Dr. Andrea Knight, lead investigator, will present “Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease” at the 13th International Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue of Lupus Science & Medicine.
English- or Spanish-speaking youths, ages 14 to 24, with three forms of juvenile arthritis (juvenile idiopathic arthritis, systemic lupus erythematosus or juvenile dermatomyositis), and their parents were asked to complete a survey to assess the prevalence of mental health problems, the impact of disease aspects on mental health and the comfort level with mental health providers. A total of 495 patients and parents responded to the survey (140 youths and 345 parents).
From the information shared by patients and parents, the study team concluded that youths with juvenile arthritis (JA) have high rates of doctor-diagnosed and self-diagnosed mental health problems, which are impacted by their disease.
- Almost two-thirds reported anxiety issues (a total of 61%, with 39% doctor-diagnosed and 22% self-diagnosed).
- Almost half reported depression issues (a total of 44%, with 29% doctor-diagnosed and 15% self-diagnosed).
- Almost a third reported adjustment disorders (a total of 30%, with 10% doctor-diagnosed and 11% self-diagnosed).
The team also concluded that mental health intervention strategies are needed to provide education, screening and treatment for these young patients.
The study was conducted through collaboration with the Patients, Advocates & Rheumatology Teams Network for Research and Service (PARTNERS). Dr. Knight was awarded an Arthritis Foundation-CARRA Large Grant Award to fund this project. Of the 27 investigators on this study, two were from the Arthritis Foundation: Suzanne Schrandt, director of patient engagement, and Laura Marrow, science director of partnerships.
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