Abstract
Background In recently diagnosed axial spondyloarthritis (axSpA), illness perceptions are important in the relationship between back pain and Health-Related Quality of Life (HRQoL) or work productivity loss (WPL). 1 Coping did not have an additional impact on this relationship, but was associated with HRQoL. Therefore, health outcomes might be improved by influencing illness perceptions and possibly coping. With respect to disease management, it is important to know if illness perceptions and coping remain stable over time. However hardly any information is available, especially for early axSpA, as the few studies that have been conducted mostly had a cross-sectional design and investigated patients with longstanding radiographic axSpA. Objectives To investigate if illness perceptions and coping strategies change in the first 2 years after diagnosis of axSpA. Methods Patients diagnosed with axSpA and ≥1 follow-up visit (1 year and/or 2 years) in the SPACE cohort were included in the analysis. Mixed linear models were used to test if illness perceptions (measured by the Revised Illness Perception Questionnaire (IPQ-R, scale 1-5)), coping (Coping with Rheumatic Stressors (CORS, scale 1-4)), back pain (scale 0-10), HRQoL (physical (PCS) and mental component summary (MCS), scale 0-100, of the 36-item Short-Form Health Survey (SF-36)), WPL and activity impairment (Work Productivity and Activity Impairment (WPAI, range 0-100%)) changed over time. Results were stratified for gender and age when the interaction term was statistically significant (p Results In total, 150 axSpA patients (mean age 30.4 years, 51% female, 65% HLA-B27+) were analysed. Baseline mean back pain (SD) was 4.0 (2.5), PCS was 28.8 (14.0), MCS was 47.8 (12.4), WPL was 34.1% (29.8) and activity impairment was 38.7% (27.9). Illness perceptions and coping strategies showed minimal changes over time (Table 1, 2). Over two years patients remained having negative illness perceptions (which were important in the association between back pain and health outcomes in the previous study). For example, over 2 years patients had strong beliefs in severe consequences (‘consequences’), had still negative emotions towards their disease (‘emotional representation’) and had strong beliefs in chance (‘chance’) as a cause for axSpA. Over two years, back pain (mean change ± SD is -1.5 ± 2.2) and activity impairment (-14.4% ± 27.2) decreased, PCS (11.1 ± 13.3) and WPL (-15.3% ± 28.7) improved statistically significantly, but MCS did not change (0.7 ± 13.9). Conclusion Despite clear improvements in back pain and health outcomes over 2 years, illness perceptions experienced and coping strategies applied by the patients showed little change in recently diagnosed axSpA patients. Further research is recommended why despite improved outcomes illness perceptions do not change, to investigate the impact of these unchanged illness perceptions and coping strategies on health outcomes and how these negative perceptions can be improved.
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