title: Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability.
abstract: 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.
authors.affiliation: Division of Clinical Epidemiology, Department of Medicine, McGill University Health Centre, Montreal, QC, Canada.
authors.forename: Carolyn
authors.identifier: http://orcid.org/0000-0001-7611-335X
authors.initials: C
authors.lastname: Neville
authors.forename: Deborah
authors.identifier: http://orcid.org/0000-0003-4993-4544
authors.initials: D
authors.lastname: Da Costa
authors.forename: Murray
authors.identifier: http://orcid.org/0000-0001-8893-6169
authors.initials: M
authors.lastname: Rochon
authors.forename: Christine A
authors.identifier: http://orcid.org/0000-0002-4269-5213
authors.initials: CA
authors.lastname: Peschken
authors.forename: Christian A
authors.identifier: http://orcid.org/0000-0002-4966-1526
authors.initials: CA
authors.lastname: Pineau
authors.forename: Sasha
authors.identifier: http://orcid.org/0000-0002-9515-2802
authors.initials: S
authors.lastname: Bernatsky
authors.forename: Stephanie
authors.identifier: http://orcid.org/0000-0002-5681-0622
authors.initials: S
authors.lastname: Keeling
authors.forename: Antonio
authors.identifier: http://orcid.org/0000-0001-5526-663X
authors.initials: A
authors.lastname: Avina-Zubieta
authors.forename: Elizabeth
authors.identifier: http://orcid.org/0000-0003-0057-5966
authors.initials: E
authors.lastname: Lye
authors.forename: Davy
authors.identifier: http://orcid.org/0000-0002-5093-5811
authors.initials: D
authors.lastname: Eng
authors.forename: Paul R
authors.identifier: http://orcid.org/0000-0002-7278-2596
authors.initials: PR
authors.lastname: Fortin
keywords: Systemic lupus erythematosus; empowerment; navigation; self-management; usability; web-based eHealth tool