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.
Disability and Rehabilitation
|February 4, 2025
Summary
Preventive care is the top research priority for adults with cerebral palsy (CP). Future research should focus on improving primary and preventive care interactions for this population.
Area of Science:
- Medical research
- Public health
- Disability studies
Background:
- Adults with cerebral palsy (CP) have distinct health needs as they age.
- The current evidence base for managing adult CP care is insufficient.
- Engaging stakeholders is crucial for identifying relevant research priorities.
Purpose of the Study:
- To identify research priorities for adults with cerebral palsy (CP).
- To involve individuals with lived experience, clinicians, and community leaders in setting research agendas.
- To explore priorities in bone health, kidney health, and preventive care for adult CP.
Main Methods:
- Qualitative descriptive study utilizing iterative focus groups.
- Inductive thematic analysis was performed on focus group data.
- Participants included adults with CP, caregivers, clinical investigators, and community leaders.
Main Results:
- Four focus groups were conducted with 20 adults with CP, 10 clinical investigators, and 9 community leaders.
- Preventive care was identified as the highest research priority among adults with CP.
- Key themes included knowledge gaps, the need for precision medicine, and addressing ableism in CP care.
Conclusions:
- Preventive care is the foremost research priority for the adult cerebral palsy (CP) research agenda.
- Further research should concentrate on interventions to enhance primary and preventive care access for adults with CP.
- Addressing knowledge gaps and ableism is essential for advancing adult CP care.
