n = 150 (53.8%) had equipment prescription(s), n = 79 (28.2%) had orthotic prescription(s), and n = 162 (57.9%) were actively engaged in at least one type of therapy. Participants cumulatively saw over 30 types of specialists. Only n = 21 (7.7%) had documented transition efforts during their PRM visits.ConclusionWhile the rehabilitation needs of individuals with CP evolve over time, adults with CP have high rehabilitation and overall healthcare utilization needs. This can complicate the transition to adult-based care and underscores the importance of comprehensive and longitudinal transition processes.