Principal Investigator: Andrea Knight, MD, MSCE
Co-Principal Investigator: Ashley Danguecan, PhD
Funded by: Centre for Brain and Mental Health
Study Goals: To better understand the cognitive and mental health comorbidities in Childhood-onset Systemic Lupus Erythematosus (cSLE), perceived barriers to treatment, as well as the contribution of social disadvantage to cognitive, mental health and disease outcomes.
Description: This is a patient and family-engaged mixed method, single-site, cross-sectional study. We collect data from cSLE patients from two sources: clinical referrals to the SickKids lupus neuropsychology service and participants enrolled in two ongoing studies. We obtain perspectives from patients, caregivers and providers by conducting qualitative interviews.
Impact: Youth with cSLE or incipient cSLE from ethnically diverse backgrounds may have different experiences with getting help for cognitive and mental health problems, which may contribute to disparities in care. We seek to better understand how social, environmental and demographic factors may impact access to mental health care for these youth. Ultimately, we want to use this information to improve brain and emotional health outcomes for all youth with cSLE.