The use of routinely collected patient-reported outcome measures in rheumatoid arthritis

https://doi.org/10.1016/j.semarthrit.2018.03.006Get rights and content

Abstract

This study systematically reviewed commonly used patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA), routinely collected in clinical practice, and evaluated objectives of their use. An additional survey conducted among identified RA registries provided additional information about collection of PROMs.

Medline Ovid and Embase were searched for observational studies using data of RA registries/cohorts, published between 2011 and 2016. The search combined a validated search algorithm for PROMs and RA. Study characteristics, objective, registry, country, type of PROMs collected, and time interval of collection were systematically recorded. The survey asked about PROMs collected by the registries, timing, response rates, and barriers to collection.

Ninety-eight articles from 15 countries were identified making use of 37 registries and large cohorts. Thirty-three PROMs were collected routinely, with VAS, EQ-5d and HAQ being the most used tools. Health domains reported the most were functional assessment, pain and patient global assessment. Despite the wide variety of collected PROMs, foci of the articles were similar and reported results narrow.

This review suggests rethinking the role of PROMs in rheumatology research to use this information as broadly as possible, including evaluation of treatments, economic analyses, and decision-making based on patients’ experiences at system, provider, and physician level.

Introduction

Rheumatoid arthritis (RA) is the most frequent type of inflammatory arthritis, affecting 1–2% of the world population [1]. It is characterized by progressive joint damage, comorbidities, diminished health-related quality of life (HRQoL) and premature mortality [2], [3]. The resulting physical disability over a long period of time exposes people to significant financial burden including direct medical costs, e.g., due to expensive drugs and joint replacement surgery, and indirect costs due to sick leave [4]. Severity of disease and resulting disability are evaluated by using a combination of assessments, including pathophysiological manifestations, such as laboratory or imaging, clinician-reported outcome measures, and patient-reported outcome measures (PROMs). PROMs are questionnaires that patients complete to provide information about their health status or aspects of HRQoL. PROMs are now considered part of the core set of measures that are recommended in order to determine activity of the disease and response to treatment [5]. The latter is particularly relevant as PROMs provide information that may not be considered especially important by physicians, e.g., sleeping difficulties and fatigue [6], [7]. Their use reflects a desire for assessment of the effectiveness, monitoring and accountability of health care provision, and reflects the need to place patients’ perspectives at the center of health care delivery.

Prior systematic reviews have focused on the type of PROMs reported in randomized controlled trials (RCTs) [8], [9]. These reviews describe that, although the types of PROMs collected have been consistent with recent RA core set recommendations, some health domains that are important to patients such as psychological status and coping, are rarely collected. Increasingly, PROMs are also being collected in RA registries and RA cohorts, which constitute excellent sources of information for clinical rheumatology [10]. RA registries and cohorts generally involve thousands of unselected patients, and are therefore considered to be more representative of real-world patient populations than clinical trials [11]. Furthermore, data from registries and cohorts provide valuable information on real-world treatment choices and outcomes, that reflect the patients’ perspective [10]. This makes large scale collection of PROMs an ideal data source for answering clinical research questions, but also policy-oriented research, including economic evaluation and quality of clinical care provided at different levels of the health care system [12]. Specifically, PROMs data may be used to support improved decision making and waste reduction throughout the care pathway, from initiation of therapy or choice of treatment (e.g., PROMs to support shared decision making) and ongoing clinical management (e.g., PROMs to guide changes in treatment), to reviewing clinical practice in the search for improved care delivery (e.g., PROMs as part of ongoing quality review and improvement). It is unclear whether all these areas are being addressed by the registries currently collecting these measures.

To our knowledge, no review has given an overview of the type of PROMs routinely collected in clinical practice of RA, or how these have been used. Therefore, this review aimed to identify commonly used PROMs for RA in adults routinely collected in clinical practice, and to evaluate the objectives of collecting these measures to understand the practical barriers of use of PROMs.

Section snippets

Methods

A systematic literature review was conducted to identify current registries, databases and cohorts (hereafter referred to collectively as registries) of RA patients. Investigators involved with these registries were invited to participate in a follow-up survey to: (1) investigate if PROMs were collected that were not published and (2) collect information on perceived barriers to the routine collection of PROMs.

Search results

3665 publications were identified from Medline Ovid and Embase, of which 118 (3%) were identified as duplicates (Fig. 1). A total of 3547 articles were screened by title and abstract, of which 475 (13%) were retained. Another 212 articles were excluded at the full-text screening stage due to not including PROMs (n = 91), using study designs other than observational, longitudinal or cross-sectional (n = 78), not using registry data (n = 43). 98 articles (3% of those identified) therefore met

Discussion

This systematic review provides an overview of the routine collection of PROMs in RA during the 5 years reviewed, using data from articles reporting results from observational registries. We supplemented this information with a survey of investigators of these registries. Our results show the routine collection of PROMs for RA patients is widespread, with a total of 98 studies published between 2011 and 2016, using data from 37 registries spread across 15 different countries.

We found

Conclusion

PROMs are being collected widely in rheumatology registries, however, there seems to be a discrepancy between the extent of collected PROMs and evaluated and presented PROMs in published research. PROMs data, interpreted and used appropriately, can bring improvement by addressing several aspects of waste in the current system. Rethinking the role of PROMs in rheumatology research is required and further work involving a greater variety of PROMs is needed to use this information as broadly as

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