The History of Patient-Reported Outcomes in Rheumatology

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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

The beginning of patient-reported outcomes in rheumatic diseases

In the February 1980 issue of Arthritis and Rheumatism, 2 seminal articles were published back to back.8, 9 Fries and colleagues8 published, Measurement of Patient Outcome in Arthritis, and Meenan and colleagues9 published Measuring Health Status in Arthritis: The Arthritis Impact Measurement Scales. Both articles described multidimensional self-report questionnaires designed to assess outcomes in patients with rheumatic disease. The article by Fries and colleagues8 presented a structure for

Measures available for assessing patient-reported outcomes in rheumatic disease

After the HAQ and AIMS established the groundwork for patient-reported outcome measurement in rheumatic diseases, the field expanded exponentially. In addition to the derivations, updates, enhancements, and modifications to the HAQ and AIMS, many measures assessing a range of domains important to patients with rheumatic diseases were developed. There were also more scales targeted to specific rheumatic disease diagnoses. In 1992, a special issue of Arthritis Care and Research (AC&R) on health

Refinements of the patient-reported outcome measurement approach

The scales assessing patient-reported outcomes in rheumatology from the early 1980s until around 2005 were developed and tested using classic test theory (CTT).61 Instruments developed with CTT require administering all items of the scale, even though only some of the items may be appropriate for that particular patient’s underlying illness experience. For example, some items are too high for individuals who are severely disabled (eg, can you walk a mile for a person in a wheel chair) and some

Patient-reported outcome measures in routine rheumatologic clinical care and clinical trials

The initial use of patient-reported outcome measures was in the research arena, including clinical trials. Only a few rheumatologists were using patient questionnaires in routine clinical care in the 1980s and early 1990s. The 2 individuals who not only made substantial contributions to the development of patient self-reported questionnaires and their use in research but also led the charge to incorporate these measures into routine rheumatologic clinical care are Theodore Pincus, MD, and

Summary

Rheumatic diseases are chronic conditions in which patients experience functional declines; symptoms of pain, fatigue, and stiffness; challenges in work productivity and social roles; and psychosocial issues and distress. All of these aspects of disease are best captured through patient self-report. For the past 35 years, rheumatology has led the way in chronic diseases for the development, evaluation, and use of patient-reported outcome measures in research, routine clinical care, and clinical

Acknowledgments

The author thanks Teresa Brady, PhD, for sharing the videos from her Association of Rheumatology Health Professionals’ Distinguished Lecture.

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