Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study

Abstract

Background Personal health informatics have the potential to help patients discover personalized health management strategies that influence outcomes. Fibromyalgia (FM) is a complex chronic illness requiring individualized strategies that may be informed by analysis of personal health informatics data. An online health diary program with dynamic feedback was developed to assist patients with FM in identifying symptom management strategies that predict their personal outcomes, and found reduced symptom levels associated with program use. Objective The aim of this study was to determine longitudinal associations between program use and functional impact of FM as measured by scores on a standardized assessment instrument, the Fibromyalgia Impact Questionnaire (FIQ). Methods Participants were self-identified as diagnosed with FM and recruited via online FM advocacy websites. Participants used an online health diary program (“SMARTLog”) to report symptom ratings, behaviors, and management strategies used. Based on single-subject analysis of the accumulated data over time, individualized recommendations (“SMARTProfile”) were then provided by the automated feedback program. Indices of program use comprised of cumulative numbers of SMARTLogs completed and SMARTProfiles received. Participants included in this analysis met a priori criteria of sufficient program use to generate SMARTProfiles (ie, ≥22 SMARTLogs completed). Users completed the FIQ at baseline and again each subsequent month of program use as follow-up data for analysis. Kendall tau-b, a nonparametric statistic that measures both the strength and direction of an ordinal association between two repeated measured variables, was computed between all included FIQ scores and both indices of program use for each subject at the time of each completed FIQ. Results A total of 76 users met the a priori use criteria. The mean baseline FIQ score was 61.6 (SD 14.7). There were 342 FIQ scores generated for longitudinal analysis via Kendall tau-b. Statistically significant inverse associations were found over time between FIQ scores and (1) the cumulative number of SMARTLogs completed (tau-b=–0.135, P<.001); and (2) the cumulative number of SMARTProfiles received (tau-b=–0.133, P<.001). Users who completed 61 or more SMARTLogs had mean follow-up scores of 49.9 (n=25, 33% of the sample), an 18.9% drop in FM impact. Users who generated 11 or more new SMARTProfiles had mean follow-up scores of 51.8 (n=23, 30% of the sample), a 15.9% drop. Conclusions Significant inverse associations were found between FIQ scores and both indices of program use, with FIQ scores declining as use increased. Based on established criteria for rating FM severity, the top one-third of users in terms of use had clinically significant reductions from “severe” to “moderate” FM impact. These findings underscore the value of self-management interventions with low burden, high usability, and high perceived relevance to the user. Trial Registration ClinicalTrials.gov NCT02515552; https://clinicaltrials.gov/ct2/show/NCT02515552