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  • Review Article
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Patient-reported outcomes in core domain sets for rheumatic diseases

Nature Reviews Rheumatology volume 11, pages 705–712 (2015)Cite this article

Subjects

Key Points

  • Patient-reported outcomes (PROs) are abundant and still accumulating

  • The PROs included in core outcome sets can be regarded as important

  • Most core outcome sets in rheumatology include at least one PRO

  • PRO domains commonly utilized in rheumatology core sets include pain and function, and more-generic concepts captured by the patient global assessment of disease activity and health-related quality of life

  • More research is needed to understand the value of the patient global assessment of disease activity and to identify distinct domains within health-related quality of life

  • Achieving consensus on the choice of generic versus disease-specific PRO instruments in their respective contexts is a key goal

Abstract

Patient-reported outcomes (PROs) are abundant in rheumatology and their numbers continue to increase. But which of the available measures are most important? Core outcome sets—including groups of domains and instruments for measuring them—have been defined for many rheumatic diseases, with the aim that all these outcomes should be measured in every clinical trial. The subgroup of PROs included in these core sets is, therefore, undoubtedly important. This Review summarizes the PROs included in core outcome sets developed for use in clinical trials across a wide range of rheumatic diseases. Three PROs are commonly utilized across the majority of rheumatic conditions: pain, physical functioning and the patient global assessment of disease activity. However, additional research is needed to fully understand the role of the patient global assessment of disease activity, to distinguish specific domains within the broad concept of health-related quality of life, and to work towards consensus on the choice between generic and disease-specific instruments in various contexts.

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Figure 1: Relationships between PROs in rheumatic diseases.

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Authors and Affiliations

  1. Amsterdam Rheumatology and Immunology Center, VU University Medical Centre, PO Box 7057, Amsterdam, 1007, MB, Netherlands

    Lilian H. D. van Tuyl & Maarten Boers

  2. Department of Clinical Epidemiology and Biostatistics, VU University Medical Center, PO Box 7057, Amsterdam, 1007, MB, Netherlands

    Maarten Boers

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Both authors contributed equally to discussions of the article content, writing, review and editing of the manuscript before submission. Data were extracted and summarized by L.H.D.v.T. and discussed and reviewed by M.B.

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Correspondence to Lilian H. D. van Tuyl.

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van Tuyl, L., Boers, M. Patient-reported outcomes in core domain sets for rheumatic diseases. Nat Rev Rheumatol 11, 705–712 (2015). https://doi.org/10.1038/nrrheum.2015.116

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