Objective. To improve the quality and participation in pediatric rheumatology research, patient-prioritized studies should be emphasized. We collaborated with United States-based pediatric rheumatology advocacy organizations to survey patients and caregivers of children with rheumatic diseases to identify what research topics were most important to them. Methods. We conducted Web-based surveys and focus groups (FG) of patients and caregivers of children with juvenile myositis (JM), juvenile arthritis (JA), and childhood-onset systemic lupus erythematosus (cSLE). Surveys were emailed to listservs and posted to social media sites of JM, JA, and cSLE patient advocacy organizations. An initial survey asked open-ended questions about patient/caregiver research preferences. Responses were further characterized through FG. A final ranking survey asked respondents to rank from a list of research themes the 7 most important to them. Results. There were 365 JM respondents, 44 JA respondents, and 32 cSLE respondents to the final ranking survey. The top research priority for JM was finding new treatments, and for JA and cSLE, the priority was understanding genetic/environmental etiology. The 3 prioritized research themes common across all disease groups were medication side effects, disease flare, and disease etiology. Conclusion. Patient-centered research prioritization is recognized as valuable in conducting high-quality research, yet there is a paucity of data describing patient/family preferences, especially in pediatrics. We used multimodal methodologies to assess current patient/caregiver research priorities to help frame the agenda for the pediatric rheumatology research community. Patients and caregivers from all surveyed disease groups prioritized the study of medication side effects, disease flares, and disease etiology.
Bibliographical noteFunding Information:
The lead investigator, CKC, was supported by Childhood Arthritis and Rheumatology Research Alliance (CARRA) to conduct this study. The Research Committee of PARTNERS (Patients, Advocates and Rheumatology Teams Network for Research and Service) was funded by a PCORI (Patient-Centered Outcomes Research Institute) Patient Powered Research Network (PPRN-1306-04601) grant (Co-PIs Del Gaizo, Schanberg).
The authors acknowledge CARRA, and the ongoing Arthritis Foundation financial support of CARRA. The authors also acknowledge PARTNERS, Cure JM, Lupus Foundation of America, and all participants in the surveys and focus groups.
The lead investigator, CKC, was supported by Childhood Arthritis and Rheumatology Research Alliance (CARRA) to conduct this study. The Research Committee of PARTNERS (Patients, Advocates and Rheumatology Teams Network for Research and Service) was funded by a PCORI (Patient-Centered Outcomes Research Institute) Patient Powered Research Network (PPRN-1306-04601) grant (Co-PIs Del Gaizo, Schanberg). 1C.K. Correll, MD, MPH, Assistant Professor, University of Minnesota Masonic Children’s Hospital, Department of Pediatrics, Division of Rheumatology, Minneapolis, Minnesota; 2M. Dave, MBA, President, Cure JM Foundation, Encinitas, California; 3A.F. Paul, MA, MBA, Project Manager, Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; 4V. Del Gaizo, Director of Strategic Partnerships & Patient Engagement, CARRA, Milwaukee, Wisconsin; 5S. Schrandt, JD, Director of Patient Engagement, Arthritis Foundation, Atlanta, Georgia; 6R.S. Partovi, MPH, Lupus Foundation of America, Washington, DC; 7E.M. Morgan, MD, MSCE, Associate Professor, Division of Rheumatology, Cincinnati Children’s Hospital, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. Address correspondence to Dr. C.K. Correll, Pediatric Rheumatology, University of Minnesota, 2450 Riverside Ave S., East Bldg Rm 668, Minneapolis, MN 55410, USA. Email: firstname.lastname@example.org.
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- Patient preference
PubMed: MeSH publication types
- Journal Article
- Research Support, Non-U.S. Gov't