Background/Purpose: We have previously shown that 24% of the patients in a SLE-cohort study (n=84) reported high levels of SLE-related pain (VAS≥40 mm), and also impaired HRQoL, more fatigue, higher levels of symptoms regarding anxiety and depression. In contrast, the patients reporting ≤39 mm on VAS did not differ from the controls regarding patient reported outcomes. We have now investigated the variation in SLE-related pain and its association with 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, and difference in measures (diff) between inclusion and follow-up was calculated.

Results: For the patients with low levels 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 most dimensions of SF-36. 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 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 most dimensions of SF-36.

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 significant deterioration in vitality in SF-36 but no significant changes in the other dimensions of SF-36. All patients with high 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 in SLEDAI and disease damage

Conclusion: For most patients, pain and other patient reported outcomes remained low or improved after seven years. However, a minority of the patients reported remaining high levels of pain after seven years, and were characterized by a heavy symptom burden with widespread pain more than three months, high levels of pain-related problems, impaired health-related quality of life and remaining high levels of fatigue. The results highlight the heterogeneous nature of SLE and stresses the needs of special attention to vulnerable sub-groups of patients with SLE.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/variation-in-sle-related-pain-a-seven-year-follow-up-study/