Page 163 - THE EVOLUTION OF EARLY ARTHRITIS AND CARDIOVASCULAR RISK Samina A. Turk

DO PATIENTS WITH RHEUMATOID ARTHRITIS IN REMISSION FEEL NORMAL AGAIN?
validate aspects of the scale in the context of RA remission. A limitation of this study is its size (47 patients only). Most likely, selection also occurred in the included patients, increasing the proportion of patients experiencing remission. However, as remission is still relatively infrequent, such a selection is actually favourable in this study of normality in the context of remission, as it creates more balanced groups, and does not influence the scores of the normality scales in either remission or non-remission states.
To our knowledge, no other instrument is available that measures the feeling of normality, specifically in patients with RA. More or less simultaneously to the development of the normality scale, O’Neal et al. developed a normalization assessment measure for rheumatic conditions containing 20 questions (15). However, this assessment includes, but is not limited to, RA since it is also developed in patients with lupus, osteoarthritis, and fibromyalgia. A comparison of the scales developed by Sanderson and O’Neal and their relation to disease activity measures would be of interest.
The discordance between patient perceived remission and Boolean remission was picked up by the normality score, that appeared more sensitive to occurrence of the former, at least in the first 13 weeks. These results confirm our impression that patient perception of remission is not (completely) the same as the clinician’s, and that at least part of this difference lies in information captured by the normality scale.
The normality scale was originally designed in Bristol and contains 7 items (9). All items
are carefully formulated and selected out of interview data with patients about living
with RA. In the analyses of separate items, an outlier occurred in the answers of one of
the items: more than half of the patients answered ‘strongly agree’ to item 6 “When I
am well, my life is relatively normal”. This is in contrast to the answers that were given
to all other items, where is more diversity in the number of patients that chose for a
specific answer. According to the formulation of the question, this might not be very surprising, as a RA patient that is feeling well does only have a few or maybe even no complaints like pain. The large improvements in the scores for item 1 (“On most days,
I don’t think about my arthritis”) are also notable, given that all patients in the trial are 8 still taking anti-rheumatic drugs on a daily basis. This suggests they no longer think
about their RA every time they take a pill, pointing to adaptation. This is in accordance with the definition of normality of Sanderson et al: ‘the person conceptualises the illness as normal, which involves incorporating the illness more fully into a person’s identity and public self through a redefinition of values and beliefs’ (9). In other words, it may be that patients adjust their expectations and values, they get used to a new way of life and they adapt to ‘a new normal situation’. However, when the normality anchor shifts, patients will feel more normal when the disease improves, even when the problems are not completely gone. This is a problem when there are still unresolved problems that should be addressed by the therapy.
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