Background HAQ is used to monitor physical disability in patients with Rheumatoid arthritis (RA). At our department patients are planned to answer HAQ at every visit. The suitability for use in connection with ordinary clinical controls are questioned (1, 2) and furthermore we have the impression that the patients fill in the HAQ questionnaire because the staff wants it, and not because it make sense to the patients themselves.
Objectives Evaluation of the HAQ from the patient perspective
Methods A survey where all patients with RA who visited the outpatient clinic over a period of 3 weeks were invited to participate. Patients were asked to fill in a questionnaire to evaluate each question (20) in the HAQ on a scale from 1 – 10, 1 = no meaning and 10 = most meaningful. Values less or equal to five were evaluated as “no meaning”. Furthermore a literature review was done, afterwards a Critical Appraisal Skills programme (CASP) was performed on publications found
Results 100 patients were asked to participate, in total 67 questionnaires were returned, twelve patients were excluded because of incomplete answers, twenty-one did not return the questionnaires or did not want to participate. Depending on which of the 20 questions, different fractions of the patients did not find any meaning in the questions: 18.6% (are you able to shampoo and wash your hair?) up to 40.4% (are you able to use the bathtub?)
In the literature (3, 4) we found several themes of importance for everyday life with RA seen from the patients' perspective. Pain and impaired physical performance is of great significance for patients living with rheumatoid arthritis. It affects patients both physically, mentally and socially, as it may be necessary to cut back on social activities, to ask for help for ordinary everyday chores, changing or dropping work etc. This has implications for the role of the patient in the family. Powerlessness, frustration and uncertainty about the future affect the mood in form of anger and depressive thoughts.
Overall, it affects the patients' self-image and the patients' independence may be lost.
Conclusions HAQ questionnaire is relevant in the term of defining the areas in everyday life, where the patients have problems. But the questionnaire does not contribute to elucidate the implications for the patient, which probably is the reason why many patients do not find the meaning with the questions. To evaluate the everyday living with and treatment of arthritis embedding the patient values, patient involvement in designing questionnaires is vital
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Disclosure of Interest None declared