Background In a previous study we have shown that 24% of patients with SLE in our cohort reported high level of SLE-related pain, ≥40 mm on VAS (0–100 mm).1 These patients with high pain level also reported significantly more fatigue, anxiety and depression and reduced health-related quality of life compared to the SLE patients with low pain level, ≤39 mm on VAS.2
Objectives To investigate the variation in self-reported SLE-related pain and its association with presence of chronic widespread pain (CWP) and patient-related outcomes after seven years of follow-up.
Methods 64 of 84 patients agreed to participate in the 7-year follow-up and answered questionnaires on pain (VAS/mm), fatigue (MAF), HRQoL (SF-36), anxiety and depression (HADS) and, in case of remaining pain > three months, marked painful body regions on a pain-drawing. Disease activity and damage (SLAM, SLEDAI, SLICC) were also captured. Nonparametric statistics were used to compare the different groups. Difference in measures (diff) between inclusion and follow-up was calculated.
Results For the patients with low degree of SLE-related pain the previous week (≤39 mm on VAS) at inclusion, n=50, there were no significant difference at 7 years follow-up in pain, fatigue, anxiety, depression and all dimensions of SF-36, except for deterioration in physical function median diff (IQR) 0 (-10 to 5), p=0.024. Of these patients with low level of pain, 26% indicated chronic widespread pain on the pain drawing.
Among patients with high degree of pain (≥40 mm on VAS) at inclusion, n=14, half of the patients reported significantly decreased pain, diff (IQR) 45 (35 to 65), p=0.021, fatigue, 8 (8 to 17), p=0.018, anxiety, 4 (1 to 4), p=0.035 and depression, 4 (2 to 5), p=0.018 and improvements in all dimensions of SF-36 except for role emotional and social function at follow-up, p<0.05.
However, half of the patients with high degree of pain at inclusion reported no significant changes at follow up regarding pain, median diff (IQR) -13 (-20 to 28), fatigue, 5 (-0.3 to 6), anxiety, 2 (-1 to 3) and depression, 0 (-3 to 2). These patients reported significantly deterioration in vitality in SF-36, diff (IQR) 20 (15 to 35), p=0.0018 but no significant changes in the other dimensions of SF-36. All patients with high levels of remaining pain indicated chronic widespread pain on the pain drawing. These patients with remaining pain had significantly higher SLAM at follow-up compared to the patients with decreased pain at follow-up, p=0.017 and the patients with low levels of pain at inclusion, p=0.006. No significant differences were found regarding SLEDAI and disease damage.
Conclusions Self-reported level of disease-related pain remain low in most patients and in some patients also significantly reduced. However, half of the patients with high level of pain at inclusion still experienced high level of pain and pain-related problems including widespread pain after 7 years of follow-up. These results suggest a transition from SLE-related pain to chronic widespread pain, which requires different pain management.
Waldheim,E.,et al.(2013).Lupus 22:136–143.
Waldheim,E.,et al.(2013).Lupus 22:1118–1127.
Disclosure of Interest None declared