Dermatology: Practical and Conceptual Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 1 Evaluating the Perception of Mycosis Fungoides Patients About Their Disease Before and After Educating Them Maryam Nasimi1, Robabeh Abedini1, Yousef Fakour 2, Shideh Shahabi1, Yasamin Kalantari1, Ifa Etesami1 1 Department of Dermatology, Razi Hospital, Tehran University of Medical Sciences, Tehran, Iran 2 Deputy of Research, MOH of Iran, Ministry of health, Tehran, Iran Key words: Mycosis Fungoides, illness perception, Illness Perception Questionnaire-Revised, cutaneous T-cell lymphomas Citation: Nasimi M, Abedini R, Fakour Y, Shahabi S, Kalantari Y, Etesami I. Evaluating the perception of Mycosis Fungoides patients about their disease before and after educating them. Dermatol Pract Concept. 2022;12(4):e2022183. DOI: https://doi.org/10.5826/dpc.1204a183 Accepted: January 31, 2022; Published: October 2022 Copyright: ©2022 Nasimi 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: Ifa Etesami, Department of Dermatology, Razi Hospital, Vahdat-e- eslami square, Tehran University of Medical Sciences, Tehran, Iran, 1199663911, fax number: 021 55634461 E-mail: Ifa.etesami@gmail.com Introduction: Patient-held beliefs are important for disease management and few studies have evalu- ated illness perception of Mycosis Fungoides (MF) patients. Objectives: 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, 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. ABSTRACT 2 Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 Introduction Mycosis Fungoides (MF) is the most common type of cutane- ous T-cell lymphomas (CTCL). The annual incidence of MF is estimated at approximately 6:1,000,000 [1-3]. The common age of onset is 55-60 years, and the prevalence of the disease in men is reported to be 2 times higher than in women [2-4]. The most common clinical manifestations of MF are slowly progressive patches and plaques on the trunk that might be scaly or pruritic [5,6]. Due to the long course of the disease, patients with MF will experience annoying symptoms such as pain and itch for a considerable period of time, and their skin lesions may lead to social anxiety, embarrassment, and isolation [7]. Also, cur- rently available treatments do not cause long-lasting remis- sion of the disease which can have financial, emotional, and functional burdens for patients [8]. The concept of illness perception is based on Leventhal self-regulatory model and deals with the relationship between the nature of the disease, the patient concern about the disease, coping processes, and health outcomes [9,10]. Patient-held be- liefs are very important for the clinical management of their disease. Also, it has been proved that acquiring more knowl- edge about the disease is associated with a better understand- ing of the illness and more personal and treatment control [11]. In previous studies on MF, patients illness perception was assessed in a one-time examination or in two-time assess- ments without any educational intervention regarding the disease between the two evaluations. Hence, the data in this area is lacking. Objectives Since MF patient interpretation and perception can affect different aspects of their lives, this study aimed to determine the effect of educating MF patients on their perception of their disease. Methods Participants, Questionnaire, and Data Collection An analytical, cross-sectional study was conducted in Razi dermatology hospital, Tehran, Iran from March 2020 to July 2020. The study was approved by the ethical commit- tee of Tehran University of Medical Sciences (IR.TUMS. MEDICINE.REC.1399.266). Information about the study was given to all participants and each participant signed a form of consent for taking part in our study. Sixty patients with MF diagnosed based on both clinical and histopathological studies aged between 19 and 74 years were enrolled in the study. A checklist including demographic and clinical char- acteristics of participants was filled out for each patient. Afterward, the patients were asked to fill the Illness Percep- tion Questionnaire-Revised (IPQ-R) once before educating them on their disease characteristics and once 3 months after the education. The given education included patient-oriented information about MF etiology, prevalence, clinical manifes- tations, diagnosis, treatment, and the prognosis given in the format of an educational catalog. The educational material was first explained to all patients by a dermatologist and then given to them for further reading. Of 60 participants who completed the IPQ-R questionnaire in the first assessment, 5 did not complete the questionnaire in the second round. The IPQ-R had been previously translated to the Persian language and its validity and reliability were confirmed [12]. The IPQ-R evaluates patients’ perspectives across seven sub- scales: timeline acute/chronic, timeline-cyclical, consequences, personal control, treatment control, illness coherence, and emotional representations. Moreover, a checklist of clinical symptoms was shown to patients and they were asked to choose the most important factors causing their disease from a checklist of possible etiologic factors (supplementary file 1). Data Analysis Statistical analysis was performed by using IBM SPSS Statistics 26. Frequency and percentage were reported for qualitative variables, and mean and standard deviation for quantitative variables. To compare the mean scores between discrete inde- pendent variables, independent T-test and one-way Anova test was used. Also, the Pearson correlation coefficient was used to evaluate the correlation between continuous variables. A P of less than 0.05 was considered as significant. Results Sociodemographic Characteristics A total of fifty-five patients, 41 (74.5%) men and 14 (25.5%) women, with the mean age of 45.5 ± 13.9 years (range 19-74) were enrolled in the study. The demographic data are Conclusions: 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. Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 3 shown in Table 1. Considering the stage of the disease, the most prevalent stages among 55 patients were stage IA in 18 (32.7%) and stage IB in 14 (25.5%), respectively (Table 1). Beliefs About the Cause of the Disease Before educating the patients, the most common etiologic factors associated with their disease based on patients be- liefs were stress and anxiety (91%), familial worries and problems (82%), and emotional states (76%). While after educating the patients, the most prevalent etiologic factors were stress and anxiety (94%), familial worries (83%), and immune system dysfunction (73%). After educating the pa- tients, the most significant change in the mean score of per- ception about the disease etiology was related to immune system dysfunction (26%), smoking and drug abuse (20%), and hereditary factors. This change was reported more in patients with higher educational levels, lower stages of the disease, and shorter illness duration. Beliefs About Illness Coherence Before training, the achieved score about patients illness co- herence was 13.82 ± 3.65 and after the training, this score was 17.80 ± 2.81 (range 5-25). This proves that most pa- tients had an acceptable knowledge about their disease and after the training, their knowledge improved (P < 0.001). After educating the patients, the educational level had a positive relationship with illness coherence (P < 0.001) and with the changes in patients’ beliefs about illness coherence (P = 0.019). Also, there was a negative relationship between pa- tients age and their beliefs about illness coherence (P = 0.004). Beliefs About the Symptoms Before educating the patients, the most common reported symptoms were erythema (86%), pruritus (75%), and scal- ing (68%). In the second assessment, the first three common symptoms were again erythema (100%), pruritus (92%), and scaling (84%), but they were different from those in Table 1. Sociodemographic characteristics of the patients. Characteristic Age, years, mean ± SD 45.5 ± 13.9 Gender, N (%) male 41 (74.5%) female 14 (25.5%) Marital status, N (%) single 16 (29.1%) married 39 (70.9%) Education level, N (%) under high school diploma 20 (36.4%) high school diploma and associate degree 14 (25.5%) bachelor and masterdegree 17 (30.9%) doctorate and more 4 (7.3%) Duration of the disease, N (%) less than 2 years 20 (36.4%) 2-) years 23 (41.81%) 4-6 years 6 (10.90%) 6-8 years 4 (7.27%) 8-10 years 2 (3.63%) Stage of the disease, N (%) Stage IA 18 (32.7%) Stage IB 14 (25.5%) Stage IIA 7 (12.7%) Stage IIB 9 (16.4%) Stage IIIA 4 (7.3%) Stage IVA 3 (5.5%) Skin lesions, N (%) patch 23 (41.8%) plaque 18 (32.7%) cutaneous tumor 10 (18.2%) generalized erythema 4 (7.3%) Palpable lymph nodes, N (%) no 37 (67.3%) yes 18 (32.7%) Type of treatment, N (%) phototherapy 39 (70.9%) phototherapy with additional treatment 16 (29.1%) 4 Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 about the negative consequences of their illness and this atti- tude increased after the training (P = 0.005). After the train- ing, the stage of the disease had a positive relationship with beliefs about consequences (P > 0.001). Beliefs About Cure and Control The achieved score before and after the training was 20.69 ± 3.82 and 23.71 ± 2.85, respectively (P < 0.001) indicating that most of the patients were aware of their role in con- trolling their disease and this increased significantly after the training. Also, comparing the scores of their beliefs about treatment control before (18.60 ± 3.010) and after (22.45 ± 1.74) the training showed that most patients believed that treatment has an acceptable role in controlling the disease and improving the clinical symptoms (P < 0.001). Moreover, the educational level had a positive relationship with the changes in beliefs about treatment control (P = 0.011). Beliefs About Emotional Representation Before the training, most patients complained about the neg- ative effects of this illness on their emotions (22.35 ± 5.372). After the training, this amount increased significantly (24.00 ± 3.03;P = 0.004). There was a positive relationship between negative effects on emotions and stages of the disease after the training (P = 0.047). Moreover, after educating the pa- tients, as the educational level increased, negative effects on emotions enhanced (P = 0.025) (Table 2). Conclusions MF is the most common type of CTCL and can influence various aspects of patients lives. The results of our study the first assessment regarding their frequency. After instruct- ing the patients about their illness, the greatest change in terms of symptom perception was related to lymphadenop- athy (32%), pruritus (17%), and scaling (16%). The change in patients beliefs was more pronounced in patients with shorter disease duration, patients with patches and plaques type lesions, and those receiving phototherapy. Beliefs About Chronicity and Recurrence Before informing the patients, the mean perception score about the disease chronicity was 23.67 ± 3.549; after edu- cating the patients, this score was 27.71 ± 1.66 (range 6-30). The given scores show that most patients accepted that their disease is a chronic situation and this attitude increased sig- nificantly after training (P < 0.001). Regarding the disease timeline-cyclical, before and after training, the scores were 13.00 ± 2.40 (range 4-20) and 16.31 ± 1.78 (range 4-20), respectively. This shows that most patients consider their ill- ness as a recurrent situation and this belief increased signifi- cantly after the training (P < 0.001). Beliefs about the disease chronicity changed significantly after the training in both genders and it was more prominent in men (P = 0.03). After educating the patients, as the educational level increased, the awareness about the disease chronicity increased (P < 0.001). After the training, the stage of the disease had a positive re- lationship with beliefs about the chronicity of the disease (P < 0.001). Beliefs About Consequences Comparing the patients beliefs scores about their disease consequences between the first (18.53 ± 3.681) and the sec- ond (19.55± 3.66) assessments shows that patients knew Table 2. Perception modalities before and after educating the patients. Mean Number Standard Deviation P Timeline-Acute/Chronic 1 23.67 55 3.549 < 0.001 Timeline-Acute/Chronic 2 27.71 55 1.663 Consequences 1 18.53 55 3.681 0.005 Consequences 2 19.55 55 3.366 Personal control 1 20.69 55 3.829 < 0.001 Personal control 2 23.71 55 2.859 Treatment control 1 18.60 55 3.010 < 0.001 Treatment control 2 22.45 55 1.741 Illness coherence 1 13.82 55 3.657 < 0.001 Illness coherence 2 17.80 55 2.811 Timeline-cyclical 1 13.00 55 2.404 < 0.001 Timeline-cyclical 2 16.31 55 1.783 Emotional representation 1 22.35 55 5.372 0.004 Emotional representation 2 24.00 55 3.031 1= BEFORE; 2= AFTER. Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 5 physicians do not educate patients about it. After educat- ing them, the greatest change in the amount of knowledge about the MF clinical signs was observed in those with less disease duration, those who manifested patches or plaques and those who were being treated with phototherapy. This finding can be suggestive of the fact that educating those who are only treated with medications does not result in a desirable change in their illness perceptions in comparison to therapies such as phototherapy that requires more visits by the physicians. Our study shows that MF patients have an acceptable knowledge about the chronic and recurrent nature of their disease that significantly increases after training especially in men, those with less disease duration, and those who were only treated with phototherapy. As seen in Fortune et al that investigated 162 patients with psoriasis and observed that a vast majority of patients believed their disease was more likely to be chronic or recurrent, while only a short number of them considered their condition to be temporary [16]. Regarding the beliefs about the disease negative conse- quences, after the education, patients had a better under- standing of their diseases’ negative consequences, especially in those with higher stages of MF. MF has a severe negative emotional impact on patients that significantly increases after educating them. Although a negative perception about the consequences of illness is not the equivalent of having a psychiatric disorder, it may increase the likelihood of developing the disorder [16]. The greatest change regarding the negative emotional feelings toward the disease was observed in those with less disease duration and those who had lower stages of MF. Since the greatest changes in patients illness perception were observed among patients with less dis- ease duration and lower stages of the disease, it is important to educate patients in the early stages of their illness. Most of our patients believed that they have an im- portant role in controlling their illness that significantly improved after educating them. The greatest change in this belief was observed in those with higher educational levels. Notably, in Eder et al study, it was observed that patients had limited belief in personal control, but a strong belief in treatment control which was attributed to their sample con- sisting of patients with long disease duration [8].In general, MF patients hold favorable perspectives about their disease and educating them positively improves their views about their illness. Also, patients with higher educational levels and lower stages of the disease showed more significant changes in various aspects of illness perception. Hence, early edu- cation is recommended in patients with lower educational levels. More research on increasing MF patients understand- ing of their illness should be done, since correcting patients misconceptions is associated with increased follow-up and improved treatment outcomes. indicate that MF patients have an acceptable understand- ing of their disease, its causing factors, and clinical mani- festations associated with their disease which significantly increases after training them. The fact that patients have an acceptable perception of their illness has been confirmed in previous studies on vari- ous dermatologic diseases including vitiligo and skin cancers and is consistent with our study [13-15]. A study by Topal et al on 100 vitiligo patients using IPQ suggested that patients had good knowledge about their disease and were highly aware of the etiologic factors [14]. Despite the low preva- lence of MF, the patients in our study had a good knowledge about their disease which significantly increased after edu- cating them. The opposite results were observed in a study done by Eder et al that believed patients with CTCL have a poor understanding of their disease. This poor knowledge was attributed to the low prevalence of the disease and the unknown cause of CTCL [8]. Our study showed that educating MF patients cause sig- nificant changes in beliefs about different factors such as the etiologic factors, clinical manifestations, disease chronicity and recurrency, emotional impacts, illness consequences, personal control, and treatment control. These changes in- dicate that educating MF patients help them to have a better knowledge about their illness. Generally, changes in patients perception about the clinical manifestations, consequences, and emotional representations were more notable than other variables after the education. Regarding the main etiologic factor, the results of our study showed that most patients with MF cited stress and anxiety as the main causing factor for their illness. The same results were also found in Firooz et al study which assessed 80 vitiligo patients using IPQ and observed that a total of 62.5% of patients believed that stress was a major factor in causing their disease [13]. After the education, the greatest change in the knowledge of patients in etiology was observed in patients with higher educational levels, shorter disease du- ration, and lower stages of MF. This indicates that educating MF patients as early as possible may have a better influence on patients perception of their disease. It is worth mention- ing that after the education, patients with lower educational levels did not show significant changes regarding the etio- logic factors which highlight the point that more efforts should be made in educating these groups of patients and different means of education rather than a single brochure should be considered for them. In terms of clinical manifestations, most of our patients mentioned erythema, pruritus, and scaling as the most prev- alent clinical manifestations. After instructing the patients about their illness, the greatest change in terms of symptom perception was related to lymphadenopathy meaning that lymphadenopathy might not be noticed by patients if the 6 Original Article | Dermatol Pract Concept. 2022;12(4):e2022183 References 1. Criscione VD, Weinstock MA. Incidence of cutaneous T-cell lymphoma in the United States, 1973-2002. Arch Dermatol. 2007;143(7):854-859. DOI: 10.1001/archderm.143.7.854. PMID: 17638728. 2. Sant M, Allemani C, Tereanu C, et al. Incidence of hematologic malignancies in Europe by morphologic subtype: results of the HAEMACARE project. Blood. 2010;116(19):3724-3734. DOI: 10.1182/blood-2010-05-282632. PMID: 20664057. 3. Korgavkar K, Xiong M, Weinstock M. Changing incidence trends of cutaneous T-cell lymphoma. JAMA Dermatol. 2013;149(11):1295- 1299. 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