Priority setting for multicenter research among adults with cerebral palsy: a qualitative study
Prepared by: AACPDM Digest reviewer/ Christa Weigel PT, DPT, PCS
Keywords:
- Cerebral palsy
- Research priorities
- Preventative care
Study Type: Qualitative descriptive study
Summary: This study explored research priorities for adults with cerebral palsy (CP) by gathering input from individuals with CP, caregivers, clinical investigators, and community leaders, through moderated focus groups. Discussions centered around three main research areas identified by the study team based on high need and high potential impact including: bone health, kidney health, and preventive care.
Thirty-nine participants (20 with lived experience, 10 clinical investigators, 9 community leaders) shared their personal and professional experiences, identified knowledge and care gaps, and ranked the importance of these areas for future research. Most participants (52%) ranked preventative care as the highest priority for adult CP research, followed by bone health (38%).
Through thematic analysis, overarching themes were identified, and illustrative quotes were collected. Participants cited a lack of provider and patient knowledge as a significant barrier to receiving care, highlighting the need for educational efforts to both health care providers as well as persons with lived experience. Due to the heterogeneity of CP, a precision medicine approach with CP-specific care guidelines that consider each individual’s risk factors is needed. Additionally, participants report ableism contributing to multifactorial barriers to receiving equitable care, including inadequate time during clinical visits, assumptions about sexual and reproductive health, and communication challenges.
By integrating the perspectives of those with lived experience, the findings in this study aim to inform a patient-centered research agenda focused on the unique healthcare needs of adults with CP and understand barriers to accessing quality care to ultimately improve their overall health outcomes.