We conducted a series of 5 studies, to inform the MyLupusGuide^TM.

Specifically:

• Study 1 aimed to find out what information and resources people living with lupus and their health professionals need for empowering lupus health care, disease management, and overall wellness. We held eight group discussions, with a total of 57 people (29 people living with lupus, 20 rheumatologists, and 8 health professionals) from British Columbia, Ontario, and Quebec.
• Study 2 aimed to further understand the needs and find solutions to support people with lupus and their health care providers via online surveys across Canada. The surveys were completed by 665 people with lupus, 98 rheumatologists, and 74 arthritis health professionals.
• Study 3 aimed to create and test a web-based self-management program called the Lupus Interactive Navigator (LIN) for people with Systemic Lupus Erythematosus (SLE). The LIN was developed based on earlier needs assessments and adapted from a similar tool for cancer patients. A team of medical researchers, writers, designers, programmers, clinical experts, and people with SLE worked together to create the LIN, and the content included six main topics with videos featuring rheumatologists, health professionals, and people with SLE. We then tested the LIN for usability and acceptability by 43 women with SLE from five Canadian clinics. They used the LIN for two weeks and then participated in a 30-minute phone interview to give feedback.
• Study 4 aimed to assess the levels of self-management activation in patients with SLE and identify factors associated with lower activation. The MyLupusGuide^TM was initially named the Lupus Interactive Navigator, or LIN, but after discussion with consumers, the name was changed. Consumers preferred a guide to a navigator. We used the Patient Activation Measure (PAM), a tool that evaluates a patient’s readiness and ability to manage their health and examined the relationship between PAM scores and various demographic, disease-related, communication, and psychosocial factors using statistical models. We analyzed baseline data from the MyLupusGuide^TM study, which included 541 lupus patients from 10 lupus centers.
• Study 5 aimed to evaluate the impact of MyLupusGuide^TM, a web-based program designed to help people with Systemic Lupus Erythematosus (SLE) manage their condition. In this randomized controlled online study, 541 participants were divided into two groups. One group had immediate access to MyLupusGuide^TM, while the other group had delayed access, starting three months later. Researchers measured several outcomes at the start of the study, after three months, and after six months. These outcomes included patient activation (using the Patient Activation Measure or PAM), health status, self-efficacy, coping strategies, patient-physician relationship, and medication adherence.