真菌性真菌病患者的家庭和生活质量挑战:来自伊朗南部设拉子的病例对照研究。

IF 2.3 4区 医学 Q2 DERMATOLOGY
Ladan Dastgheib, Dorsa Shekouh, Mozhdeh Sepaskhah, Alireza Salehi
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引用次数: 0

摘要

摘要:皮肤t细胞淋巴瘤(CTCL)等皮肤恶性肿瘤患者及其家庭照顾者的生活质量(QoL)受到疾病及其治疗的广泛影响。目的:本研究旨在通过设拉子转诊中心的问卷调查,评估疾病及其治疗对MF患者及其家属的影响。方法:采用皮肤病学生活质量指数(DLQI)和家庭皮肤病学生活质量指数(FDLQI)问卷,对CTCL最常见的一种真菌样真菌病患者及其一名家庭成员进行调查。世界卫生组织生活质量简要版(WHOQOL-BREF)也由患者和健康对照者完成。结果:共113例患者、91例患者亲属和129名健康对照者参与本研究。DLQI总分平均为8.00±6.41分。WHOQOL-BREF和/或其子域随着疾病进展、活活跃、MSWAT评分升高、疾病早期、头颈部位置以及干扰素和吉西他滨的使用而改善。DLQI的“症状与感受”和“休闲”维度受到的影响最大,而在WHOQOL-BREF方面,疾病对“心理”、“环境”和“一般健康”方面的影响显著(p结论:由于患者和护理人员在诊断的第一年经历的痛苦,头颈部病变,以及具体的治疗,建议采取适当的措施防止不切实际的期望和更好的应对机制。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Family and Quality of Life Challenges in Mycosis Fungoides Patients: A Case-Control Study from Shiraz, Southern Iran.

Introduction: The quality of life (QoL) of patients suffering from cutaneous malignancies like cutaneous T-cell lymphoma (CTCL) and their family caregivers is widely affected by the disease and its treatment.

Objectives: This study aimed to evaluate the impact of the disease and its treatment on patients with MF and their families through self-administered questionnaires in our referral center in Shiraz.

Methods: Patients with mycosis fungoides, the most common variant of CTCL, and one of their family members participated in this study by filling out the questionnaires on Dermatology Life Quality Index (DLQI) and Family Dermatology Life Quality Index (FDLQI). The World Health Organization Quality of Life Brief Version (WHOQOL-BREF) was also completed by patients and healthy controls.

Results: A total of 113 cases, 91 patients' relatives, and 129 healthy controls participated in this study. The mean DLQI total score was 8.00 ± 6.41. WHOQOL-BREF and/or their subdomains were ameliorated with advanced stage, active disease, increasing MSWAT score, early disease, the head/neck location, as well as interferon and gemcitabine. "Symptoms and feelings" and "leisure" dimensions of DLQI were the most affected, while regarding WHOQOL-BREF, the disease significantly impacted the "psychological", "environmental" and "general health" aspects (P<0.001, P=0.045, and P<0.001, respectively). Given the sociodemographic characteristics of the study participants, patients with a higher level of education suffered more (P=0.035).The FDLQI score was 8.44 ± 6.93, not affected by sex, relationship, or caregivers' education level. Family QoL deteriorated over the course of the disease (P=0.020), head/neck lesions (P= 0.003), less than 12 months duration (P=0.029), and interferon (P=0.034).

Conclusions: Due to the distress that patients and caregivers experience during the first year of diagnosis, head/neck lesions, and specific treatment, appropriate measures to prevent unrealistic expectations and better coping mechanisms are recommended.

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