Study Develops Mental Health Research Agenda for Childhood Rheumatology
A new study prioritizes research topics regarding mental health in youth with rheumatologic diseases, such as lupus. Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Workgroup identified four major research topics that are important, feasible and actionable:
- Determining prevalence and incidence of mental health disorders in children with rheumatologic disease;
- Mental health conditions to screen;
- Accuracy of mental health screening tools specifically for pediatric rheumatology disease populations;
- And barriers and facilitators to mental health screening in the pediatric rheumatology setting.
Lead author, Tamar B. Rubinstein, MD, MS, Assistant Professor, Pediatric Rheumatology, Children’s Hospital at Montefiore and LFA Medical-Scientific Advisory Council member, notes, “During each step of developing and prioritizing this research agenda, the CARRA Mental Health Workgroup was fortunate to have active and robust participation of several different stakeholders with a vested interest in the well-being of youth with lupus. Among the participants and leaders of the project were pediatric lupus researchers, youth with lupus, parents with lupus, and psychologists who treat lupus patients.”
Dr. Rubinstein adds, “It has long been recognized by patients and providers that children, adolescents and young adults with lupus may be particularly vulnerable to symptoms of mental illness. The reasons for this are multifactorial: the disease itself may attack the brain, the medications we use to treat lupus may impact mental health, and the fact that most patients with pediatric lupus are diagnosed in adolescence – an age when mental illness is more likely to emerge – may all lead to a perfect storm of vulnerability for youth with lupus.”
Workgroup members were asked to score a list of 33 research topics. Seventy-three participants (71%) responded to the survey and the majority were pediatric rheumatologists from academic centers. Among the 33 topics, 31 were rated as highly important. “Since the formation of the CARRA Mental Health Workgroup,” Dr. Rubinstein adds, “The lupus research community has provided one of the strongest voices within the workgroup. Patients with lupus and parents of children with lupus, in particular, have been a driving force to mobilize efforts to improve mental health care within pediatric rheumatology.”
The LFA offers several resources and information for the lupus community such as The Expert Series, an educational video series featuring leading lupus experts and members of LFA’s partner organizations, such as CARRA. Learn more about childhood lupus and mental health from Andrea Knight, MD, MSCE, a senior author of the study and member of LFA’s Medical-Scientific Advisory Council.