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

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

Authors

  • Ladan Dastgheib Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 2. Department of Dermatology, Shiraz University of Medical Sciences, Shiraz, Iran https://orcid.org/0000-0002-2117-9375
  • Dorsa Shekouh Department of MPH, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran https://orcid.org/0000-0001-7340-4805
  • Mozhdeh Sepaskhah Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 2. Department of Dermatology, Shiraz University of Medical Sciences, Shiraz, Iran https://orcid.org/0000-0002-8773-0019
  • Alireza Salehi Department of MPH, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran

Keywords:

Cutaneous T-cell lymphoma, Mycosis fungoides, Quality of life, Family dermatology life quality index, Family burden

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 MF, the most common variant of CTCL and 1 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).

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.

References

Trautinger F, Eder J, Assaf C, Bagot M, Cozzio A, Dummer R, et al. European Organisation for Research and Treatment of Cancer consensus recommendations for the treatment of mycosis fungoides/Sézary syndrome - Update 2017. Eur J Cancer. 2017;77:57-74. DOI: 10.1016/j.ejca.2017.02.027. PMID: 28365528.

Teras LR, DeSantis CE, Cerhan JR, Morton LM, Jemal A, Flowers CR. 2016 US lymphoid malignancy statistics by World Health Organization subtypes. CA Cancer J Clin. 2016;66(6):443-59. DOI:10.3322/caac.21357. PMID: 27618563.

Miyashiro D, Sanches JA. Mycosis fungoides and Sézary syndrome: clinical presentation, diagnosis, staging, and therapeutic management. Front Oncol. 2023;13:1141108. DOI:10.3389/fonc.2023.1141108. PMID: 37124514.

Eder J, Kammerstätter M, Erhart F, Mairhofer-Muri D, Trautinger F. Illness Perception in Primary Cutaneous T-cell Lymphomas: What Patients Believe About Their Disease. Acta Derm Venereol. 2016;96(3):381-5. DOI:10.2340/00015555-2245. PMID: 26392387.

Demierre MF, Gan S, Jones J, Miller DR. Significant impact of cutaneous T-cell lymphoma on patients' quality of life: results of a 2005 National Cutaneous Lymphoma Foundation Survey. Cancer. 2006;107(10):2504-11. DOI:10.1002/cncr.22252. PMID: 17048251.

Sampogna F, Frontani M, Baliva G, Lombardo GA, Alvetreti G, Di Pietro C, et al. Quality of life and psychological distress in patients with cutaneous lymphoma. Br J Dermatol. 2009;160(4):815-22. DOI: 10.1111/j.1365-2133.2008.08992.x. PMID: 19120325.

Duvic M, Kuzel TM, Olsen EA, Martin AG, Foss FM, Kim YH, et al. Quality-of-life improvements in cutaneous T-cell lymphoma patients treated with denileukin diftitox (ONTAK). Clin Lymphoma. 2002;2(4):222-8. DOI: 10.3816/clm.2002.n.003. PMID: 11970761.

Horwitz SM, Scarisbrick JJ, Dummer R, et al. Randomized phase 3 ALCANZA study of brentuximab vedotin vs physician's choice in cutaneous T-cell lymphoma: final data [published correction appears in Blood Adv. 2024 May 14;8(9):2243. DOI: 10.1182/bloodadvances.2024012976.]. Blood Adv. 2021;5(23):5098-5106. doi:10.1182/bloodadvances.2021004710.

Basra MK, Finlay AY. The family impact of skin diseases: the Greater Patient concept. Br J Dermatol. 2007;156(5):929-937. doi:10.1111/j.1365-2133.2007.07794.x.

Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210-6. DOI: 10.1111/j.1365-2230. 1994.tb01167.x. PMID: 8033378.

Aghaei S, Sodaifi M, Jafari P, Mazharinia N, Finlay A. DLQI scores in vitiligo: Reliability and validity of the Persian version. BMC dermatology. 2004;4:8. DOI: 10.1186/1471-5945-4-8.

Basra MK, Sue-Ho R, Finlay AY. The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease. Br J Dermatol. 2007;156(3):528-38. DOI: 10.1111/j.1365-2133.2006.07617.x. PMID: 17300244.

Safizadeh H, Nakhaee N, Shamsi-Meymandi S, Pourdamghan N, Basra MK. Preliminary reliability and validity of Persian version of the Family Dermatology Life Quality Index (FDLQI). Qual Life Res. 2014;23(3):869-75. DOI: 10.1007/s11136-013-0514-6. PMID: 24052325.

Vahedi S. World Health Organization Quality-of-Life Scale (WHOQOL-BREF): Analyses of Their Item Response Theory Properties Based on the Graded Responses Model. Iran J Psychiatry. 2010;5(4):140-53. PMID: 22952508.

Ilić I, Šipetić S, Grujičić J, Mačužić I, Kocić S, Ilić M. Psychometric Properties of the World Health Organization's Quality of Life (WHOQOL-BREF) Questionnaire in Medical Students. Medicina (Kaunas). 2019;55(12). DOI: 10.3390/medicina55120772. PMID: 31817180.

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 Questionnaire (WHOQOL-BREF): a population-based study. BMC Health Serv Res. 2008;8:61. DOI: 10.1186/1472-6963-8-61. PMID: 18366715.

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 Questionnaire (WHOQOL-BREF): a population-based study. BMC Health Serv Res. 2008;8:61. DOI:10.1186/1472-6963-8-61.

Ottevanger R, van Beugen S, Evers AWM, Willemze R, Vermeer MH, Quint KD. Quality of life in patients with Mycosis 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.

Graier T, Fink-Puches R, Porkert S, Lang R, Pöchlauer S, Ratzinger G, et al. Quality of Life, Anxiety, and Depression in Patients 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.

Molloy K, Jonak C, Woei AJF, Guenova E, Busschots AM, Bervoets A, et al. Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study. Br J Dermatol. 2020;182(3):770-9. DOI: 10.1111/bjd.18089. PMID: 31049926.

Chalaka CW, Mahurin HM, Tarabadkar E, Hippe DS, Loggers ET, Shinohara MM. Gender disparities in health-related quality of life (HRQoL) in patients with cutaneous T-cell lymphoma. Int J Womens Dermatol. 2023;9(2):e085. DOI: 10.1097/jw9.0000000000000085. PMID: 37284299.

Georgiou E, Nikolaou V, Pikou O, Papathemeli D, Haidich AB, Koletsa T, et al. Quality of life in Greek patients with mycosis fungoides: a cross-sectional study. Eur J Dermatol. 2023;33(4):433-5. DOI: 10.1684/ejd.2023.4540. PMID: 37823498.

Nourmohammadpour P, Nasimi M, Aryanian Z, Goodarzi A, Jahazi R, Etesami I. Characteristics associated with quality of life in the early stages of Mycosis Fungoides. Caspian J Intern Med. 2023;14(1):16-22. DOI: 10.22088/cjim.14.1.16. PMID: 36741488.

Farahnaz Fatemi N, Mohaghegh F, Farshad R, Fatemeh M, Neda A. Evaluation of quality of life in patients with Mycosis fungoides in Isfahan in 2017-2019. Journal of Pakistan Association of Dermatologists. 2023;33(1):59-64.

Shinohara MM, Mahurin HM, Tarabadkar E, Hippe DS, Lachance K, Kim EJ, et al. Health-related quality of life in cutaneous T-cell lymphoma: A cross-sectional survey study. Skin Health Dis. 2021;1(3):e45. DOI: 10.1002/ski2.45. PMID: 35663135.

Ottevanger R, van Beugen S, Kersten JM, Evers AWM, Vermeer MH, Willemze R, et al. Evaluation of Quality of Life and Treatment Satisfaction in Newly Diagnosed Cutaneous T-Cell Lymphoma Patients. Cancers (Basel). 2024;16(5). DOI: 10.3390/cancers16050937. PMID: 38473299.

Porkert S, Lehner-Baumgartner E, Valencak J, Knobler R, Riedl E, Jonak C. Patients' Illness Perception as a Tool to Improve Individual Disease Management in Primary Cutaneous Lymphomas. Acta Derm Venereol. 2018;98(2):240-5. DOI: 10.2340/00015555-2819. PMID: 29048099.

Ottevanger R, Feenstra JS, van Vliet LM, van Beugen S, Evers AWM, Kennedy C, et al. Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T-cell lymphoma on quality of life. Skin Health Dis. 2023;3(6):e300. DOI: 10.1002/ski2.300. PMID: 38047257.

Bin Saif GA, Al-Balbeesi AO, Binshabaib R, Alsaad D, Kwatra SG, Alzolibani AA, et al. Quality of life in family members of vitiligo patients: a questionnaire study in Saudi Arabia. Am J Clin Dermatol. 2013;14(6):489-95. DOI: 10.1007/s40257-013-0037-5. PMID: 23839260.

Sampogna F, Tabolli S, Di Pietro C, Castiglia D, Zambruno G, Abeni D. The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index. J Eur Acad Dermatol Venereol. 2013;27(9):1151-5. DOI: 10.1111/j.1468-3083.2012.04682.x. PMID: 22882670.

Downloads

Published

2025-07-31

How to Cite

1.
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:10.5826/dpc.1503a5361

Share