Study Identifies Youth and Family Priorities for Childhood Lupus Research
Person- and family-centered research can greatly improve the quality and participation in research opportunities, including for childhood lupus. A new study identifies the type of research youth and families of children with childhood-onset systemic lupus erythematosus (cSLE) find most important. The three most common themes of interest reported by 55% of parents were long-term health, effects of lupus disease on organ systems, and desire for a cure. Lupus disease cause, quality of life and medication side effects were ranked by 97% of youth with lupus and 3% of parents as priority research topics.
Lead author, Colleen K. Correll, MD, MPH, Assistant Professor, University of Minnesota Masonic Children’s Hospital, Department of Pediatrics, notes, "This study was conducted by partnering with the Lupus Foundation of America (LFA) to survey youth with childhood lupus and their families to identify what types of research were most important to them.” A series of research methods were administered to youth and caregivers of children with juvenile myositis, juvenile arthritis and childhood lupus through patient networks, including the Childhood Arthritis and Rheumatology Research Alliance (CARRA), an LFA partner.
Dr. Correll adds, “Based upon our study findings, we found that patients with lupus and their family members most prioritized research that is focused on understanding the genetic and/or environmental causes of lupus, improvement in quality of life for patients with lupus, and studying medication side effects.”
Other research topics determined to be most important included pain and fatigue management, long-term health and prognosis research and causes of flares. She adds, “We hope that by sharing these findings with patients, advocacy organizations, clinicians, and researchers, that there will be an increase in funded research in these areas and there will also be greater patient participation in such studies."