Donate Now
  • Research Completed
Managing Lupus and you: Navigate your journey with MyLupusGuide – Part I
Osteoarthritis-6.5-1
Scientific Study Title:
Empowering Patients as Active Partners in Their Care: Lupus Interactive Navigator (LIN)
Start Date:
  • October 2011
End Date:
  • September 2014
Research Category
Tags
CNDTCuObPcKpCY6crUEYRn4B3svXwMJQ9-QmU5eFW1E
Paul Fortin
Senior Scientist, Rheumatology, MD, MPH, FRCPC
ZuhM8LeVlqOWF7FaK9KXpm-YKwGXj4cPt8fTfyUM9Uo
Deborah Da Costa
Research Scientist, Psychology, PhD

Why do this research?

Reason For 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.

Methodology

Execution of Research

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 is involved?

Involvement

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.

Related Publications

  1. 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.
  2. 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.
  3. 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

Related Research

Kinesiologists-and-Exercise-Physiologists-PLS-Feature-Image-425x296-1

Preparing kinesiologists and exercise physiologists: what does this mean for arthritis care?

Read More
arc_placeholder_new

Mental health matters for people with arthritis

Read More
Early-Parenthood-and-Arthritis_PLS-Image

Early Parenthood with Arthritis: Understanding How Mental Health is Affected and Identifying Support Needs

Read More
Research-PLS_Making-Strength-Training-Easy-for-Arthritis_425x296

Making Strength Training Easy for People with Arthritis

Read More
arc_placeholder_new

Understanding the experiences of individuals with immunosuppressive conditions during the COVID-19 pandemic (UNIFIED)

Read More
arc_placeholder_new

Arthritis Wellness Program for Indigenous People – Haida Gwaii

Read More