Improving transition readiness and quality of life (QOL) with a pediatric lupus health passport

Methods We adapted the pHLP from an adult LHP developed by the Canadian Network for Improved Outcomes in SLE (CaNIOS), by modifying the content and design to tailor to the needs of teens; and we then assessed acceptability through pilot testing and structured interviews. Patients with cSLE age 14-21 years recruited from three North American centers were instructed on the use of the pLHP. Transition readiness was assessed by a modified version of the California Healthy and Ready to Work Transition Health Care Guide, self-efficacy by a modified version of the Children’s Arthritis Self-Efficacy Scale, medication adherence by the MASRI, and SLE knowledge by a tool developed by the investigators. Baseline data is presented here.