Page 162 - THE EVOLUTION OF EARLY ARTHRITIS AND CARDIOVASCULAR RISK Samina A. Turk

CHAPTER 8
Of the separate normality items of the normality scale, more than half of the patients answered item 6 with ‘strongly agree’ to the statement “When I am well, my life is relatively normal” (24, 26, and 24 patients respectively at baseline, after 13 weeks, and after 26 weeks). This is also the item with the highest item score at all time points, followed by item 3 “I socialise as much as someone without arthritis”. The other items have a wider range in their scores. Furthermore, item 1 (“On most days, I don’t think about my arthritis”) show large improvements in the scores: at baseline, most patients disagree with this sentence (17 patients strongly disagree and 11 patients partially disagree), while after 26 weeks most patients agree with the sentence (15 patients strongly agree and 13 patients partially agree).
Of the 65 eligible patients, 18 patients had incomplete data and had to be excluded from these analyses. These patients did not differ significantly from those included with regards to gender, age, or disease activity at baseline. However, patients with incomplete data were less likely to experience remission: 18% and 7% were in remission at week 13 and week 26 respectively, compared to 28% and 29% in the included patients (significant at 26 weeks: p=0.03).
DISCUSSION
This study demonstrates that the perception of normality as measured by the normality scale is sensitive to change in the context of the start of treatment in early RA in a treat-to-target regime aiming at clinical remission, and that it discriminates between patients in and not in remission. Of note is that the responsivity of this fully patient- reported outcome is similar to that of the DAS28, widely regarded as one of the most sensitive indices of disease activity. Finally, occurrence of patient-perceived remission was discordant with Boolean remission, preponderantly in the direction of Boolean being more strict than the patient perception.
Research on the perception of normality in patients with RA is limited. Almén et al. studied perceptions of RA patients relating particular topics. One of these topics was ‘normal life’ that they expressed as: regaining full health, living a normal live, not to be regarded as differing from ordinary people, not be seen as different because of disability, feeling no limitations, managing the household, and normal social functioning, in sum “...to be able to live the life I had before” (14). The chronic, progressive nature of RA likely complicates a comparison of life with RA to that before RA; nevertheless, in our study of early RA patients 9% indicated their life had returned to normal as it was before the start of RA, scoring the maximum score on each item of the normality scale after 26 weeks of therapy.
Research on normality in RA is limited. The normality scale used in this study was developed as part of a doctoral thesis (9), but has to date not been published in a scientific journal, limiting its exposure and dissemination. This is the first study to
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