A team of Canadian-based researchers have developed the Lupus Interactive Navigator (LIN), a web-based self-management program for those with systemic lupus erythematosus (SLE), that was rated as highly acceptable in content and usability by patients.

“As chronic disease models of care evolve toward self-management, it is increasingly important to develop and validate tools that support providers and engage patients. The LIN is an example of such a tool. It was very well received by patients, and considered easy to navigate with sufficient quantity and quality of content,” wrote Paul R. Fortin, MD, MPH, from the Université Laval in Quebec City, QC, Canada and colleagues.

Development of the LIN was based on results from preliminary comprehensive needs assessments and was adapted from the Oncology Interactive Navigator, a web-based tool developed for those with cancer. Medical researchers, writers, designers, and programmers worked with clinical experts and those with SLE to develop content for the LIN.

To test the content and usability of the LIN, researchers recruited 43 women meeting the 1997 SLE American College of Rheumatology SLE criteria from 5 Canadian SLE clinics based in university health centers in Vancouver, Edmonton, Winnipeg, Montreal and Quebec City. 

The average age was 43.6 (SD 15.9) years, disease duration averaged 14.1 (SD 10.8) years, 57% (21/37) were married, and 86% (32/37) had completed post-secondary education. Weekly reported average Internet usage was 15.8 (SD 24.6) hours with 2.8 (SD 0.9) hours used for health information.

The participants were provided information on how to access the LIN website and were asked to use computers, tablets, or mobile phones to browse the LIN over a 2-week period. The number of log-ins and the duration of each session were recorded for each participant. Following the 2-week testing period, participants were contacted for a 30-minute telephone interview to assess their opinions about the LIN and to identify areas for improvement. Thirty-seven of the women completed the follow-up phone interview.

Over 97% (36/37) of the participants were in high to very high agreement that the content was useful, credible, and relevant. All participants strongly agreed that they would recommend this website to others with SLE seeking information about SLE, and 89% (33/37) would refer to it to answer their own future questions about SLE. Participants also agreed that family and friends would benefit from accessing the LIN.

Somewhat lower scores were given to information about knowledge and medications, helpfulness in maintaining good health habits, and preparing for clinic visits (67-69%). 

“The information provided on the LIN may be most helpful for individuals lacking experience with the disease, such as those newly diagnosed. Our results suggest the need to tailor the content for persons with more SLE experience,” the researchers wrote.

Summary and Clinical Applicability 

The LIN tool examined in this study offers a unique way to help patients self-manage SLE.

“As chronic disease models of care evolve toward self-management, it is increasingly important to develop and validate tools that support providers and engage patients. The LIN is an example of such a tool. It was very well received by patients, and considered easy to navigate with sufficient quantity and quality of content,” the researchers wrote.

Limitations and Disclosures

The researchers address a number of potential limitations to the study:

1. Participants were recruited from tertiary care centers and tended to be well educated. They therefore may not be entirely representative of the full spectrum of persons with SLE.

2. Participants were all women; findings are therefore not generalizable to men, who represent 10% of the SLE population.

3. Most of the participants had SLE for several years, meaning their analysis of the LIN was affected by their own experience of living with SLE for that period of time. Many participants mentioned that the LIN would be useful for patients newly diagnosed with SLE.