Dastgheib Ladan, Shekouh Dorsa, Sepaskhah Mozhdeh, Salehi Alireza
Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
Department of Dermatology, Shiraz University of Medical Sciences, Shiraz, Iran.
Dermatol Pract Concept. 2025 Jul 31;15(3):5361. doi: 10.5826/dpc.1503a5361.
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.
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.
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.
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).
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.
皮肤恶性肿瘤患者，如皮肤T细胞淋巴瘤（CTCL）患者及其家庭护理人员的生活质量（QoL）受到疾病及其治疗的广泛影响。
本研究旨在通过设拉子转诊中心的自填问卷，评估疾病及其治疗对蕈样肉芽肿（MF）患者及其家庭的影响。
蕈样肉芽肿患者（CTCL最常见的变体之一）及其一名家庭成员通过填写皮肤病生活质量指数（DLQI）和家庭皮肤病生活质量指数（FDLQI）问卷参与本研究。患者和健康对照还完成了世界卫生组织生活质量简表（WHOQOL - BREF）。
共有113例患者、91名患者亲属和129名健康对照参与本研究。DLQI总得分的平均值为8.00±6.41。WHOQOL - BREF及其子领域在疾病晚期、疾病活动期、MSWAT评分增加、疾病早期、头颈部病变部位以及使用干扰素和吉西他滨时有所改善。DLQI的“症状与感受”和“休闲”维度受影响最大，而对于WHOQOL - BREF，疾病对“心理”、“环境”和“总体健康”方面有显著影响（分别为P<0.001、P = 0.045和P<0.001）。考虑到研究参与者的社会人口学特征，受教育程度较高的患者痛苦更大（P = 0.035）。FDLQI得分为8.44±6.93，不受性别、关系或护理人员教育水平的影响。家庭生活质量在疾病过程中、头颈部病变（P = 0.003）、病程小于12个月（P = 0.029）以及使用干扰素时（P = 0.034）会恶化。
由于患者和护理人员在诊断后的第一年、头颈部病变以及特定治疗期间会经历痛苦，建议采取适当措施以防止不切实际的期望并建立更好的应对机制。
