Study Reveals the Symptoms That Patients With RMDs Prioritize

Patient-reported outcomes (PRO) are frequently used to track patient symptoms and quality of life, as well as the disease activity, progression, and effectiveness of treatment. ArthritisPower—a patient-based research group with support from the Global Healthy Living Foundation and Patient-Centered Outcomes Research Institute (PCORI)—recently conducted a PRO study to determine which patients with rheumatic and musculoskeletal diseases (RMD) consider the most important aspects in tracking and managing diseases.

Using the ArthritisPower app, eligible adult patients within ArthritisPower’s US registry were able to choose between 3 and 10 symptoms they felt were the most important for tracking their respective conditions. These patients represented a variety of conditions, including ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid arthritis, and systemic lupus erythematosus.

Tracking measures were ranked and weighted based on the participant’s ratings, which were determined from least to most important on a scale of 1 to 5, producing a total score for each over the course of 3 months. Every 28 days of the study, participants were given the option to replace their previously selected measures and add new symptoms of importance to track, or continue tracking the same measures the following month. By month 3, participants typically chose to track 5 measures: pain intensity, pain interference, duration of morning stiffness, fatigue, and physical function.

The app helped patients make informed decisions by providing clickable resources that offer more information, including what the measures mean and other symptoms they would like to track that were not included in the study.

“These findings provide insights into the symptoms that rheumatology patients may find most important and will be useful to inform the design of future patient-centric clinical trials, real-world evidence generation, and remote patient monitoring as a component of virtual health care,” the authors concluded.

-Angelique Platas

Reference:

Nowell WB, Gavigan K, Kannowski CL et al. Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower. Arthritis Res The. Published online February 5, 2021. doi.org/10.1186/s13075-021-02430-0