Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower

W Benjamin Nowell,Kelly Gavigan,Julie Birt,Carol L Kannowski,Theresa Hunter,Jennifer Workman,Jeffrey R Curtis,Zhihong Cai,Shilpa Venkatachalam

doi:10.1186/s13075-021-02430-0

Abstract

BackgroundPatient-reported outcomes (PROs) are increasingly used to track symptoms and to assess disease activity, quality of life, and treatment effectiveness. It is therefore important to understand which PROs patients with rheumatic and musculoskeletal disease consider most important to track for disease management.MethodsAdult US patients within the ArthritisPower registry with ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid arthritis, and systemic lupus erythematosus were invited to select between 3 and 10 PRO symptom measures they felt were important to digitally track for their condition via the ArthritisPower app. Over the next 3 months, participants (pts) were given the option to continue tracking their previously selected measures or to remove/add measures at 3 subsequent monthly time points (month [m] 1, m2, m3). At m3, pts prioritized up to 5 measures. Measures were rank-ordered, summed, and weighted based on pts rating to produce a summary score for each PRO measure.ResultsAmong pts who completed initial selection of PRO assessments at baseline (N = 253), 140 pts confirmed or changed PRO selections across m1–3 within the specified monthly time window (28 days ± 7). PROs ranked as most important for tracking were PROMIS Fatigue, Physical Function, Pain Intensity, Pain Interference, Duration of Morning Joint Stiffness, and Sleep Disturbance. Patient’s preferences regarding the importance of these PROs were stable over time.ConclusionThe symptoms that rheumatology patients prioritized for longitudinal tracking using a smartphone app were fatigue, physical function, pain, and morning joint stiffness.

Highlights

Patient-reported outcomes (PROs) are increasingly used to track symptoms and to assess disease activity, quality of life, and treatment effectiveness
We examined PROs voluntarily selected by participants in the ArthritisPower registry with ankylosing spondylitis (AS), fibromyalgia syndrome (FMS), osteoarthritis (OA), osteoporosis (OP), psoriatic arthritis (PsA), rheumatoid arthritis (RA), and systemic lupus erythematosus (SLE) to elucidate which disease symptoms they consider most relevant to track digitally and which PRO measures are prioritized as most important
PRO measures from physical, mental, and social health domains that were made available for selection by participants included disease-agnostic instruments developed by the National Institutes of Health (NIH) for the PatientReported Outcomes Measurement Information System (PROMIS) [19] or by Eli Lilly and Company [20,21,22,23] and, for participants with RA, a RA-specific measure of flare developed by Outcome Measures in Rheumatology Clinical Trials (OMERACT) [24]

Summary

Introduction

Patient-reported outcomes (PROs) are increasingly used to track symptoms and to assess disease activity, quality of life, and treatment effectiveness. Due to the chronic and unpredictable nature of rheumatic diseases, it is unclear how patients’ symptom-tracking and prioritization may vary over the course of their disease and its management. Such information can help determine which symptoms best reflect the perspective of people living with rheumatic disease, informing which measures researchers and clinicians ought to heed, and those that manufacturers and medical product regulators should consider when developing PRO instruments for potential labeling claims [10,11,12,13]

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