Nasimi Maryam, Abedini Robabeh, Fakour Yousef, Shahabi Shideh, Kalantari Yasamin, Etesami Ifa
Department of Dermatology, Razi Hospital, Tehran University of Medical Sciences, Tehran, Iran.
Deputy of Research, MOH of Iran, Ministry of health, Tehran, Iran.
Dermatol Pract Concept. 2022 Oct 1;12(4):e2022183. doi: 10.5826/dpc.1204a183. eCollection 2022 Nov.
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.
Patients with diagnosed MF were asked to fill the Illness Perception Questionnaire-Revised (IPQ-R) once before education and once 3 months later.
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, most 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 < 0.001). This change was more observed in men (P = 0.03), those with less disease duration, and those treated with phototherapy.
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.
患者自身的信念对疾病管理很重要，而很少有研究评估蕈样肉芽肿（MF）患者的疾病认知。
在此，我们旨在确定对MF患者进行教育对其疾病认知的影响。
已确诊MF的患者在接受教育前填写一次修订后的疾病认知问卷（IPQ-R），3个月后再填写一次。
共纳入55例患者，其中41例男性，14例女性，平均年龄为45.5±13.9岁。关于主要病因，大多数患者认为是焦虑（91%）。教育后，对疾病病因最显著的信念改变是免疫系统功能障碍，改变率为26%，在教育程度较高、病程较短和MF分期较低的患者中更为明显。关于最常见的临床表现，大多数患者提到红斑（86%）。教育后，症状认知方面最大的变化与淋巴结病有关（32%），这与病程较短以及接受光疗的患者显著相关。教育前，关于疾病慢性程度的平均认知得分为23.67±3.549，增加到27.71±1.66（P<0.001）。这种变化在男性患者（P=0.03）、病程较短的患者以及接受光疗的患者中更为明显。
总体而言，MF患者对自身疾病持乐观态度，对他们进行教育能积极改善其疾病认知。教育程度较高和疾病分期较低的患者在疾病认知的各个方面表现出更显著的变化。因此，建议对教育程度较低的患者尽早进行教育。
