Principal Investigator: Andrea Knight, MD, MSCE
Co-Investigators: Chelsea DeCoste, MD, Alene Toulany, MD, MSc, FRCPC, Deborah Levy, MD, MS, FRCPC, Linda Hiraki, MD, FRCPC, MS, ScD, Alaa Shehab, MD
Study Goal: The purpose of this study is to describe the model of care provided by Adolescent Medicine in the Lupus Clinic at SickKids.
Description: This study includes two components: retrospective chart review of patients seen in Lupus Clinic, and a prospective electronic cross-sectional survey (and chart review) of lupus patients seen by Adolescent Medicine.
Impact: There is sparse literature characterizing the breadth and burden of adolescent health issues and factors associated with adolescent health issue burden in Childhood-onset Lupus Erythematosus (cSLE) patients. This study aims to better understand how to provide optimal comprehensive care to adolescents being followed in paediatric lupus clinics. With this knowledge, we hope to be able to identify potential barriers and facilitators to high quality adolescent health care in these patients to further optimize care and determine future areas of research.