Values for function in rheumatoid arthritis: patients, professionals, and public

Abstract

Background-Although many disability questionnaires measure fact very eYciently, they do not allow for consideration of the relevance of that disability to the patient. Data suggest that professionals misinterpret the relevance of disability for the patient and thus, also, the outcome of treatment. Objectives-Firstly, to examine agreement on levels of importance for the items on a validated disability scale (Health Assessment Questionnaire (HAQ) and Modified HAQ (MHAQ)), within groups of patients with rheumatoid arthritis, health professionals, and controls. Secondly, to see if functional items important to patients are included in the HAQ, and whether the HAQ items are important to patients. Methods-25 patients with RA, 25 rheumatology health professionals, and 25 healthy controls were asked to rate the importance of the HAQ (20 items) and MHAQ (eight domains). Before seeing the HAQ, patients were asked to generate items of function important to them. Results-Only a slight-fair agreement within each group was found for the level of importance of the HAQ and MHAQ, and also within any combination of the groups ( values <0.38). Most of the functional items valued by patients were contained on the HAQ (70%), and no HAQ items were consistently rated as unimportant. Conclusion-Patients, professionals, and healthy controls do not agree on the importance of disabilities. These data support the need to assess the personal impact of disability, as well as disability itself. Individual importance of disability weighted by level of disability is proposed as a model for calculating the personal impact of disability. A new tool to assess the personal impact of disability is being developed.

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

“…In the same manner, quantitative studies have investigated patient priorities among the HAQ items and demonstrated that priorities differed [9] with rather low agreement between persons with RA (weighted κ = 0.241) [8]. Interestingly, no HAQ item seems to be unimportant to all persons with RA [15].…”

Participation in work in early rheumatoid arthritis: a qualitative interview study interpreted in terms of the ICF

“…Although primarily focusing on ability, research using the valued life activities instrument has addressed the relative importance of different activities [39]. Also, researchers relating to the HAQ [23] or the ICF model [26] have discussed whether the perceived importance of activities should be included in assessments. In RA patients, declines in the ability to engage in recreational activities and social interactions are related to the onset of depressive symptoms [39], which may in its turn influence participation in work.…”

“…In addition to individual aspects of functioning such as body functions and an individual's ability to perform certain activities, the ICF model includes participation which is the actual performance of activities in a social context. Regarding the ability of the individual, several assessment instruments have been developed and within a psychometric perspective it has been possible to make selections of items because many abilities correlate fairly well with each other [21,[23][24][25][26]. However, it is more difficult to know how participation in work should be assessed in order to understand and prevent work disability; it is not clear what categories within the ICF activity/participation component that have to be considered when relating participation to e.g.…”

Willingness to pay for improvement of physical function among rheumatoid arthritis patients as measured by Health Assessment Questionnaire

“…The strength of the WTP method is its ability to separately emphasize the different functions in the HAQ. It has been found in earlier studies that health care professionals and RA patients emphasize different issues in the treatment outcomes [11,14]. The significance of, for instance, pain and functional deficits also differ among the patients during the different stages of the disease [15].…”

“…In addition, the function with worst functional capacity in each domain is used in forming the HAQ index, which may distort the actual functional capacity. It has been suggested that a tool parallel to HAQ would be developed, which would measure how the patients value different functions and would provide weighted values for the different functional deficits [11,14]. Monetary value is a concrete way of portraying subjective valuation and could be a starting point for the creation of such a tool.…”