Background MyLupusGuide is a web-based lupus interactive navigator that aims to improve patient’s confidence in their decision making about their lupus care.
Methods MyLupusGuide was modeled on the Oncology Interactive NavigatorTM with input from persons living with lupus and members of their care teams. We are conducting a randomized dissemination trial to measure the impact of MyLupusGuide on patient activation and other key psychosocial indicators. A letter of invitation was mailed out by local investigators of the Canadian Network for Improved Outcomes in SLE (CaNIOS) with information on how to enter the website. An online consent was obtained upon registration. Once the baseline questionnaires were completed, one group obtained immediate unlimited access to MyLupusGuide while the other group was informed that they would access it three months later. Besides collecting sociodemographic and self-reported disease and health status measures, we collected information on the Patient Activation MeasureTM (PAM), a valid instrument to measure self-management ability. PAM levels 1 and 2 out of a 4 level scale indicate low activation that translate into being overwhelmed with poor goal orientation, negative disposition, weaker support system, poor problem-solving skills, unclear on their healthcare role, significant knowledge gaps, and poor self-management skills. We report here on the baseline data. Descriptive statistics were performed using Wilcoxon Mann Whitney Test, Exact Pearson Chi Square Test, or a Pearson Chi Square Test, as appropriate.
Results We sent letters to 1916 patients affiliated with 10 CaNIOS centers in January 2018. A total of 571 patients responded and 541 (28.2%) completed all the baseline questionnaires. The average age was 50 (range 19–85), 93% were female with an average duration of lupus of 17 years. Three quarters of respondents were Caucasian, 55% had a college or university degree and 64% were working while 26% reported being on disability. We report in table 1 the self-reported disease characteristic at baseline using the Systemic Lupus Activity Questionnaire (SLAQ), the Lupus Damage Index Questionnaire (LDIQ) and the physical and mental component summary scores of the SF-36TM, the number of computer hour usage, the frequency of searching for medical information and the PAM. We can observe that one third (35%) of our patients have a low PAM score at baseline.
Conclusions We observed low patient self-management ability in one third of a large sample of lupus patients participating into a trial of MyLupusGuide suggesting that this vulnerable population needs additional resources to improve their confidence in self-managing their lupus.
Acknowledgements We thank the Canadian Institutes for Health Research and their Knowledge-to-Action grant program for supporting this trial. We also thank the individual CaNIOS centers and their local investigators, research assistants and patients that have made this study possible.
Trial registration The trial registration numbers are NCT02950714 and KAL-356634.
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