Date: 13-Nov-2019

LFA develops online self-care management programmes to empower people with lupus

The Lupus Foundation of America (LFA) is developing evidence-based, online self-management education programmemes for people with lupus to enhance disease management skills, communications with physicians, treatment adherence and quality of life. The studies will be presented this week at the American College of Rheumatology (ACR) Annual Scientific Meeting in Atlanta. Both self-management education programmes were in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. In the first study, development and usability testing of take charge: an email series to increase knowledge of self-management skills in people with Lupus, a small group of 13 individuals with lupus provided feedback on an early version of Take Charge, an email series designed to educate people with lupus about new skills to help manage their disease. Take Charge is an educational email series developed by the Lupus Foundation of America to increase knowledge of self-management skills among newly diagnosed people with lupus. An email containing information on a lupus self-management skill was distributed weekly for six weeks to subscribers. Each email provided educational information, cues to action and links to National Resource Center on Lupus material on a proven disease self-management skill, such as symptom management. When the group was asked if they tried at least one self-management skill presented in the email series, 69% of participants said ‘yes’. Almost half also indicated they used content from the emails to help them prepare questions for their next doctor’s appointment, which is the skill most participants reported doing. “This research shows email is a promising approach to address topics like preparing for doctor’s visits, explaining lupus to others, and identifying and tracking lupus symptoms. Additionally, email as a delivery method shows great potential for increasing knowledge of lupus self-management skills, because it is an easy-to-use format delivered directly to a person’s inbox,” said Karin Tse, MPH, senior research coordinator, health outcomes, at the Lupus Foundation of America. “Take Charge empowers people with lupus to take control of their health.” A second study presented at the meeting, Design and Development of an Online Intervention for Lupus Self-Management Based on the Transtheoretical Model of Change, provides insights on a programme for people with lupus to help them manage their disease through a comprehensive and customized online programme.