Priority setting for multicenter research among adults with cerebral palsy: a qualitative study
Creators: name: Sarmiento, Cristina A.
name: Gannotti, Mary
name: Cohen, Jocelyn
name: Hurvitz, Edward
Publisher: name: Taylor & Francis
Year: 2025
Subjects: subject: Medicine
subject: Biotechnology
subject: Geology
subject: FOS: Earth and related environmental sciences
subject: Environmental Sciences not elsewhere classified
subject: Sociology
subject: FOS: Sociology
subject: Biological Sciences not elsewhere classified
subject: Science Policy
subject: Virology

description: Identify priorities for adult cerebral palsy (CP) research by engaging individuals with lived experience, clinical investigators, and community leaders. Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. We explored research priorities among three research areas identified a priori– bone health, kidney health, and preventive care. We conducted four focus groups (20 participants with lived experience; 10 clinical investigators; 9 community leaders). Most participants felt all topic areas were very important, though preventive care emerged as the top priority. We identified three overarching themes that cut across the various research areas discussed: patient and provider knowledge gaps; a precision medicine approach for adult CP care; and the need to address ableism. Adults with CP face unique healthcare needs and risks as they age, and the evidence base to guide their care lags significantly behind. Our study identified preventive care as the top research priority for the adult CP research agenda. Next steps in this line of research should focus on interventions to facilitate primary and preventive care interactions for adults with CP. Participants identified preventive care as the top research priority for the adult cerebral palsy (CP) research agenda.Ableism is a barrier to care for adults with CP, and rehabilitation professionals should provide and advocate for equitable care and access for adults with CP.Adults with CP, caregivers, clinical investigators, and community leaders highlighted significant knowledge gaps among patients and providers alike regarding the unique health risks and needs facing adults with CP.When possible, rehabilitation professionals should use a precision medicine approach to adult CP care, which takes into account an individual’s risk factors to guide care. Participants identified preventive care as the top research priority for the adult cerebral palsy (CP) research agenda. Ableism is a barrier to care for adults with CP, and rehabilitation professionals should provide and advocate for equitable care and access for adults with CP. Adults with CP, caregivers, clinical investigators, and community leaders highlighted significant knowledge gaps among patients and providers alike regarding the unique health risks and needs facing adults with CP. When possible, rehabilitation professionals should use a precision medicine approach to adult CP care, which takes into account an individual’s risk factors to guide care.