Background/Purpose: The course of pain in hand osteoarthritis (OA) is often investigated with repeated validated pain questionnaires. However, it is unknown whether these questionnaires reliably reflect patients’ experience of changes in pain. This experience may be influenced by amongst others recall and a shift in the patients’ perception of the pain over time. In order to improve patient outcomes, it is important to ensure that what is measured as a decrease in pain is also experienced as such. Therefore, this study aimed to compare yearly changes on a validated pain questionnaire with the pain course recalled by the patient.

Methods: Four year data of the ongoing HOSTAS (Hand OSTeoArthritis in Secondary care, patients with primary hand OA diagnosed by rheumatologist) cohort were used.

Pain was measured with the Australian/Canadian hand Osteoarthritis index (AUSCAN) pain subscale (range 0-20) annually from baseline. Change in cross-sectional AUSCAN pain scores between years were categorized using the minimal clinical important improvement (MCII, 1.6). Additionally, an anchor question asking participants whether pain had worsened, improved, remained stable or if they had never had pain, compared with the year before, was collected annually. Patients were included in the current analysis if change in AUSCAN pain and the anchor question were available for at least one year.

Changes in annual AUSCAN scores were compared to answers on the anchor questions Cohen’s kappa was calculated. Annual results were comparable between years, so the years were pooled.

Results: Over 4 years, 708 annual intervals (307 patients, mean age 61.0 (SD 8.2), 82% women, mean BMI 27.3 (SD 4.8), baseline AUSCAN pain 9.1 (SD 4.2)) with change in AUSCAN and anchor questions were available. Of 307 patients, 95 provided one interval, 74 provided two, 87 provided three and 51 provided four. In 203 intervals 172 patients reported an increase in AUSCAN pain (of which in 151 intervals patients (74%) indicated their pain had worsened), in 293 intervals 199 patients reported a stable level of pain (of which in 96 intervals (33%) indicated their pain had not changed) and in 212 intervals 176 patients reported a decrease in pain (of which 39 (19%) indicated their pain had improved) (table 1). The most frequent answer was worsening pain. In 422 (60%) of intervals, the anchor question was not in concordance with the AUSCAN pain (Cohen’s kappa of 0.12).

Conclusion: Changes in yearly AUSCAN pain measured differ greatly from the course of pain over the last year perceived by the patient. The patients described deterioration more often than is reflected in the differences between AUSCAN pain measurements. Further investigations to understand pain development, how patients perceive pain development and how best to evaluate it, are warranted.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/worsening-of-pain-as-perceived-by-patients-is-not-reflected-by-an-annual-standardized-questionnaire/