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Nuancing stigma through ethnography: the case of cutaneous leishmaniasis in Suriname.通过人种志细化污名:苏里南皮肤利什曼病案例
Soc Sci Med. 2016 Feb;151:139-46. doi: 10.1016/j.socscimed.2015.12.044. Epub 2016 Jan 2.
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Quality of life in patients with cutaneous leishmaniasis.皮肤利什曼病患者的生活质量。
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Cruel disease, cruel medicine: self-treatment of cutaneous leishmaniasis with harmful chemical substances in Suriname.残酷的疾病,残酷的药物:苏里南人用有害的化学物质自行治疗皮肤利什曼病。
Soc Sci Med. 2012 Sep;75(6):1097-105. doi: 10.1016/j.socscimed.2012.04.038. Epub 2012 May 26.
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Interpretation of Skindex-29 scores: cutoffs for mild, moderate, and severe impairment of health-related quality of life.Skindex-29评分的解读:健康相关生活质量轻度、中度和重度损害的临界值。
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Health-related quality of life assessment in dermatology: interpretation of Skindex-29 scores using patient-based anchors.皮肤病学中的健康相关生活质量评估:使用基于患者的锚定物来解释 Skindex-29 评分。
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Marring leishmaniasis: the stigmatization and the impact of cutaneous leishmaniasis in Pakistan and Afghanistan.毁容性利什曼病:巴基斯坦和阿富汗皮肤利什曼病的污名化及影响
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苏里南“新世界”皮肤利什曼病病变部位及其对患者生活质量的影响。

Body location of "New World" cutaneous leishmaniasis lesions and its impact on the quality of life of patients in Suriname.

机构信息

Dermatology Service, Ministry of Health, Paramaribo, Suriname.

Amsterdam University Medical Centers, Academic Medical Centre at the University of Amsterdam, Department of Medical Microbiology and Infection Prevention, Experimental Parasitology Unit, Amsterdam, the Netherlands.

出版信息

PLoS Negl Trop Dis. 2020 Oct 23;14(10):e0008759. doi: 10.1371/journal.pntd.0008759. eCollection 2020 Oct.

DOI:10.1371/journal.pntd.0008759
PMID:33095776
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7641459/
Abstract

Cutaneous leishmaniasis (CL) is a chronic skin infection caused by Leishmania parasites, causing single or multiple skin nodules and ulcers on the exposed body locations. Healing of lesions is followed by scar formation. Active and healed CL lesions may affect patient's health related quality of life (HRQL). The aim of this study was to determine whether the body location of the leishmaniasis lesions affects the HRQL of localized CL patients in Suriname. The HRQL of 163 patients with CL was assessed by Skindex-29 and EQ-5D/VAS questionnaires. Forty-six patients out of the total study population also participated in a qualitative anthropological study involving in depth interviews. All patients were allocated in 4 groups in the following hierarchy: head and face, upper limbs, lower limbs and trunk. Patients with lesions on the lower limbs had significantly higher Skindex-29 scores, indicating worse HRQL, in the symptom scale compared to lesions on head/face and trunk. The lower limb group was more likely to report problems in the dimensions self-care, mobility, daily activities and pain/discomfort of the EQ-5D. Little to no social stigma was reported in the in-depth interviews. The findings of this study indicate that Surinamese patients with CL lesions located on the lower limbs had more impairment in HRQL than on other body locations. Stigma related to CL seems to be virtually absent in Suriname.

摘要

皮肤利什曼病(CL)是由利什曼原虫引起的慢性皮肤感染,导致暴露部位的身体出现单个或多个皮肤结节和溃疡。病变愈合后会形成疤痕。活动性和已愈合的 CL 病变可能会影响患者的健康相关生活质量(HRQL)。本研究旨在确定苏里南局部 CL 患者的病变身体位置是否会影响其 HRQL。通过 Skindex-29 和 EQ-5D/VAS 问卷评估了 163 例 CL 患者的 HRQL。总研究人群中有 46 名患者还参加了一项涉及深入访谈的定性人类学研究。所有患者按以下层次结构分为 4 组:头面部、上肢、下肢和躯干。与头/面和躯干上的病变相比,下肢病变患者的 Skindex-29 症状量表评分明显更高,表明 HRQL 更差。下肢组更有可能报告 EQ-5D 中的自我护理、行动能力、日常活动和疼痛/不适维度的问题。在深入访谈中几乎没有报告与 CL 相关的耻辱感。本研究的结果表明,位于下肢的苏里南 CL 病变患者的 HRQL 受损程度比位于其他身体部位的患者更严重。在苏里南,与 CL 相关的耻辱感似乎几乎不存在。