The History of Patient-Reported Outcomes in Rheumatology

The rheumatology community began incorporating patient-reported outcomes in the early 1980s, helping shift the care of chronic diseases from a narrower biomedical model to a broader biopsychosocial model of health. Early efforts were focused primarily in clinical trials and clinical research, but over the last decade there has been increasing use in routine rheumatology clinical care. More than 250 valid and reliable scales to assess domains of importance to patients with rheumatic conditions have been developed. The approach to measurement continues to be refined. Rheumatology has much to be proud of in contributions to the important field of patient-reported outcomes.

Key points

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Historically, rheumatology researchers and clinicians have been at the forefront of patient-reported outcomes assessment and changing the paradigm from a narrower biomedical model to a broader biopsychosocial model of health.
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The Health Assessment Questionnaire and the Arthritis Impact Measurement Scales were published in 1980 as the foundation patient-reported outcome scales in rheumatology.
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More than 250 instruments are available for measuring outcomes of importance to patients with rheumatic diseases, including functional incapacity, disability, pain, fatigue, depression, anxiety, perceived helplessness, self-efficacy, sleep disruptions, work limitations, and social role participation.
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The approach for patient-reported outcome measurement is moving from classic test theory to modern psychometric theory and the Patient Reported Outcome Measurement Information System offers opportunities for rheumatology.
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The initial use of patient-reported outcomes measures in rheumatology was in the research arena, but strong efforts were made over the last 15 to 20 years to promote their value in routine clinical care to assess, monitor, and predict outcomes, such as work disability, costs, and mortality and assess new therapies in clinical trials.