Motegi Sei-Ichiro, Uchida-Yamada Mona, Shima Yoshihito, Shimada Taku, Ishii Haruka, Ohya Yoshito, Kanai Yasumasa
Department of Dermatology, Gunma University Graduate School of Medicine, Maebashi, Japan.
Medical Affairs, Kyowa Kirin Co., Ltd., Tokyo, Japan.
J Dermatol. 2025 Sep;52(9):1382-1394. doi: 10.1111/1346-8138.17843. Epub 2025 Jul 3.
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.
我们调查了系统性硬化症（SSc）患者的疼痛患病率和严重程度以及患者与医生的认知情况。这是一项基于互联网的调查，比较了2023年3月日本SSc患者与医生对疼痛类型、部位、严重程度、相关因素的认知以及疼痛治疗处方模式。301名患者和129名医生的数据显示，96.0%的患者经历过疼痛，而医生估计的比例为43.4%。简短麦吉尔疼痛问卷（SF-MPQ-2）疼痛评分的中位数（四分位间距）为47.0（14.0 - 88.0）。持续性疼痛得分最高（16.0 [3.0 - 27.0]），其次是神经性疼痛（14.0 [5.0 - 25.0]）、间歇性疼痛（11.0 [1.0 - 25.0]）和情感描述项（5.0 [1.0 - 14.0]）。在多种疼痛类型中，关节、指尖、雷诺现象（RP）和皮肤紧绷处的疼痛最为普遍。指尖和RP受累部位的疼痛在局限性皮肤型SSc（lcSSc）中比弥漫性皮肤型SSc（dcSSc）中更常见，而皮肤紧绷在dcSSc中更常见。dcSSc患者的疼痛明显比lcSSc患者更严重。有恶心、失眠或腹泻的患者SF-MPQ-2评分更高。在接受调查的129名医生中，58.9%开了止痛药，48.8%建议自我护理，42.6%治疗皮肤症状，16.3%将患者转诊至疼痛诊所进行进一步治疗。与每个部位疼痛患者的比例相比，医生往往对肌肉、头部和腹部的疼痛认知较少。大多数SSc患者经历疼痛，而医生往往低估了这一点。应提高医生对患者经历的认知，以便为SSc患者的疼痛提供充分治疗。试验注册号：UMIN000050368。
