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《突尼斯一项探索性定性研究:关于治疗方案和病例管理,皮肤病利什曼病患者的心理社会影响、经历和观点》。

Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia.

机构信息

Department of Medical Epidemiology, Pasteur Institute of Tunis, Tunis, Tunisia.

Laboratory of Transmission, Control and Immunobiology of Infections (LR11IPT02), Pasteur Institute of Tunis, Tunis, Tunisia.

出版信息

PLoS One. 2020 Dec 1;15(12):e0242494. doi: 10.1371/journal.pone.0242494. eCollection 2020.


DOI:10.1371/journal.pone.0242494
PMID:33259489
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7707605/
Abstract

Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients' wellbeing. We explored patients' perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with ten confirmed CL patients at two L. major endemic sites in Southern Tunisia (Sidi Bouzid and Gafsa). Participants were selected using a sampling approach along a spectrum covering e.g. age, sex, and clinical presentation. Patients' experiences, opinions and preferences were explored, and their detailed accounts gave an insight on the impact of CL on their everyday lives. The impact of CL was found to be considerable. Most patients were not satisfied with treatment performance and case management. They expected a shorter healing time and better accessibility of the health system. Tolerance of the burden of disease was variable and ranged from acceptance of hidden scars to suicidal thoughts resulting from the fear to become handicapped, and the stress caused by close relatives. Some believed CL to be a form of skin cancer. Unexpectedly, this finding shows the big gap between the perspectives of patients and assumptions of health professionals regarding this disease. This study provided valuable information for better case management emphasizing the importance of improving communication with patients, and accessibility to treatment. It generated context-specific knowledge to policy makers in Tunisia to implement effective case management in a country where access to treatment remains a challenge due to socio-economic and geographic barriers despite a long tradition in CL control.

摘要

虽然在感染利什曼原虫(L.)主要种的情况下皮肤利什曼病(CL)是非致命性的,且大多可自行痊愈,但主要还是为了减少病变的愈合时间而进行治疗。人们对改善疤痕的关注度较低,尤其是在身体的美学相关区域,这会极大地影响患者的健康。我们探讨了患者对治疗方案的看法以及疾病(病变和疤痕)带来的社会和心理负担。在突尼斯南部的两个 L. major 流行地区(西迪布济德和盖夫萨),对十名确诊的 CL 患者进行了个体深入访谈。参与者是通过采样方法选择的,采样方法涵盖了例如年龄、性别和临床表现等方面。探索了患者的经验、意见和偏好,他们的详细描述深入了解了 CL 对他们日常生活的影响。结果发现 CL 的影响相当大。大多数患者对治疗效果和病例管理不满意。他们希望愈合时间更短,卫生系统更便于使用。对疾病负担的容忍度各不相同,从接受隐藏的疤痕到因害怕残疾而产生的自杀念头,以及近亲带来的压力。一些人认为 CL 是一种皮肤癌。出乎意料的是,这一发现表明了患者和卫生专业人员对这种疾病的看法之间存在很大的差距。本研究为更好的病例管理提供了有价值的信息,强调了改善与患者沟通和治疗可及性的重要性。它为突尼斯的决策者提供了针对该国的具体情况的知识,突尼斯尽管在 CL 控制方面有着悠久的传统,但由于社会经济和地理障碍,获得治疗仍然是一个挑战。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a433/7707605/9f224b19cee3/pone.0242494.g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a433/7707605/6ece4c333804/pone.0242494.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a433/7707605/9f224b19cee3/pone.0242494.g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a433/7707605/6ece4c333804/pone.0242494.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a433/7707605/9f224b19cee3/pone.0242494.g002.jpg

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本文引用的文献

[1]
Patients' preferences of cutaneous leishmaniasis treatment outcomes: Findings from an international qualitative study.

PLoS Negl Trop Dis. 2020-2-24

[2]
An international qualitative study exploring patients' experiences of cutaneous leishmaniasis: study set-up and protocol.

BMJ Open. 2018-6-15

[3]
"The mosquitoes that destroy your face". Social impact of Cutaneous Leishmaniasis in South-eastern Morocco, A qualitative study.

PLoS One. 2017-12-20

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Int J Womens Dermatol. 2016-6-16

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J Agromedicine. 2017

[6]
Psychological and Psychosocial Consequences of Zoonotic Cutaneous Leishmaniasis among Women in Tunisia: Preliminary Findings from an Exploratory Study.

PLoS Negl Trop Dis. 2016-10-27

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Lancet Infect Dis. 2016-2-12

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Asian Pac J Trop Biomed. 2014-7

[9]
Parasite load decrease during application of a safe and easily applied antileishmanial aminoglycoside cream.

PLoS Negl Trop Dis. 2014-5-22

[10]
Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research.

Adm Policy Ment Health. 2015-9

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