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. 2021 Feb 10;23(1):53.
doi: 10.1186/s13075-021-02430-0.

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

W Benjamin Nowell  1 , Kelly Gavigan  2 , Carol L Kannowski  3 , Zhihong Cai  4 , Theresa Hunter  3 , Shilpa Venkatachalam  2 , Julie Birt  3 , Jennifer Workman  3 , Jeffrey R Curtis  5
Affiliations

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

W Benjamin Nowell et al. Arthritis Res Ther. .

Abstract

Background: Patient-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.

Methods: Adult 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.

Results: Among 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.

Conclusion: The symptoms that rheumatology patients prioritized for longitudinal tracking using a smartphone app were fatigue, physical function, pain, and morning joint stiffness.

Keywords: Patient-reported outcomes; Real-world evidence; Rheumatoid arthritis.

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Conflict of interest statement

Financial interests of the authors which could create a potential conflict of interest or the appearance of a conflict of interest with regard to the work are as follows:

  1. WBN is the Principal Investigator on grants/contracts from Eli Lilly and Company and Patient-Centered Outcomes Research Institute (PCORI) and an employee of the Global Healthy Living Foundation (GHLF). GHLF receives grants, sponsorships, and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners/.

  2. KG and SV have no personal conflicts of interests to disclose and are employees of the Global Healthy Living Foundation (GHLF).

  3. CK, ZC, TH, JB, and JW are employees of Eli Lilly and Company and own stock in the company.

  4. JRC receives grants and personal fees from AbbVie, Amgen, BMS, Corrona, Eli Lilly and Company, Janssen, Myriad, Pfizer, Regeneron, Roche, and UCB; Dr. Curtis JRC receives personal fees from Gilead, Novartis, and Samsung.

Figures

Fig. 1
Fig. 1
Overall participant ranking of PRO selections at study conclusion (m3), weighted summary score (n = 140)
See this image and copyright information in PMC

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