Priority setting for multicenter research among adults with cerebral palsy: a qualitative study
Cristina A Sarmiento1, Mary Gannotti2, Jocelyn Cohen3
1Department of Physical Medicine and Rehabilitation, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Purpose:
Identify priorities for adult cerebral palsy (CP) research by engaging individuals with lived experience, clinical investigators, and community leaders.
Materials And Methods:
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.
Results:
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.
Conclusions:
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.
