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Patient-Reported Outcomes in the Treatment of Rheumatic Diseases

Patient-reported outcomes (PROs) matter broadly and rheumatologists increasingly are seeing the benefits of utilizing PROs to guid and personalize care.

Consider fibromyalgia – in the past, rheumatologists made use of a tender point exam and the Beck Depression Inventory (BDI).  Yet new scales, including catastrophic thinking, stress, and resilience, have become highly relevant  in patient evaluation.
Certain rheumatic diseases, such as lupus, disproportionately affect women and minorities, who often feel unheard. PROs are an essential tool to ensure that rheumatologists can discern the issues voiced by their patients and support their self-evaluation. 

In rheumatology, a clinician juggles numerous disparate data inputs, including clinical examinations, labs, imaging and more to ascertain a patient’s condition, and it tends to be more subjective than other disease states. The patient’s perspective can be a meaningful clarifier as a part of the management plan.

Rheumatic diseases, especially in lupus and fibromyalgia, are often quite enigmatic and heterogenous. By adding a patient’s perspective, a rheumatologist can consider their goals and aspirations when it comes to their hyper specific wellness and lifestyle.

Now almost twenty years ago, NIH innovated in this area with the Patient-Reported Outcomes Measurement Information System (PROMIS), a program that created new models for how clinical research information is collected, used, and reported. PROMIS addressed a need in the clinical research community for a rigorously tested patient reported outcome (PRO) measurement tool, across over three hundred (300) variables. 

Some patients utilize spreadsheets to systematically track symptoms, habits, stress levels, and diet to discover any patterns and identify personal triggers. Recent studies from CreakyJoints and the Global Healthy Living Foundation presented at the American College of Rheumatology (ACR) Convergence 2022, highlight the benefit of taking PROs into consideration in clinical care and research.