Trajectories of psychopathology and validation of the Ontario Child Health Survey—Emotional Behavioural Scales (OCHS-EBS) for children with juvenile idiopathic arthritis: a longitudinal, mixed-methods study
Project Overview
Research in the mental health of children with juvenile idiopathic arthritis (JIA) is growing, but gaps in our understanding remain. We will address these gaps by: 1–studying how the mental health of children with JIA changes and identify which children experience the largest changes over time; 2–describing what mental health means to caregivers and children with JIA, and how do they know when their mental health changes; and, 3–testing if the Ontario Child Health Survey—Emotional Behavioural Scales (OCHS-EBS) can be used to accurately measure mental health in childhood JIA.
Caregivers and children (2-16 years) diagnosed with JIA will be recruited from outpatient clinics at McMaster and Alberta Children’s Hospitals. Both hospitals serve sociodemographically-diverse populations. Online surveys will be sent to participants at recruitment, 6, 12, and 18 months. Child mental health will be measured using the OCHS-EBS and the Mini International Neuropsychiatric Interview (MINI-KID; a standardized instrument used a reference in testing the OCHS-EBS). Other measures will include disease activity, disability, parent mental health, and family resources. Statistical models will describe mental health changes over time and if the OCHS-EBS is an accurate measure (O1 & O3). A sample of caregiver-child dyads will be invited to interviews to understand the diversity of their experiences (O2). Participants will be recruited based on the child’s age and gender identity, as well as family ethnicity and socioeconomic status.
Our findings can be used for early identification and treatment of mental health in children with JIA. Understanding the impact of having JIA on mental health will allow us to develop individualized mental health services and supports. If the OCHS-EBS is found to be accurate, it will provide clinicians with a measure which can be used to assess changes to mental health and routinely be incorporated into national and international registries.
Principal Investigator
Mark Ferro , University of Waterloo
Partners and Donors
Cassie + Friends