The Prevalence and Severity of Pain in Patients With Systemic Sclerosis

We investigated pain prevalence and severity in systemic sclerosis (SSc) and patient-physician perceptions. This was an internet-based survey that compared perceptions of pain type, location, severity, associated factors between patients with SSc and physicians, and pain treatment prescription patterns in Japan in March 2023. Data from 301 patients and 129 physicians revealed that 96.0% of patients experienced pain compared with 43.4% estimated by physicians. The median (interquartile range) Short-form McGill Pain Questionnaire (SF-MPQ-2) pain score was 47.0 (14.0-88.0). Continuous pain had the highest score (16.0 [3.0-27.0]), followed by neuropathic pain (14.0 [5.0-25.0]), intermittent pain (11.0 [1.0-25.0]), and affective descriptors (5.0 [1.0-14.0]). Pain at joints, fingertips, Raynaud's phenomenon (RP), and skin tightening were most prevalent across multiple pain types. Pain at fingertips and RP-affected locations were more common in limited cutaneous SSc (lcSSc) than in diffuse cutaneous SSc (dcSSc), and skin tightening was more common in dcSSc. Patients with dcSSc had significantly more severe pain than patients with lcSSc. Patients with nausea, insomnia, or diarrhea showed higher SF-MPQ-2 scores. Of the 129 physicians surveyed, 58.9% prescribed painkillers, 48.8% suggested self-care, 42.6% treated skin symptoms, and 16.3% referred patients to pain clinics for further management. Compared to the percentage of patients having pain in each location, physicians tend to be less aware of pain in the muscles, head, and abdomen. Most patients with SSc experience pain, which physicians tended to underestimate. Physicians' awareness of patients' experiences should be improved to provide adequate treatment for pain in SSc. Trial Registration: UMIN000050368.