Evaluating the perception of Mycosis Fungoides patients about their disease before and after educating them
Keywords:
Mycosis Fungoides, Illness perception, Illness Perception Questionnaire-Revised, Cutaneous T-cell lymphomasAbstract
BACKGROUND:Patient-held beliefs are important for disease management and few studies have evaluated illness perception of Mycosis Fungoides (MF) patients. Here, we aimed to determine the effect of educating MF patients on their perception of their disease.
METHODS:Patients with diagnosed MF were asked to fill the Illness Perception Questionnaire-Revised (IPQ-R) once before education and once 3 months later.
RESULTS:Fifty-five patients, 41 men and 14 women, with a mean age of 45.5 ± 13.9 years were enrolled. Regarding the main etiologic factor, most patients cited anxiety (91%). After education, the most significant changed belief on disease etiology was immune system dysfunction and the change was twenty-six percent which was observed more in patients with higher educational levels, shorter disease duration, and lower MF stages. Regarding the most prevalent clinical manifestations, the majority of patients mentioned erythema (86%). After education, the greatest change in symptom perception was related to lymphadenopathy (32%) which was significantly associated with less disease duration and those treated with phototherapy. Before education, the mean perception score about the disease chronicity was 23.67 ± 3.549 that increased to 27.71 ± 1.66 (p-value <0.001). This change was more observed in men (p-value=0.03), those with less disease duration, and those treated with phototherapy.
CONCLUSION:Generally, MF patients hold favorable perspectives about their disease and educating them positively improves their illness perception. Patients with higher educational levels and lower stages of the disease showed more significant changes in various aspects of illness perception. Hence, early education is recommended in patients with lower educational levels.
References
Criscione VD, Weinstock MA. 2007. Incidence of cutaneous T-cell lymphoma in the United States, 1973–2002. Arch Dermatol; 143: 854. https://doi.org/10.1001/archderm.143.7.854
Sant M, Allemani C, Tereanu C, et al. 2010. Incidence of hematologic
malignancies in Europe by morphologic subtype: results of the
HAEMACARE project. Blood; 116: 3724. https://doi.org/10.1182/blood-2010-05-282632
Korgavkar K, Xiong M, Weinstock M. 2013. Changing incidence trends of
cutaneous T-cell lymphoma. JAMA Dermatol; 149: 1295. https://doi.org/10.1001/jamadermatol.2013.5526
Bradford PT, Devesa SS, Anderson WF, Toro JR. 2009. Cutaneous lymphoma incidence patterns in the United States: a population-based study of 3884 cases. Blood; 113: 5064. https://doi.org/10.1182/blood-2008-10-184168
Pimpinelli N, Olsen EA, Santucci M, et al. 2005. Defining early mycosis
fungoides. J AM Acad Dermatol; 53: 1053. https://doi.org/10.1016/j.jaad.2005.08.057
Kazakov DV, Burg G, Kempf W. 2004. Clinicopathological spectrum of mycosis fungoides. J Eur Acad Dermatol Venereol; 18: 397. https://doi.org/10.1111/j.1468-3083.2004.00937.x
Olsen E, Vonderheid E, Pimpinelli N, Willemze R, Kim Y, Knobler R, et al. 2007 Revisions to the staging and classification of mycosis fungoides and Sezary syndrome: a proposal of the International Society for Cutaneous
Lymphomas (ISCL) and the cutaneous lymphoma task force of the
European Organization of Research and Treatment of Cancer (EORTC).
Blood; 110: 1713–1722. https://doi.org/10.1182/blood-2007-03-055749
Eder J, Kammerstatter M, Erhart F, Mairhofer-Muri D, Trautinger F. 2016 Illness perception in primary cutaneous T-cell lymphomas: what patients believe about their disease. Acta Derm Venereol; 96: 381–385. https://doi.org/10.2340/00015555-2245
Leventhal H, Nerenz DR, Steele DS. 1984. Illness representations and coping with health threats. In: Baum A, Singer JE, editors. Handbook of
psychology and health New York: Erlbaum: p. 221–252.
Leventhal HBY, Brownlee S, Diefenbach M, Leventhal E, Patrick-Miller L,
Robitaille C. 1997. Illness representations: theoretical foundations. In: Petrie KJ, Weinman J, editors. Perceptions of health and illness: current research
and applications Amsterdam: Harwood Academic Publishers: p. 19–
Husson O, Thong MS, Mols F, Oerlemans S, Kaptein AA, van de Poll
Franse LV. 2013.Illness perceptions in cancer survivors: what is the role of
information provision? Psychooncol; 22: 490–498. https://doi.org/10.1002/pon.3042
Bazzazian S, Besharat MA. 2010. Reliability and validity of a Farsi version of the brief illness perception questionnaire. Procedia - Social and Behavioral Sciences;5:962-5. https://doi.org/10.1016/j.sbspro.2010.07.217
Firooz A, Bouzari N, Fallah N, Ghazisaidi B, Firoozabadi MR DY. 2004. What
patients with vitiligo believe about their condition? Int J Dermatol;
(11): 811-814. https://doi.org/10.1111/j.1365-4632.2004.02059.x
Topal IO, Duman H, Goncu OEK, Durmuscan M, Gungor S, Ulkumen PK. 2016. Knowledge, beliefs, and perceptions of Turkish vitiligo patients regarding their condition. An Bras Dermatol; 91(6): 770-775. https://doi.org/10.1590/abd1806-4841.20165060
Abedini R, Nasimi M, Nourmohammad Pour P, Etesami I, Al-Asiri S, Tohidinik HR. Skin Cancer Awareness and Sun Protection Behavior Before and Following Treatment Among Skin Cancer-Treated Patients. J Cancer Educ. 2019 Apr;34(2):285-290. doi: 10.1007/s13187-017-1299-z.
Fortune DG, Richards HL, Main CJ, Griffiths CE. 1998.What patients with psoriasis believe about their condition? J Am Acad Dermatol; 39(2):
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