Neville Carolyn, Da Costa Deborah, Rochon Murray, Peschken Christine A, Pineau Christian A, Bernatsky Sasha, Keeling Stephanie, Avina-Zubieta Antonio, Lye Elizabeth, Eng Davy, Fortin Paul R
Division of Clinical Epidemiology, Department of Medicine, McGill University Health Centre, Montreal, QC, Canada.
JMIR Res Protoc. 2016 May 30;5(2):e44. doi: 10.2196/resprot.4219.
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.
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.
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.
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.
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.
系统性红斑狼疮（SLE）是一种严重、复杂的慢性疾病。与大多数其他慢性疾病状态类似，人们对帮助SLE患者参与疾病管理有着浓厚兴趣。
本研究的目的是：（1）开发狼疮互动导航器（LIN），这是一个针对SLE患者的基于网络的自我管理程序；（2）测试LIN的可用性和可接受性。
LIN开发平台基于初步全面需求评估的结果，并改编自肿瘤互动导航器，后者是一个为癌症患者开发的基于网络的工具。医学研究人员、作家、设计师和程序员与临床专家及SLE患者合作，为LIN开发内容。LIN的可用性和可接受性在符合美国风湿病学会标准的SLE患者中进行测试，这些患者从加拿大的五家SLE诊所招募。为参与者提供LIN的访问权限，并要求他们在两周内使用。测试期结束后，联系参与者进行30分钟的电话访谈，以评估可用性和可接受性。
LIN的内容分为六个主要信息主题，并有风湿病学家、相关健康专业人员和SLE患者的访谈视频。对43名SLE女性患者测试了LIN的可用性和可接受性。其中，37名（86%）完成了电话访谈。平均年龄为43.6（标准差15.9）岁，疾病持续时间平均为14.1（标准差1
