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The MyLupusGuide: An empowering eHealth tool to support self-management of lupus
Other-Types-of-Arthritis-8.0-1
Scientific Study Title:
Dissemination of the Lupus Interactive Navigator – Measuring its uptake and impact on global health and self-care.
Start Date:
  • 2016
End Date:
  • 2018
Research Category
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Why did we do this research?

The Lupus Interactive Navigator, now renamed MyLupusGuide has been developed with the goal to provide reliable and easily accessible information to people with lupus. MyLupusGuide provides relevant information, resources, support, video interviews of patients and health care providers, and other tools to help manage lupus. It is available in both French and English. It is accessible by Internet and compatible for use with desktop PCs, tablets, and Smartphones. This study will investigate whether people with lupus will use the information and services of the MyLupusGuide regularly and whether that use leads to better self-management, improved coping, a higher sense of control over life, and overall improved health.

What did we do?

To allow us to compare results between those who have access to MyLupusGuide with those who do not have access, we chose a study design where participants from different centres would have a fifty-fifty chance of accessing the MyLupusGuide website either immediately (NOW group) or in three months (WAIT group). At the beginning of the study all participants will complete a questionnaire. We will then randomize them to either the LIN_NOW group or the LIN_WAIT group. Once participants gain access to MyLupusGuide they will receive news bulletins with information about current topics of interest including, news items and research findings. Participants will complete additional questionnaires at 3 months and 6 months. At the end of the study, we will give all participants access to MyLupusGuide.

The Research Team

Principal Investigator

  • Paul Fortin, MD, MPH, FRCPC, Senior Scientist, Rheumatology, Arthritis Research Canada (Université Laval)

Co-Principal Investigators

  • Deborah Da Costa, PhD, Research Scientist, Psychology, Arthritis Research Canada (McGill University)

Co-Investigator

  • Elham Rahme, PhD, Associate Professor, Department of Medicine, (McGill University)

How Can People Get Involved?

The MyLupusGuide research team consists of a lupus clinical expert and researcher, a clinical psychologist and behavioral researcher, and a health information specialist. We will work with several stakeholders for dissemination: Lupus Canada, the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS), the Arthritis Alliance of Canada, and lupus patient advisers. This study is being conducted in 10 Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) centres across Canada.

We launched this study on October 30, 2017 and have now closed it to recruitment.

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