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Measuring Outcomes in Rheumatoid Arthritis. Edited by A F Long and D L Scott. (Pp 104; £10.50). London: Royal College of Physicians of London, 1996. ISBN 1-86016-032-8.
In the case of a chronic, progressive disease such as rheumatoid arthritis (RA), no single desired outcome or outcome measure is universally appropriate. Possible desired outcomes may differ significantly with regard to the disease phase or the perspective applied (patient’s, practitioner’s or purchaser’s). This book on the measurement of outcomes in RA clearly shows how multidimensional the phenomenon is. It arouses many interesting questions, one of the most important being how to apply the measures of functional disability mainly assessed in research contexts to clinical practice?
The book sheds light on the consequences of the disease in terms of the WHO classification—that is, by making a distinction between impairment, disability, and handicap. It can be used as a ‘minimanual’ because it is well referenced and also provides information on methological aspects and data collection and even advice on how to search literature on this topic, without forgetting the patient’s pespective. The book itself is the outcome of a one day conference in Leeds in 1993. Against that background, it is not surprising that there is some overlapping information and repetition, which, however, will be eliminated in the future editions.
The chapter ‘Exploring outcomes’ clarifies in an interesting manner the wide range of issues on the outcome agenda. What are the desired outcomes, which interventions produce these outcomes, do they work within routine practice, whose outcomes should have priority, etc? I especially appreciated the chapter ‘A methological perspective’. It demonstrates the need to explore how the most common health status measures (Health Assessment Questionnaire and Arthritis Impact Measurement Scales) tested and developed in clinical trials would fare in routine clinical practice—in assessing the effectiveness of different patterns of care and health gain provided by routine care or in responding to patient defined views of problems and outcome.
The chapter ‘Measuring impairment’, however, seemed to be focused too much on x ray methods, while range of motion tests, such as the Keitel function test, were completely ignored. There is an active search for laboratory measures of outcome in RA beyond the erythrocyte sedimentation rate and C reactive protein, such as biochemical markers of bone and cartilage turnover. I would have appreciated a more profound presentation of these measures under the heading ‘surrogate biochemical markers’. The same comment goes for the testing for specific HLA-DRB1 and DQ alleles (the shared epitope), especially in view of the ongoing discussion of their role as outcome measures in RA. The authors only discussed HLA-DR4 in the chapter ‘An overview of studies of disease outcome’.
The chapter ‘Measuring handicap’ shows that this area is still in its infancy. The reader becomes convinced that measurement of patient perceived handicap provides important clinical and social information, which is missing from the existing outcome measures. Though most of the available measures of handicap are time consuming and suitable for research rather than clinical purposes, the chapter represents some newer tests that are quick and easy to complete. Hopefully, this important dimension in outcome measurement is coming into wider use in clinical practice.
The authors have made an important opening move, which will probably provoke discussion about the different perspectives on outcome in RA held by researchers, patients, and clinicians. The items they suggest for debate are: What is the purpose of collecting data on outcome in clinical practice? How should the clinician and the patient interpret the data? Which measures should be given priority?
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