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二氧化碳激光治疗皮肤神经纤维瘤:技术与患者体验。

Treatment of cutaneous neurofibromas with carbon dioxide laser: Technique and patient experience.

机构信息

Department of Dermatology, University of Turku and Turku University Hospital, Turku, Finland; Department of Dermatology and Venereology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Dermatology and Venereology, Region Västra Götaland, Sahlgrenska University Hospital, Gothenburg, Sweden.

Department of Dermatology, Hopital Henri Mondor, Assistance Publique-Hôpital Paris (AP-HP), Créteil, France.

出版信息

Eur J Med Genet. 2022 Jan;65(1):104386. doi: 10.1016/j.ejmg.2021.104386. Epub 2021 Nov 9.

Abstract

Cutaneous neurofibromas (cNF) are one of the hallmarks of neurofibromatosis 1 (NF1). The number of cNFs varies between individuals from a few to hundreds or even thousands and increases throughout adult life. cNFs cause a significant disease burden to adult patients and constitute an unmet need for therapy, since they may cause itch and pain and, being conspicuous and unsightly, stigmatize the patient. There is a lack of reports on how the outcome of various treatment options are perceived by the patients. Here we describe a technique for cNF removal using CO laser, and report how patients experience the procedure. Questionnaires were sent to patients who had had CO laser surgery in the French Referral Center for Neurofibromatoses, and in the Turku University Hospital, Finland, to retrospectively evaluate the patients' global satisfaction of the procedure, treatment indications, and reasons for withdrawal from treatment, if this was the case. The number of returned questionnaires was 233/473 in France and 23/27 in Finland. The results showed that the most important indications for cNF removal were esthetic, and pain and itch caused by the tumors. In general, the procedure was well tolerated, and the degree of satisfaction was 8-10 on a scale from 0 to 10. For those 30% who discontinued the tumor removal program, the main reasons were organizational constraints, a non-satisfactory esthetic result, too many cNFs to treat, or problems with healing. Thus, the CO laser method is well tolerated but does not fully answer to the needs of the patients. Since medical treatment is not yet available, we encourage the use of laser removal of cNFs as a feasible method to decrease the tumor burden of the patients.

摘要

皮肤神经纤维瘤(cNF)是神经纤维瘤病 1 型(NF1)的特征之一。cNF 的数量因人而异,从几个到数百个甚至数千个不等,并在整个成年期内增加。cNF 给成年患者带来了巨大的疾病负担,构成了治疗的未满足需求,因为它们可能引起瘙痒和疼痛,并且由于引人注目和不美观,会给患者带来耻辱。关于各种治疗选择的结果如何被患者感知的报告很少。在这里,我们描述了一种使用 CO 激光去除 cNF 的技术,并报告了患者对该手术的体验。我们向法国神经纤维瘤病转诊中心和芬兰图尔库大学医院接受 CO 激光手术的患者发送了问卷,以回顾性评估患者对手术的总体满意度、治疗指征以及如果退出治疗的原因(如果有)。法国有 233/473 份问卷,芬兰有 23/27 份问卷。结果表明,去除 cNF 的最重要指征是美观和肿瘤引起的疼痛和瘙痒。总的来说,该手术耐受性良好,满意度评分为 0-10 分中的 8-10 分。对于 30%停止肿瘤切除计划的患者,主要原因是组织限制、不满意的美容效果、需要治疗的 cNF 太多,或愈合问题。因此,CO 激光方法耐受性良好,但不能完全满足患者的需求。由于尚未提供医疗治疗,我们鼓励使用激光去除 cNF,作为减轻患者肿瘤负担的可行方法。

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