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首页> 外文期刊>Orphanet journal of rare diseases >Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex
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Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex

机译：局限性表皮松解症患者的疼痛和生活质量评估

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BackgroundA localized form of epidermolysis bullosa simplex (EBS-l) is considered one of the mildest forms of epidermolysis bullosa (EB), with blisters limited to the palms and soles. However, these lesions can be very painful. The aim of the study was to characterize pain in patients with EBS-l and evaluate its impact on quality of life (QoL). Patients were contacted via the Research Group of the French Society of Pediatric Dermatology and the association of EB patients (DEBRA France). One investigator used a standardized questionnaire that included validated scales for pain and QoL for a telephone interview. ResultsWe included 57 patients (27 children). All patients had pain: the mean pain on a 10-mm visual analog scale was >5 for most adults (90%) and children ≥8?years old (94%) when blisters were present and for most adults (73%) and about half of the children ≥ age 8 (53%) during dressing changes. Similar results were found for younger patients. Overall, 75% of patients had neuropathic pain; for 55% of children and 73% of adults, the pain had a moderate to severe impact on QOL. Only seven patients used premedication before changing dressings and seven regularly used oral treatment for chronic pain. A total of 21% and 23% of patients used non-steroidal anti-inflammatory drugs and grade 2 analgesics, respectively. These treatments were not effective for neuropathic pain. Six patients tried 5% lidocaine plasters on their feet, with good efficacy. ConclusionsEBS-l patients have frequent and severe pain with neuropathic characteristics. This pain is undertreated and affects QoL.
机译：背景技术局部形式的大疱表皮松解术（EBS-1）被认为是最温和的大疱表皮松解术（EB）形式之一，水疱仅限于手掌和脚底。但是，这些病变可能非常痛苦。该研究的目的是表征EBS-1患者的疼痛并评估其对生活质量（QoL）的影响。通过法国儿科皮肤病学会研究小组和EB患者协会（法国DEBRA）进行了联系。一位研究人员使用了标准化的问卷，其中包括经验证的疼痛量表和生活质量量表，用于电话采访。结果我们纳入了57例患者（27名儿童）。所有患者均有疼痛：当出现水泡时，对于大多数成年人（90％）和≥8岁的儿童（94％），在10毫米视觉模拟量表上的平均疼痛> 5，而对于大多数成年人（73％）和换药期间，约有一半的8岁以上儿童（53％）。对于年轻患者也发现了类似的结果。总体而言，有75％的患者患有神经性疼痛。对于55％的儿童和73％的成年人，疼痛对QOL有中等至严重的影响。只有七名患者在换药之前进行了预用药，而七名患者则定期口服治疗慢性疼痛。分别有21％和23％的患者使用了非甾体类抗炎药和2级镇痛药。这些治疗对于神经性疼痛无效。六例患者在其脚上尝试了5％利多卡因膏药，疗效良好。结论EBS-1患者具有神经病性特征的频繁且严重的疼痛。该疼痛未得到充分治疗，并影响了生活质量。

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