New Canadian Research Study Asks Patients for Insights on MyLupusGuide

A new lupus study will be taking place in 2017: Measuring the impact of MyLupusGuide in Canada.  The purpose of this study is to test how the needs of people living with lupus are being met by the newly developed lupus website, MyLupusGuide, and to identify areas for further development of this website. This study will be conducted in many CaNIOScentres across Canada including, Vancouver, Edmonton, Calgary, Winnipeg, London, Hamilton, Ottawa, Quebec City, and Montreal.  Approximately 2,000 persons with lupus will be asked to participate. Lupus Canada is pleased to partner on this study by taking a lead role on the Patient Advisory Committee for the project.

Measuring the impact of MyLupusGuide in Canada 

A new lupus study will be taking place in 2017. The purpose of this study is to test how the needs of people living with lupus are being met by the newly developed lupus website, MyLupusGuide, and to identify areas for further development of this website. This study will be conducted in many CaNIOScentres across Canada including, Vancouver, Edmonton, Calgary, Winnipeg, London, Hamilton, Ottawa, Quebec City, and Montreal.  Approximately 2,000 persons with lupus will be asked to participate. MyLupusGuide website was recently developed by the Lupus Interactive Navigator (LIN) research team (lupus clinician, rheumatologist and clinical researcher, Dr Paul R. Fortin; behavioural psychologist, Dr. Deborah Da Costa; information specialist; Murray Rochon; and Carolyn Neville, research nurse) to provide persons with lupus relevant information, resources, and support to better understand and manage their illness.  The prototype for MyLupusGuide website (formerly known as the LIN) was based on results of needs assessment focus groups[1] and web-based surveys [2] of persons with lupus and health care providers.  The initial prototype was tested with persons with lupus.  The results [3] showed that all of the respondents agreed that MyLupusGuide was easy to use, would recommend it to others with lupus, and would refer to it for future questions. Very high ratings were also given to relevancy, credibility, and usefulness of the information provided.  Overall, 73% of the participants rated all topics helpful to very helpful [3].  MyLupusGuide will be accessible using the Internet with computer, tablet, or mobile device and provides information MyLupusGuiderelevant for all ages and all stages of lupus.  Important topics include, medications, complementary therapies,  strategies to manage symptoms, side effects, flares, stress, fatigue, depression, dealing with pregnancy, work, family and friends.  Videos of persons with lupus and healthcare providers discussing their experience with lupus are also provided.

Please note that this study is restricted to persons with lupus in participating CaNIOScentres, only.  However, when the study has concluded, MyLupusGuide will be available to all persons with lupus across Canada.  For more information please contact: info@lupuscanada.org

  1. Neville C, Da Costa D, Mill, C, Rochon M, Aviña-Zubieta JA, Pineau CA, Eng D, Fortin PR. The needs of persons with lupus and health care providers: A qualitative study aimed towards the development of the lupus interactive navigator. Lupus 2014;23(2):176-82.
  2. Neville C, Da Costa D, Rochon M, Eng D, Fortin PR. Towards supporting health providers and engaging people with lupus as partners in care: results of a web-based survey. JMIR Res Protoc 2014;22;3(4):e65.
  3. Neville C, Da Costa D, Rochon M, Peschken CA, Pineau CA, Bernatsky S, Keeling S, Avina-Zubieta A, Lye E, Eng D, Fortin PR. Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability. JMIR RESProtoc 2016;5(2):e44.