JMIR Publications

ABSTRACT

Background:

Personal health informatics has 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 FM patients in identifying symptom management strategies that predict their personal outcomes, and found reduced symptom levels associated with program utilization.

Objective:

The objective of this study was to determine longitudinal associations between program utilization and functional impact of FM as measured by scores on a standardized assessment instrument, the Fibromyalgia Impact Questionnaire (FIQ).

Methods:

Subjects were self-identified as diagnosed with FM and recruited via online FM advocacy websites. Subjects used an online health diary program (“SMARTLog”) reporting symptom ratings, behaviors and management strategies, and providing individualized recommendations (“SMARTProfile”) based on single subject analysis of the individual’s personal accumulated data over time. Indices of program utilization comprised cumulative numbers of SMARTLogs completed and SMARTProfiles received. Subjects included in this analysis met a priori criteria of sufficient program utilization to generate SMARTProfiles; i.e., 22+ SMARTLogs completed. Users completed the FIQ at baseline and again each subsequent month of program use as follow-up data for analysis. Kendall's tau-b (τ), a nonparametric statistic that measures both the strength and direction of an ordinal association between two repeated measured variables, was computed between all available FIQ scores and both indices of program utilization for each subject at the time of each completed FIQ.

Results:

76 users met selection criteria. Mean baseline FIQ score was 61.6 (SD=14.7), and 342 FIQ scores were used in longitudinal analysis via Kendall's τ. Statistically significant inverse associations were found over time between FIQ scores and (1) cumulative number of SMARTLogs completed (τ = -0.135, P<.0003) and cumulative number of SMARTProfiles received (τ = -0.133, P<.0009). Users who completed 61 or more SMARTLogs had mean follow-up scores of 49.9 (33.3% 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 (30% of the sample), a 15.9% drop.

Conclusions:

Significant inverse associations were found between FIQ scores and both indices of program utilization, with FIQ scored declining as utilization increased. Based on established criteria for rating FM severity, the top third of users in terms of utilization 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. Clinical Trial: ClinicalTrials.gov NCT02515552