Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability

BACKGROUND: Systemic Lupus Erythematosus (SLE) is a serious, complex, and chronic illness. Similar to most other chronic illness states, there is great interest in helping persons with SLE engage in their disease management. OBJECTIVE: The objectives of this study were to (1) develop the Lupus Interactive Navigator (LIN), a web-based self-management program for persons with SLE, and (2) test the LIN for usability and acceptability. METHODS: The LIN development platform was based on the results of preliminary comprehensive needs assessments and adapted from the Oncology Interactive Navigator, a web-based tool developed for persons with cancer. Medical researchers, writers, designers, and programmers worked with clinical experts and persons with SLE to develop content for the LIN. Usability and acceptability of the LIN was tested on individuals with SLE meeting American College of Rheumatology criteria, who were recruited from five Canadian SLE clinics. Participants were provided with access to the LIN and were asked to use it over a two-week period. Following the testing period, participants were contacted for a 30-minute telephone interview to assess usability and acceptability. RESULTS: The content for the LIN was subdivided into six primary information topics with interview videos featuring rheumatologists, allied health professionals, and persons with SLE. Usability and acceptability of the LIN was tested on 43 females with SLE. Of these, 37 (86%) completed telephone interviews. The average age was 43.6 (SD 15.9) years and disease duration averaged 14.1 (SD 10.8) years. Median time spent on LIN was 16.3 (interquartile range [IQR]:13.7, 53.5) minutes and median number of sessions was 2 (IQR: 1, 3). Overall, Likert ratings (0=strongly disagree; 7=strongly agree) of website usability and content were very high, with 75% scoring >6 out of 7 on all items. All participants agreed that LIN was easy to use, would recommend it to others with SLE, and would refer to it for future questions about SLE. 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. Participants who reported more prior knowledge about SLE rated items regarding improvement in knowledge and helpfulness relatively lower than persons with less prior knowledge. Most participants commented that the LIN would be very useful to those newly diagnosed with SLE. Minor revisions were recommended. CONCLUSIONS: This study furthers the understanding of the needs in the SLE community and delivers a unique eHealth tool to promote self-management in persons with SLE. The LIN was found to be highly acceptable in content and usability. The information provided on LIN may be most helpful for individuals with less experience with the disease, such as those newly diagnosed, indicating the need to tailor the content for persons with more SLE experience.