Managing Lupus and you: Navigate your journey with MyLupusGuide – Part I
Study Title: Empowering Patients as Active Partners in Their Care: Lupus Interactive Navigator (LIN)
Principal Investigator: Paul Fortin, MD, MPH, FRCPC, Research Scientist, Arthritis Research Canada; Tenured Professor and Canada Research Chair on Systemic Autoimmune Rheumatic Diseases, Centre de Recherche, Université Laval
Start Date: October 2011 End Date: September 2014
Why do this research? – Systemic lupus erythematosus (SLE) is a rare disease that can affect many organs in the body and often requires complicated treatments. SLE can cause serious complications over time and has a significant impact on the quality of life for people who have this disease. We wanted to change how we approach the care of people with lupus because of the following factors:
- Mortality due to early disease and infections and from late disease damage (cardiovascular and other) remains disproportionately high compared to same age and gender people.
- Control of disease activity is not optimal (In Canada one in three people with lupus has either high or very high lupus activity).
- Quality of life in people with lupus remains poor and is often comparable to older people with advanced stage lung or heart disease
The objectives of this study were to (1) develop the Lupus Interactive Navigator (LIN)*, a web-based self-management program for people with SLE, and (2) test the LIN for usability and acceptability.
What was done: We developed The Lupus Interactive Navigator (LIN) with the goal to provide reliable and easily accessible information to people with lupus. We believe this web-based program can help people with lupus better understand and manage their illness. Medical researchers, writers, designers, and programmers worked with clinical experts and people with SLE to develop content for the LIN. We tested the usability and acceptability of the LIN on individuals with SLE meeting American College of Rheumatology criteria. We gave participants access to the LIN and asked them to use it over a two-week period. Following the testing period, we contacted participants for a 30-minute telephone interview to assess usability and acceptability.
Who was involved? We based the content for the LIN on the results of web-based surveys and focus group discussions with SLE patients, rheumatologists, and allied health professionals. We recruited participants with SLE from five Canadian SLE clinics
Participation in the study: We launched this study in 2012 and it is now closed to recruitment.
Co-Principal Investigators: Louise Bergeron, lupus patient and volunteer with the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) and Lupus Canada; Deborah Da Costa MA, PhD, Associate Professor, Department of Medicine, McGill University;,
Co-Investigators: Stephanie Keeling, Elaheh Aghdassi, Antonio Avina-Zubieta, Murray Baron, Susan Barr, Sasha R Bernatsky, Gilles Boire, Gaelle Chedeville, Judah A Denburg, John Hanly, Dante Morra, Christine A Peschken, Janet Pope, Earl Silverman, Carter Thorne, Lori B Tucker, Michel Zummer
Funding Agency: This study is funded by the Canadian Institutes of Health Research (CIHR)
*The Lupus Interactive Navigator has now been renamed ‘MyLupusGuide’.
- Neville C, Da Costa D, Rochon M, Peschken CA, Pineau CA, Bernatsky S, Keeling S, Avina-Zubieta A, Lye E, Eng D, Fortin PR (2016) Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability. JMIR Research Protocols, 5(2):e44.
- Neville C, Da Costa D, Rochon M, Eng D, Fortin PR (2014) Toward the development of a lupus interactive navigator to facilitate patients and their health care providers in the management of Lupus: results of web-based surveys. JMIR Research Protocols, 3(4): e65.
- Neville C, Da Costa D, Mill C, Rochon M, Arch B, Aviña-Zubieta JA, Pineau CA, Eng D, Fortin PR (2014) The needs of persons with lupus and health care providers: a qualitative study aimed toward the development of the Lupus Interactive Navigator™. Lupus, 23(2): 176-182.
ROAR video presentation of Dr. Fortin presenting on the MyLupusGuide