Investigating characteristics of idiopathic inflammatory myopathy flares using daily symptom data collected via a smartphone app

Abstract

Objective: The objective of this study was to use daily data collected via a smartphone app for characterization of patient-reported and symptom-based (using an a priori definition) flares in an adult idiopathic inflammatory myopathy (IIM) cohort.

Methods: UK adults with an IIM answered patient-reported outcome measurements (PROMs) daily via a smartphone app during a 91-day study. Daily symptom PROMs addressed global activity, overall pain, myalgia, fatigue, and weakness (on a 0-100 visual analogue scale). Patient-reported flares were recorded via a weekly app question. Symptom-based flares were defined via an a priori definition related to increase in daily symptom data from the previous 4-day mean.

Results: Twenty participants (65% female) participated. Patient-reported flares occurred on a median of 5 weeks (IQR 3, 7) per participant, out of a possible 13. The mean of each symptom score was significantly higher in flare weeks, compared with non-flare weeks (e.g. mean flare week myalgia score 34/100, vs 21/100 during non-flare week, t test P-value <0.01). Fatigue accounted for the most symptom-based flares [incidence-rate 23/100 person-days (95% CI 19, 27)], and myalgia the fewest [incidence rate 13/100 person-days (95% CI 11, 16)]. Symptom-based flares typically resolved after 3 days, although fatigue-predominant flares lasted 2 days. The majority (69%) of patient-reported flare weeks coincided with at least one symptom-based flare.

Conclusions: IIM flares are frequent and associated with increased symptom scores. This study has demonstrated the ability to identify and characterize patient-reported and symptom-based flares (based on an a priori definition), using daily app-collected data.

Keywords: epidemiology; mobile health; muscle; muscle disease; myositis.

Fig. 1

Example of a single flare of weakness using the symptom-based definition for a single participant with identified parameters displayed

Fig. 2

Illustration of concordance between patient-reported and symptom-based flares Panel A—patient-reported flare week with symptom-based flare (weakness) identification; Panel B—patient-reported flare week without symptom-based flare identification; Panel C—patient-reported non-flare week with symptom-based flare (fatigue) identified; Panel D—patient-reported non-flare week without identification of symptom-based flare. PR: patient-reported.