Survey data from patients and medical staff on the impact of cutaneous leishmaniasis on patient’s quality of life and on the cost of diagnostic to the patients and to the health system

This dataset contains cross-sectional survey response data and sample questionnaires administered to cutaneous leishmaniasis (CL) patients at the clinic of the National Malaria and Leishmaniasis Control Program (NMLCP), Kabul, from April to June 2016.<br>Data files are in MS Excel <b>.xlsx</b> format, questionnaire files in MS Word <b>.docx</b> format, both are accessible via MS Office or open office applications.<br><br>The related study aims to better understand and capture the cost of diagnostic to the patients and the health system as well as the impact of a cutaneous leishmaniasis episode on patient’s quality of life. Diagnostic costs were collected from three different questionnaires and included costs borne by patients, medical staff and equipment costs as well as treatment costs. As for the quality of life, the standardized ‘Dermatology Life Quality Index’ (DLQI) questionnaire was administered to individuals enrolled in the study. The DLQI questionnaire aims to assess how skin conditions impacted on the quality of life of the individual over the preceding week.<br><b>CL_DLQI_database.xlsx</b> and <b>CL_Patient_Cost_database.xlsx: </b>The data files hold response data gathered from the ‘patient cost questionnaire’, administered to a subset (n=111) of the 274 individuals enrolled in the study, regardless of their diagnostic results. The first half of the 'patient cost' questionnaire was filled in on the day of diagnosis and the remaining half was filled in at the end of the treatment period by positive patients only, with the help of a fieldworker. This questionnaire gathers information related to direct (i.e. transportation) and indirect (i.e. wage loss during travelling and incapacity to work during illness period) costs associated with a potential CL episode in Kabul, Afghanistan. Response data on the socioeconomic background of the study participants is also provided.<b><br></b><b>CL_DLQI_database.xlsx </b>records controlled response values of “A little, “A lot” or “Very much” against questions on how much CL has affected the quality of life of the individual over the past week.<br><b>CL_Patient_Cost_database.xlsx </b>records quantitative, controlled response and qualitative (long form) responses.<br><br>Individual participant identifiers have been replaced with unique 'Patient ID's against which the other variables are recorded.<br><b>Questionnaire_laboratory and medical_staff_CLeishPOC_Afghanistan.docx:</b>The ‘laboratory and medical staff’ questionnaire (refer to questionnaire II in the Appendix) captures cost estimates among medical staff running CL diagnostics. These include the time spent on average per diagnostic; the types of medical staff required and their salaries; the equipment required to run the diagnostic; etc. <br><b>Questionnaire_Drugs and Treatment_CLeishPOC_Afghanistan.docx:</b>The ‘drug and treatment’ questionnaire collected information mainly related to costs of intralesional and intramuscular treatment.<br><br>The study has been carried out in conformity with the Helsinki Declaration, and approved by the Institutional Review Board of the National Public Health Institute, Ministry of Public Health, Islamic Republic of Afghanistan (Approval N° 361549).The participants have been taken through informed consent in a one-on-one session with a member of the study. A written informed consent was obtained from each of the participants. For illiterate individuals, the informed consent process was conducted in the presence of an impartial witness and for minors, the consent from a parent or guardian had to be obtained to be enrolled in the study.<br><br>

本数据集包含2016年4月至6月期间，在阿富汗喀布尔国家疟疾与利什曼病控制项目（National Malaria and Leishmaniasis Control Program, NMLCP）诊所面向皮肤利什曼病（cutaneous leishmaniasis, CL）患者开展的横断面调查应答数据与配套问卷样例。
数据文件格式为Microsoft Excel .xlsx，问卷文件格式为Microsoft Word .docx，均可通过Microsoft Office或开源办公套件打开。

本关联研究旨在全面测算并解析患者与卫生系统所承担的诊断成本，同时探究皮肤利什曼病发病对患者生活质量造成的影响。诊断成本通过三份独立问卷采集，涵盖患者自付费用、医护人员相关成本、设备成本及治疗成本。针对生活质量维度，研究向入组受试者发放了标准化皮肤病生活质量指数（Dermatology Life Quality Index, DLQI）问卷，该问卷用于评估过去一周内皮肤病症对受试者生活质量的影响程度。

**CL_DLQI_database.xlsx** 与 **CL_Patient_Cost_database.xlsx**：这两份数据文件收录了来自「患者成本问卷」的应答数据。该问卷面向研究入组的274名受试者中的111名亚组人群发放，无论其诊断结果如何。「患者成本问卷」的前半部分于诊断当日填写，后半部分仅由确诊阳性的患者在治疗周期结束后，在现场工作人员协助下完成填写。该问卷采集阿富汗喀布尔地区疑似皮肤利什曼病发病相关的直接成本（如交通费用）与间接成本（如出行误工、患病期间无法工作导致的薪资损失）相关信息，同时收录了研究受试者的社会经济背景应答数据。

**CL_DLQI_database.xlsx** 记录了针对「过去一周皮肤利什曼病对受试者生活质量的影响程度」这一问题的可控应答值，应答选项为「有一点影响」「有较大影响」或「有极大影响」。**CL_Patient_Cost_database.xlsx** 则收录了定量可控应答与定性（开放式长文本）应答数据。所有受试者的原始身份标识均已替换为唯一的「患者ID」，其余变量均基于该ID进行关联记录。

**Questionnaire_laboratory and medical_staff_CLeishPOC_Afghanistan.docx**：该「实验室与医护人员问卷」（详见附录问卷II）用于采集开展皮肤利什曼病诊断的医护人员相关成本测算数据，包括单次诊断的平均耗时、所需医护人员类型与薪资水平、诊断所需设备成本等。
**Questionnaire_Drugs and Treatment_CLeishPOC_Afghanistan.docx**：该「药物与治疗问卷」主要采集病灶内注射与肌肉注射治疗的相关成本信息。

本研究严格遵循《赫尔辛基宣言（Helsinki Declaration）》开展，并已获得阿富汗伊斯兰共和国公共卫生部国家公共卫生研究所伦理审查委员会的批准（批准号：361549）。研究人员通过一对一访谈向受试者详细说明知情同意（informed consent）事项，所有受试者均签署了书面知情同意书。对于文盲受试者，知情同意流程需在无利害关系见证人在场的情况下完成；对于未成年受试者，则需获得其父母或监护人的同意方可入组。