Family and Quality of Life Challenges in Mycosis Fungoides Patients: A Case-Control Study from Shiraz, Southern Iran.

Abstract

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.