Call for action: how to improve use of patient-reported outcomes to guide clinical decision making in rheumatoid arthritis

Abstract

Current guidelines for the management of rheumatoid arthritis (RA) recommend early treatment and a treat-to-target goal of remission or low disease activity. Over the past decade, this approach has been extremely successful in reducing disease activity and joint damage in patients with RA. At the same time, however, overall patient perception of well-being appears to have decreased with respect to outcome measures considered important by patients themselves, such as pain, fatigue, physical function and quality of life. The timely and effective use of patient-reported outcomes (PROs) could encourage physicians to focus more on the impact of RA on patients and how patients are feeling. This in turn would facilitate shared decision making between patients and physicians, ultimately leading to a more patient-centered approach and improved patient care. Indeed, PROs provide information about individual patients that complements information provided by physical assessment and composite scores, and can also be used to guide patient care, such as determining whether a clinic visit is needed or whether treatment modifications are necessary. This is particularly important for patients who do not achieve the aspirational target of remission or low disease activity with pharmacological treatment. A number of validated PRO questionnaires are available, but how and which PROs should be incorporated into rheumatology clinical practice as part of the decision-making process is still controversial. Combining PROs with technology, such as computer adaptive tests, electronic PRO systems, web-based platforms and patient dashboards, could further aid PRO integration into daily rheumatology clinical practice.

Outcomes and Strategies to Support a Treat-to-target Approach in Inflammatory Bowel Disease: A Systematic Review

“…92,93 For example, treating to a target of clinical remission or low disease activity has been extremely successful in reducing joint damage in patients with rheumatoid arthritis. 94 Treatment targets are typically specific quantitative measures, based on comprehensive, evidence-based, generally accepted target values. 14 Publication of the STRIDE recommendations for selecting treatment targets in CD and UC represents a first step towards a T2T approach in IBD management.…”

Shared decision‐making in people with chronic disease: Integrating the biological, social and lived experiences is a key responsibility of nurses

“…Paradoxically, these unprecedented pharmacological developments are not always mirrored by patients' overall perception of wellbeing (Fautrel et al, 2018;Gruffydd-Jones, 2019;Taylor et al, 2016;Torres-González et al, 2014). Control of the disease process does not necessarily mean control of the impact that the disease (and its treatment) has on patients' lives.…”

“…The combination of PROMs with innovative technologies, such as mobile devices, apps and computer-adaptive tests, creates new opportunities for patients and health professionals. However, further research and consensus are needed (Basch, Barbera, Kerrigan, & Velikova, 2018;Fautrel et al, 2018;Porter et al, 2016).…”

“…When making decisions on their own health, patients value not only clinical/biological outcomes, but also, and often to a greater extent, the way they feel the disease affects their life. The trend to capture patient perspectives using patient‐reported outcome measures (PROMs), as an attempt to serve person‐centred care, is still growing (Fautrel et al, ; Harding, Wait, & Scrutton, ). However, when it comes to treatment decisions in real‐world practice, the primary target is defined by the physician in charge and is often limited to the biological process of the disease.…”

Fatigue in early, intensively treated and tight-controlled rheumatoid arthritis patients is frequent and persistent: a prospective study

“…Despite these effective strategies and reaching remission of disease activity, patients with rheumatoid arthritis (RA) still may experience a burden of the diseases like pain and fatigue [3]. From 40 to 80% of the RA patients are fatigued, which may affect their lives [4–6].…”