Dermatology: Practical and Conceptual Original Article | Dermatol Pract Concept. 2025;15(3):5361 1 Family and Quality of Life Challenges in Mycosis Fungoides Patients: A Case-Control Study from Shiraz, Southern Iran Ladan Dastgheib1,2, Dorsa Shekouh3, Mozhdeh Sepaskhah1,2, Alireza Salehi3 1 Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 2 Department of Dermatology, Shiraz University of Medical Sciences, Shiraz, Iran 3 Department of MPH, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran Key words: Cutaneous T-cell lymphoma, Mycosis fungoides, Quality of life, Family dermatology life quality index, Family burden Citation: Dastgheib L, Shekouh D, Sepaskhah M, Salehi A. Family and Quality of Life Challenges in Mycosis Fungoides Patients: A Case- Control Study from Shiraz, Southern Iran. Dermatol Pract Concept. 2025;15(3):5361. DOI: https://doi.org/10.5826/dpc.1503a5361 Accepted: May 1, 2025; Published: July 2025 Copyright: ©2025 Dastgheib et al. This is an open-access article distributed under the terms of the Creative Commons Attribution- NonCommercial License (BY-NC-4.0), https://creativecommons.org/licenses/by-nc/4.0/, which permits unrestricted noncommercial use, distribution, and reproduction in any medium, provided the original authors and source are credited. Funding: None. Competing Interests: None. Authorship: All authors have contributed significantly to this publication. Corresponding Author: Alireza Salehi, MD, MPH, PhD, Professor of Epidemiology, Department of MPH, School of Medicine, Shiraz University of Medical Sciences, Zand blvd, Shiraz, Iran. E-mail: salehialireza45@yahoo.com Introduction: The quality of life (QoL) of patients suffering from cutaneous malignancies like cuta- neous 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 fam- ily 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). ABSTRACT 2 Original Article | Dermatol Pract Concept. 2025;15(3):5361 Introduction Mycosis fungoides (MF), the most common type of cuta- neous t-cell lymphoma (CTCL), is a chronic disease with a recurrent nature which primarily emerges as erythematous patches and plaques, with a minority of patients develop- ing tumors, ulceration, and even systemic involvement and death [1]. This rare disease had an estimated incidence of 3.7 cases per million persons per year in the United States in 2016 [2]. There are multiple strategies for MF treatment, including systemic and local skin-directed therapies [3]. Unfortunately, MF remains a relatively incurable disease; planning for the most effective yet tolerable treatment strategy could poten- tially improve the patient’s quality of life (QoL). Patients with CTCL perceive their condition as enduring and persistent, exhibiting a somewhat pessimistic emotional reaction towards their illness [4]. Demierre et al. indicated that CTCL (80% of the study population were MF) some- how affects the QoL of patients; almost 72.7% of cases were depressed, and about 39% felt ashamed [5]. Therefore, an assessment of the quality of life of these patients can contribute to better management of their dis- ease and mood, enhancing their psychological well-being, with the ultimate aim of improving overall quality of life through treatment [6]. Moreover, assessing the QoL can help physicians make better decisions about treatment strat- egies [7, 8].  Aside from the patients themselves, their family members also feel the strain and burden of chronic and malignant dis- ease as caregivers. Basra et al. in their study on the impact of skin diseases on family members concluded that these dis- eases can significantly impair the health-related QoL of the patient’s family in many ways, and asking them about this impact is greatly appreciated [9]. Given the significance of the subject and the paucity of published articles, 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 re- ferral center in Shiraz. Materials and Methods Study Design and Setup In this cross-sectional study, patients with MF were recruited from the outpatient MF clinic affiliated with Shiraz Univer- sity of Medical Sciences, a referral clinic in southern Iran, between February 2022 and January 2023. All consecutive patients with histologically confirmed MF (hematoxylin & eosin and immunohistochemistry staining) were enrolled according to the inclusion and exclusion criteria and their willingness to participate in the study. The diagnosis of new and early MF was done according to the ISCL (International Society of Cutaneous Lymphoma) algorithm. One of the first-degree relatives accompanying the patient was consid- ered the family member. Also, normal healthy individuals participated in this study as a control group. Inclusion and Exclusion Criteria We studied patients aged over 18, with diagnosis made more than one month earlier and able to read or understand Farsi to complete the questionnaires. Caregivers or family mem- bers (parent, sibling, spouse, or offspring) willing to partic- ipate in the study were also recruited. Normal healthy age, sex, and education-matched population aged over 18 with- out any skin disease were considered as the control group. Measures We collected demographics including age, sex, education, marital status, duration of the disease (since the diagnosis was confirmed), course of the disease, severity of disease based on Modified Severity-Weighted Assessment Tool (mSWAT) score, stage (TNM staging), and treatment modal- ity according to each patient’s medical record. Questionnaires We used three questionnaires: the Persian version of Derma- tology Life Quality Index (DLQI), the Family Dermatology Life Quality Index (FDLQI), and the World Health Orga- nization Quality of Life Brief Version (WHOQOL-BREF) 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 diag- nosis, head/neck lesions, and specific treatment, appropriate measures to prevent unrealistic expecta- tions and better coping mechanisms are recommended. Original Article | Dermatol Pract Concept. 2025;15(3):5361 3 (ll patients completed the three questionnaires, while the healthy control group completed only the WHOQOL-BREF questionnaire. The DLQI questionnaire contains 10 questions grouped into six subscales, “symptoms and feelings”, “daily activities”, “leisure”, “work and school”, “personal relationships”, and “treatment” [10].  Each question is scored from 0 (not at all) to 3 (very). The sum of these subscales yields the total score, which is categorized into “no effect” (score: 0-1), “small effect” (score: 2-5), “moderate effect” (score: 6-10), “very large effect” (score: 11-20), and “extremely large effect” (score: 21-30). Dermatology-specific quality of life was assessed using the DLQI questionnaire, translated into Persian by Aghaei et al. [11].  The FDLQI questionnaire consists of 10 questions each scored from 0 (not at all) to 3 (very much), and a higher total score indicates a larger effect of the disease on family QoL. The internal consistency of this test was measured as Cronbach’s alpha = 0.88, and the reliability was measured as interclass correlation coefficient = 0.94 [12, 13]. The FDLQI was administered in its Persian version, which has been vali- dated by Safizadeh et al. [13]. The WHOQOL-BREF questionnaire consists of 26 items, scored from 1 (very bad) to 5 (very good). A higher to- tal score means a better quality of life. It is also divided into four domains of quality of life, including “physical” (seven items), “psychological” (six items), “social” (three items), and “environmental” (eight items) [14]. The internal consis- tency of this questionnaire was examined using Cronbach’s alpha, resulting in a value of 0.896. The internal reliability of all domains was found to be 0.70 [15, 16]. The Persian version of the WHOQOL-BREF questionnaire, validated by Nejat et al. [17], was used to assess quality of life. Statistical Analysis Statistical analysis was performed using SPSS software, ver- sion 24. We report mean and standard deviation (SD) for quantitative variables, and relative frequency for qualitative variables. The difference significance assessed using an inde- pendent two-sample T, one-way ANOVA, and Pearson cor- relation tests were used to analyze the quantitative variables. Chi-squared test was performed for qualitative variables. Statistical significance was set at P<0.05. Ethical Consideration The Ethics Committee of Shiraz University of Medical Sci- ences approved this study (approval code IR.SUMS.MED. REC.1403.035). Verbal and written consent were obtained from the participants after informing them about the study protocol. Results The sociodemographic and clinical characteristics of the study participants (113 cases, 91 patients’ relatives, and 129 healthy controls) are shown in Tables 1 and 2, respectively. Table 1. Demographic Data of the Study Participants Parameters Participants P-value Caregiver (n=91) Case (n=113) Control (n=129) Sex, n (%) Male 42 (37.2) 51 (39.5) 0.654 51 (56.0) Female 71 (62.8) 78 (60.5) 40 (43.1) Age (y), mean ± SD (range) 43.85 ± 14.20 (18-80) 42.13 ± 13.19 (22-81) 0.338 44.73 ± 12.75 (17-77) Marital status, n (%) Unmarried 25 (22.1) 31 (24.0) 0.937 - Married 88 (77.9) 98 (76.0) - Educational status, n (%) Illiterate 4 (3.5) 3 (2.3) 0.366 0 High school 24 (21.2) 24 (18.6) 11 (12.1) Diploma 30 (26.6) 32 (24.8) 32 (35.2) Bachelor 34 (30.1) 46 (35.7) 27 (29.6) MS and higher 10 (8.9) 24 (18.6) 14 (15.4) Not Known 11(9.7) 0 7(7.7) SD, standard deviation. 4 Original Article | Dermatol Pract Concept. 2025;15(3):5361 Table 2. Clinical Characteristics of the Patients. Parameters Value Disease duration(m), mean ± SD, (range) 52.49 ± 38.58 (2 – 168) Course of disease, n (%) Active progressive 20 (17.7) Partial remission 59 (52.2) Complete remission 28 (24.8) Recurrence 6 (5.3) Stage, n (%) 1-A 21 (18.6) 1-B 60 (53.1) 2-A 22 (19.5) 2-B & 3-A 10 (8.8) mSWAT** mean ± SD, (range) 36.57 ± 29.96 (3 – 174) Lesion location Groin lesion, n (%) Yes 49 (43.4) No 64 (56.6) Head&neck lesion, n (%) Yes 22 (19.5) No 91 (80.5) Treatment Topical treatment, n (%) Yes 103 (91.1) No 10 (8.9) Phototherapy, n (%) Yes 78 (69.0) No 35 (31.0) Acitretin, n (%) Yes 40 (35.4) No 73 (64.6) Methotrexate, n (%) Yes 15 (13.3) No 98 (86.7) Interferon, n (%) Yes 23 (20.4) No 90 (79.6) Gemcitabine monotherapy, n (%) Yes 4 (3.5) No 109 (96.5) The enrollment of participants is shown in Figure 1. Of the 113 patients with MF diagnosis, 71 (62.8%) were female and 42 (37.2%) were male; in the healthy control group, 78 (60.5%) were female and 51 (39.5%) were male. Both groups were matched in terms of sociodemographic vari- ables, including sex, age, marital status, and educational status. As shown in Table 2, more than half of the patients had stage IB disease. None of the participants suffered from Sezary syndrome or visceral involvement. DLQI The mean DLQI total score was 8.00 ± 6.41, with a range of 0 to 25 in our patients, and more than half of the patients experienced moderate, very large, or extremely large effects of the disease on their lives (Figure 2). Analysis revealed that DLQI was significantly ameliorated with advanced stage of disease, i.e., active disease, increasing MSWAT score, and also the location of the lesion, with significantly higher im- pact of head/neck lesion on patients’ QoL (Table 3). Different treatment modalities did not significantly af- fect the total DLQI score except for better QoL in patients receiving topical therapy. Regarding the subscales, interferon significantly affected “leisure”, and the personal relationship index of DLQI (P=0.045, P=0.037), and gemcitabine also de- teriorated the patients’ “symptoms and feelings” (P= 0.046). Based on the DLQI subscales, “symptoms and feelings” and “leisure” dimensions of DLQI were the most impacted by MSWAT, disease stage, course of the disease, and location of the lesion (Table 3). Interestingly, the DLQI total score and its dimensions were not affected by age, disease duration, educational level, or marital status (P>0.05). Although we also analyzed the effect of disease duration by dividing less and more than 12 months from the time of diagnosis, results indicated no significant difference in the DLQI score in either group. FDLQI The FDLQI score was 8.44 ± 6.93 with a range of 0–24 in patients’ relatives. Our results revealed a significant nega- tive correlation between FDLQI score and disease duration, (P=0.008). Family QoL deteriorated over the course of dis- ease and for head/neck lesions (P=0.020, P=0.003, respec- tively). Similar to the DLQI score, FDLQI indicated that interferon statistically significantly influenced the patients’ family QoL (P=0.034) (Table 4). Data analysis revealed no significant relationship between the sex, family relationship, and educational level of the caregivers and the FDLQI score. We also analyzed the FDLQI score, with less than and more than 12 months of caregiving, which indicated signifi- cant deteriorated Qol with early disease (P=0.029). As shown in Figure 3, the areas most affected in caregiv- ers were extra-expenditure, burden of care, and emotional. WHOQOL-BREF WHOQOL-BREF total score demonstrated a significantly higher score, i.e., better quality of life, in the control group in comparison with the MF cases (P=0.001). Although Original Article | Dermatol Pract Concept. 2025;15(3):5361 5  Among treatment regimens, topical treatment enhanced the general health perception of patients (P=0.043). Further analysis of the WHOQOL score of patients under 12 months from diagnosis and those more than 12 months revealed that there was significantly better QoL in those with prolonged duration (P=0.034). Finally, Table 6 reveals that the total QoL scores mea- sured by all three questionnaire instruments had a significant correlation with each other, demonstrating valid QoL eval- uation (P<0.001). Discussion According to the present study, the QoL of patients with MF and their families was impaired by this chronic skin cancer. The mean DLQI score, 8.00 ± 6.41 showing moderate effect, WHOQOL-BREF dimension scores revealed that the disease had no impact on the physical and social relationship di- mensions of MF patients (P=0.101, P=0.097, respectively), it significantly ameliorated the psychological, environmental, and general health aspect of the cases compared with healthy individuals (P<0.001, P=0.045, and P<0.001, respectively) (Table 5). Considering the impact of patients’ sociodemographic and clinical characteristics, it was demonstrated that edu- cational status significantly impacted the QoL of patients (P=0.035), and that patients with active disease had worse general health QoL (P=0.031). The MSWAT score showed significantly deteriorated physical, psychological, and gen- eral health, and the total QoL of patients (r=-0.244, P=0.012, r=-0.256, P=0.008, r=-0.197, P=0.043, r=-0.247, P=0.011, respectively). St ud y Po pu la �o n N =3 43 Pa�ents N=113 completed DLQI ques�onnaire N=113 completed WHOQOL-BREF ques�onnaire N=111 incomplete WHOQOL-BREF ques�onnaire N=2 Pa�ent’s Rela�ves N=98 completed FDLQI ques�onnaire N= 91 incomplete FDLQI ques�onnaire N=7 Healthy Controls N=132 completed WHOQOL-BREF ques�onnaire N= 129 incomplete WHOQOL-BREF ques�onnaire N=3 Figure 1. Flow diagram of participants enrolled in the study. Figure 2. Percentage of DLQI Categorical scale. 6 Original Article | Dermatol Pract Concept. 2025;15(3):5361 Table 3. Association between DLQI dimension scores and patients’ clinical characteristics. DLQI subscales parameters Total Symptoms and feelings Daily activities Leisure Work and school Personal relationships Treatment Disease duration Pearson Correlation -0.105 -0.141 0.069 -0.186* -0.098 -0.084 -0.004 P-value 0.272 0.137 0.470 0.050 0.306 0.379 0.966 MSWAT Pearson Correlation 0.318 0.279 0.187 0.285 0.166 0.306 0.152 P-value <0.001 0.004 0.055 0.003 0.089 0.001 0.119 Disease stage 1-A 4.71 ± 4.73 1.61 ± 1.77 0.81 ± 0.98 0.76 ± 1.33 0.24 ± 0.43 0.38 ± 0.80 0.90 ± 1.09 1-B 7.77 ± 6.15 2.05 ± 1.51 1.71 ± 1.79 1.43 ± 1.64 0.42 ± 0.60 1.25 ± 1.70 0.89 ± 0.94 2-A 9.50 ± 6.75 2.5 ± 1.50 1.59 ± 1.43 2.0 ± 1.92 0.50 ± 0.80 1.68 ± 2.17 1.23 ± 1.11 2-B & 3-A 11.40 ± 8.2 3.3 ± 2.16 1.90 ± 1.91 2.50 ± 2.54 0.90 ± 0.88 1.70 ± 1.25 1.10 ± 0.88 P-value 0.022 0.043 0.143 0.036 0.067 0.051 0.570 Course of disease Active progressive 13.07 ± 7.22 3.67 ± 1.76 2.67 ± 2.13 2.87 ± 2.10 0.87 ± 0.83 1.67 ± 1.83 1.33 ± 1.18 Partial remission 8.0 ± 5.92 2.18 ± 1.57 1.44 ± 1.51 1.66 ± 1.93 0.40 ± 0.60 1.28 ± 1.77 1.04 ± 0.95 Complete remission 6.27 ± 5.99 1.50 ± 1.50 1.27 ± 1.21 1.19 ± 1.63 0.31 ± 0.47 1.04 ± 1.48 0.96 ± 1.0 Recurrence 5.67 ± 4.08 2.0 ± 1.55 1.50 ± 1.64 1.0 ± 1.26 0.33 ± 0.52 0.50 ± 0.84 0.33 ± 0.82 P-value 0.006 <0.001 0.039 0.038 0.35 0.469 0.221 Groin lesion Yes 7.92 ± 5.87 2.18 ± 1.56 1.43 ± 1.40 1.67 ± 1.95 0.45± 0.61 1.24 ± 1.75 0.94 ± 0.85 No 7.98 ± 6.87 2.19 ± 1.74 1.63 ± 1.78 1.49 ± 1.75 0.46± 0.69 1.14 ± 1.63 1.03 ± 1.09 P-value 0.957 0.983 0.506 0.606 0.928 0.827 0.614 Head/neck lesion Yes 11.32 ± 8.0 2.90 ± 2.0 2.09 ± 1.85 2.36 ± 2.17 0.77 ± 0.92 2.00 ± 2.12 1.18 ± 0.94 No 7.13 ± 5.74 2.0 ± 1.52 1.41 ± 1.54 1.38 ± 1.70 0.38 ± 0.55 1.01 ± 1.50 1.05 ± 0.98 P-value 0.029 0.059 0.078 0.023 0.066 0.013 0.316 Topical Treatment Yes 7.41 ± 6.07 2.03 ± 1.53 1.44 ± 1.53 1.50 ± 1.80 0.42 ± 0.60 1.09 ± 1.63 0.93 ± 0.97 No 12.0 ± 6.11 3.50 ± 2.14 2.50 ± 2.07 2.25 ± 1.75 0.50 ± 0.53 2.0 ± 1.60 1.25 ± 1.04 P-value 0.042 0.013 0.069 0.260 0.718 0.131 0.372 Phototherapy Yes 7.23 ± 6.01 1.96 ± 1.58 1.49 ± 1.67 1.47 ± 1.82 0.45 ± 0.65 0.95 ± 1.51 0.92 ± 0.97 No 8.48 ± 5.83 2.45 ± 1.65 1.55 ± 1.36 1.65 ± 1.62 0.39 ± 0.50 1.48 ± 1.71 0.97 ± 0.95 P-value 0.330 0.153 0.871 0.636 0.618 0.113 0.809 Acitretin Yes 8.47 ± 6.75 2.28 ± 1.59 1.66 ± 1.84 1.72 ± 1.85 0.62 ± 0.79 1.22 ± 1.64 0.96 ± 1.03 No 7.51 ± 5.99 2.08 ± 0.67 1.51 ± 1.48 1.53 ± 0.81 0.34 ± 0.48 1.12 ± 1.66 0.92 ± 0.92 P-value 0.468 0.570 0.660 0.634 0.068 0.786 0.802 MTX Yes 9.80 ± 6.07 2.53 ± 1.46 2.20 ± 1.52 2.20 ± 2.18 0.27 ± 0.46 1.33 ± 1.76 1.27 ± 1.10 No 7.47 ± 6.20 2.08 ± 1.67 1.44 ± 1.59 1.49 ± 1.74 0.46 ± 0.62 1.12 ± 1.63 0.88 ± 0.92 P-value 0.179 0.323 0.089 0.162 0.263 0.648 0.144 Original Article | Dermatol Pract Concept. 2025;15(3):5361 7 measured by the DLQI subscales, along with “general health,” “environmental,” and “psychological” perceptions evaluated through the WHOQOL-BREF scoring system. An interesting finding was that patients with longer disease duration and those receiving topical treatments reported a better QoL. In contrast to earlier research by Molloy, Sampogna, and Chalaka, this study revealed that the extent of QoL im- pairment experienced by patients was not significantly af- fected by sex or sociodemographic factors [6, 20, 21]. This observation aligns with a study conducted on 121 Greek was in agreement with mean DLQI scores of 6.3 ±6.7, and 12±8 reported by a study describing a diverse population of patients with MF [18] and 5.83±4.92 by an Austrian multi- center study [19]. Overall, the key findings indicated that advanced stage dis- ease, active uncontrolled disease, a higher mSWAT, lesion on the head/neck, higher educational level, and treatment involv- ing interferon or gemcitabine monotherapy negatively affected QoL across various domains. The domains most significantly impacted included “leisure” and “feelings and symptoms” as DLQI subscales parameters Total Symptoms and feelings Daily activities Leisure Work and school Personal relationships Treatment Interferon Yes 9.65 ± 5.42 2.57 ± 1.31 1.52 ± 1.38 2.26 ± 1.94 0.52 ± 0.51 1.78 ± 2.0 1.0 ± 0.85 No 7.28 ± 6.35 2.02 ± 1.71 1.56 ± 1.66 1.40 ± 1.75 0.40 ± 0.63 0.98 ± 1.50 0.91 ± 0.98 P-value 0.106 0.164 0.917 0.045 0.404 0.037 0.706 Gemcitabine monotherapy Yes 11.75 ± 6.60 3.75 ± 1.71 2.50 ± 1.29 2.0 ± 1.83 0.75 ± 0.50 1.75 ± 2.06 1.00 ± 0.82 No 7.64 ± 6.18 2.08 ± 1.62 1.51 ± 1.60 1.57 ± 1.82 0.42 ± 0.60 1.13 ± 1.64 0.93 ± 0.96 P-value 0.196 0.046 0.227 0.648 0.279 0.462 0.887 Table 3. Association between DLQI dimension scores and patients’ clinical characteristics. (continued) Table 4. Association between FDLQI and Patients’ Clinical Data. Parameters FDLQI Total (mean ± SD) Pearson correlation P-value Disease duration - -0.265 0.008 MSWAT - 0.160 0.126 Disease stage 0.494 1-A 7.43 ± 6.74 - 1-B 8.34 ± 7.04 - 2-A 9.48 ± 7.96 - 2-B & 3-A 8.33 ± 2.78 - Course of disease 0.020 Active 14.38 ± 10.21 - Partial remission 9.14 ± 6.7 - Complete remission 6.14 ± 6.29 - Recurrence 8.40 ± 7.92 - Groin lesion 0.725 Yes 9.06 ± 6.20 - No 8.55 ± 8.19 - Head/neck lesion 0.003 Yes 12.95 ± 7.82 - No 7.66 ± 6.73 - Interferon 0.034 Yes 11.14 ± 7.19 - No 7.59 ± 6.65 - 8 Original Article | Dermatol Pract Concept. 2025;15(3):5361 Table 5. Association between WHOQOL-BREF Dimension Scores between Case and Control groups. Case (mean ± SD) Control (mean ± SD) p-value WHOQOL Total 90.02 ± 15.34 96.16 ± 13.78 0.001 WHOQOL Physical 59.27 ± 23.37 63.42 ± 16.61 0.110 WHOQOL Psychological 60.66 ± 16.72 70.80 ± 14.42 <0.001 WHOQOL Social relationship 62.99 ± 18.96 66.93 ± 17.83 0.099 WHOQOL Environmental 63.69 ± 16.17 68.14 ± 15.94 0.045 WHOQOL General health 60.62 ± 17.93 69.67 ± 18.41 <0.001 Figure 3. Percentage of answers to each individual item of FDLQI by family caregivers. Table 6. Correlation between the Total Scores Obtained from DLQI, FDLQI, and WHOQOL-BREF Questionnaires. FDLQI Total WHOQOL Total DLQI Total DLQI Total Pearson correlation 0.595 -0.462 p-value <0.001 <0.001 WHOQOL Total Pearson correlation -0.460 -0.462 p-value <0.001 <0.001 FDLQI Total Pearson correlation -0.460 0.595 p-value <0.001 <0.001 MF patients [22] and findings from two studies involving 300 Iranian patients [23, 24]. This might be partially at- tributed to cultural practices, such as specific clothing choices (hijab) among Iranian women that obscure skin dis- eases and disfigurements. Further analysis indicated that patients with head/neck lesions faced greater challenges, emphasizing the detrimen- tal effects of facial lesions and alopecia, thus underscoring the need for timely and possibly more intensive systemic therapies for these individuals. Interestingly, despite 43.4% Original Article | Dermatol Pract Concept. 2025;15(3):5361 9 Furthermore, when assessed using the WHOQOL-BREF tool, changes in QoL among our patients were less favor- able compared to healthy individuals; they exhibited worse scores in psychological, environmental, and general health aspects. It has been noted that patients with MF generally have a reduced QoL compared to those with Hodgkin and non-Hodgkin lymphoma, with skin manifestations contrib- uting significantly to these diminished scores [24]. Certain domains within our study remained unaffected, including “daily activities” (except in those suffering from active uncontrolled disease), “work and school”, and “treat- ment” in DLQI, as well as “physical” and “social relation- ship” dimensions in WHOQOL-BREF. This indicates that our patients experienced intense distress primarily in the emotional and psychological domains, which should be con- sidered within MF management guidelines. Conclusion This study uniquely examined the impact of MF and its treatments on specific QoL domains, providing a more gran- ular understanding of the patient experience. Furthermore, we extended our analysis to include the QoL of family care- givers, offering a more comprehensive perspective. The intricate relationship between treatment, QoL, and psychological well-being underlines the need for holistic ap- proaches in addressing the complexities encountered in MF patients’ care. Consistent with our findings and prior research, we ad- vocate for the routine assessment of QoL in MF patients, both before and after initiating any therapy that may impact their daily lives and those of their families. Given the signifi- cant distress experienced upon diagnosis, particularly in the first year, interventions aimed at managing expectations and enhancing coping strategies are crucial. Our findings also highlight the negative impact of a pa- tient’s illness on the QoL of their family caregivers, under- scoring the need for future research into effective support strategies for these individuals. Finally, the development of a validated, standardized, and disease-specific QoL instrument for CTCL and MF would facilitate more robust comparisons across studies. Limitations The present study included all patients referring to our clinic, not just the newly diagnosed ones, and although it had the benefit of considering the effect of treatment on patient’s QoL, some of the participants were in partial or complete remis- sion. Another limitation was our decision not to use cancer- related questionnaires as an instrument; by using DLQI and WHOQOL-BREF, we focused only on cutaneous symptoms, not considering cancer-related ones. This was because we of patients exhibiting groin lesions, their QoL was compara- ble to patients with lesions in other body areas, suggesting that sexual embarrassment might not be as pronounced in this study compared to the findings of Shinohara et al. [25]. Moreover, a related study conducted in Isfahan from 2017 to 2019 utilizing the SF-36 questionnaire noted that advanced disease stages, longer duration, and lesions in sun-exposed areas correlated with lower QoL [24]. Our find- ing that patients with longer disease duration reported a bet- ter QoL deviates from this study while aligning with recent observations by Ottevanger [26] and could reflect a coping mechanism developed over time in response to living with a chronic disease, evolving their perception of illness. Notably, patients with higher educational backgrounds experienced poorer QoL, which diverges from findings from Nourmo- hammadpour et al. on a smaller cohort of patients [23] and from the study by Porkert [27]. This discrepancy might be related to increased access to information regarding the disease, heightened awareness about its seriousness, and growing concerns regarding its progression. Although we expected the treatment response to be linked to an improved QoL, notably interferon and gem- citabine worsened QoL scores despite objective disease re- sponse. Interferon therapy negatively influenced the leisure and personal relationships domain of DLQI as many pa- tients experienced flu-like symptoms of fever, chills, fatigue, and arthralgia with an injection every other day lasting for 48 hours. This situation became particularly distressing during the COVID-19 pandemic, as many symptoms were mistakenly attributed to coronavirus disease. Interestingly, our findings indicated that the use of topical treatments, es- pecially topical corticosteroids provided at our center, led to a notable improvement in QoL. Patients who utilized these treatments experienced a reduction in symptoms such as redness, scaling, roughness, and itchiness, resulting in sig- nificantly improved total DLQI and symptoms and feeling domain scores. Additionally, FDLQI score averaged 8.44 ± 6.93, with a range of 0–24 for relatives of affected patients, with extra expenditures being particularly bothersome and highlighting the need for financial support. The study unveiled a nota- bly worse FDLQI score in cases involving newly identified active disease and in those located in the head/neck area. This aligns with earlier qualitative research involving seven patients with erythrodermic MF, highlighting the shocking and upsetting nature of the diagnosis for both patients and their families [28]. Comparisons with other studies, such as the one by Bin Saif et al. involving vitiligo patients’ families (n=129), which reported a mean FDLQI of 10.3 [29], and a study by Sampogna on families of epidermolysis bullosa patients which yielded a mean score of 9.8 [30], suggest that the deteriorating impact on family members of MF patients is similarly significant. 10 Original Article | Dermatol Pract Concept. 2025;15(3):5361 Br J Dermatol. 2007;156(3):528-38. DOI: 10.1111/j.1365-2133 .2006.07617.x. PMID: 17300244. 13. Safizadeh H, Nakhaee N, Shamsi-Meymandi S, Pourdamghan N, Basra MK. 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PMID: 18366715. 17. Nedjat S, Montazeri A, Holakouie K, Mohammad K, Majdzadeh R. Psychometric properties of the Iranian interview-administered version of the World Health Organization’s Quality of Life Ques- tionnaire (WHOQOL-BREF): a population-based study.  BMC Health Serv Res. 2008;8:61. DOI:10.1186/1472-6963-8-61. 18. Ottevanger R, van Beugen S, Evers AWM, Willemze R, Vermeer MH, Quint KD. Quality of life in patients with Myco- sis Fungoides and Sézary Syndrome: a systematic review of the literature. J Eur Acad Dermatol Venereol. 2021;35(12):2377-87. DOI: 10.1111/jdv.17570. PMID: 34331819. 19. Graier T, Fink-Puches R, Porkert S, Lang R, Pöchlauer S, Ratzinger G, et al. Quality of Life, Anxiety, and Depression in Pa- tients With Early-Stage Mycosis Fungoides and the Effect of Oral Psoralen Plus UV-A (PUVA) Photochemotherapy on it. Front Med (Lausanne). 2020;7:330. DOI: 10.3389/fmed.2020.00330. PMID: 32850876. 20. 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