Page 157 - THE EVOLUTION OF EARLY ARTHRITIS AND CARDIOVASCULAR RISK Samina A. Turk
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DO PATIENTS WITH RHEUMATOID ARTHRITIS IN REMISSION FEEL NORMAL AGAIN?
INTRODUCTION
Rheumatoid arthritis (RA) is a chronic illness characterized by inflammation of the joints that strongly impacts quality of life. However, improved treatment strategies now more frequently result in remission (1), so that ‘returning back to normal’ might be a realistic goal for some patients.
According to the American College of Rheumatology and the European League Against Rheumatism (ACR/EULAR) definition, remission in RA is achieved when tender joint count, swollen joint count, patient global assessment of disease activity (PtGA) and C-reactive protein (CRP) level are all ≤1, or when the simple sum of the tender joint count, swollen joint count, PtGA, physician global assessment (PhGA) and CRP level is ≤3.3 (2). The definition contains one patient reported outcome, namely the PtGA, formulated as “Considering all of the ways your arthritis has affected you, how do you feel your arthritis is today?” with the anchors very well and very poor (2). Although some have suggested that the PtGA should be removed from the remission definition for the sake of diagnostic accuracy (3), others, especially patients and clinicians have suggested that with only one patient-reported outcome the definition lacks information from the patients’ perspective on remission (4).
Qualitative research from our group identified three major themes of patient perceived remission: 1) reduction or absence of symptoms, 2) reduction of impact, 3) return to perceived normality (5). This return to perceived normality was either referred to as a return to the ‘old’ normal life, as well as a ‘new’ normal situation referring to work, family role and perception of others (5). This theme has also emerged in other studies, where maintaining a normal life, returning to normality, or perceptions of normality were identified as important treatment outcomes to RA patients (6-8).
While ‘returning back to normal’ was identified by patients as one of the three
most important themes of patient perceived remission, ‘normality’ is a complicated
concept and a consensus definition is not documented in literature. Normality is often 8 equated to quality of life or well-being, but it might be more than that. Sanderson et al
defined normality as ‘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 2009, a ‘normality scale’ was developed to
assess the perception of normality in RA patients (9). This study aims to investigate
the relationship between patient perceived concepts of normality and remission, and
the ability of the normality scale to discriminate between remission and non-remission
states.
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