10.5826/dpc.1204a183
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 &lt;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.
text/xml
2160-9381
2226
en
Ifa Etesami
https://creativecommons.org/licenses/by-nc/4.0
Dermatology Practical & Conceptual
Cutaneous T-cell lymphomas
Evaluating the perception of Mycosis Fungoides patients about their disease before and after educating them
Text.Serial.Journal
https://dpcj.org/index.php/dpc
Original Article
2022-10-31
2021-12-07
2022-10-31
2022-12-02
e2022183
Dermatol Pract Concept
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 &lt;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.
Ifa Etesami
2022/10/31
10.5826/dpc.1204a183
e2022183
Department of  Dermatology, Razi Hospital, Tehran University of Medical Sciences, Tehran, Iran
2160-9381
Cutaneous T-cell lymphomas
en
e2022183
-201. https://doi.org/10.1016/s0190-9622(98)70074-x
Evaluating the perception of Mycosis Fungoides patients about their disease before and after educating them
https://dpcj.org/index.php/dpc/article/download/2226/1828
     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




  ABSTRACT             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.




Original Article | Dermatol Pract Concept. 2022;12(4):e2022183                                                                         1
                      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.




Introduction                                                        MEDICINE.REC.1399.266). Information about the study
                                                                    was given to all participants and each participant signed a
Mycosis Fungoides (MF) is the most common type of cutane-           form of consent for taking part in our study.
ous T-cell lymphomas (CTCL). The annual incidence of MF is             Sixty patients with MF diagnosed based on both clinical
estimated at approximately 6:1,000,000 [1-3]. The common            and histopathological studies aged between 19 and 74 years
age of onset is 55-60 years, and the prevalence of the disease      were enrolled in the study.
in men is reported to be 2 times higher than in women [2-4].           A checklist including demographic and clinical char-
    The most common clinical manifestations of MF are               acteristics of participants was filled out for each patient.
slowly progressive patches and plaques on the trunk that            ­Afterward, the patients were asked to fill the Illness Percep-
might be scaly or pruritic [5,6].                                   tion Questionnaire-Revised (IPQ-R) once before educating
    Due to the long course of the disease, patients with MF         them on their disease characteristics and once 3 months after
will experience annoying symptoms such as pain and itch for         the education. The given education included patient-oriented
a considerable period of time, and their skin lesions may lead      information about MF etiology, prevalence, clinical manifes-
to social anxiety, embarrassment, and isolation [7]. Also, cur-     tations, diagnosis, treatment, and the prognosis given in the
rently available treatments do not cause long-lasting remis-        format of an educational catalog. The educational material
sion of the disease which can have financial, emotional, and        was first explained to all patients by a dermatologist and then
functional burdens for patients [8].                                given to them for further reading. Of 60 participants who
    The concept of illness perception is based on Leventhal         completed the IPQ-R questionnaire in the first assessment,
self-regulatory model and deals with the relationship between       5 did not complete the questionnaire in the second round.
the nature of the disease, the patient concern about the disease,      The IPQ-R had been previously translated to the Persian
coping processes, and health outcomes [9,10]. Patient-held be-      language and its validity and reliability were confirmed [12].
liefs are very important for the clinical management of their       The IPQ-R evaluates patients’ perspectives across seven sub-
disease. Also, it has been proved that acquiring more knowl-        scales: timeline acute/chronic, timeline-cyclical, consequences,
edge about the disease is associated with a better understand-      personal control, treatment control, illness coherence, and
ing of the illness and more personal and treatment control [11].    emotional representations. Moreover, a checklist of clinical
    In previous studies on MF, patients illness perception was      symptoms was shown to patients and they were asked to
assessed in a one-time examination or in two-time assess-           choose the most important factors causing their disease from
ments without any educational intervention regarding the            a checklist of possible etiologic factors (supplementary file 1).
disease between the two evaluations. Hence, the data in this
area is lacking.                                                    Data Analysis
                                                                    Statistical analysis was performed by using IBM SPSS Statistics
Objectives                                                          26. Frequency and percentage were reported for qualitative
                                                                    variables, and mean and standard deviation for quantitative
Since MF patient interpretation and perception can affect           variables. To compare the mean scores between discrete inde-
different aspects of their lives, this study aimed to determine     pendent variables, independent T-test and one-way Anova test
the effect of educating MF patients on their perception of          was used. Also, the Pearson correlation coefficient was used to
their disease.                                                      evaluate the correlation between continuous variables. A P of
                                                                    less than 0.05 was considered as significant.

Methods
                                                                    Results
Participants, Questionnaire, and Data Collection
An analytical, cross-sectional study was conducted in Razi          Sociodemographic Characteristics
dermatology hospital, Tehran, Iran from March 2020 to               A total of fifty-five patients, 41 (74.5%) men and 14 (25.5%)
July 2020. The study was approved by the ethical commit-            women, with the mean age of 45.5 ± 13.9 years (range
tee of Tehran University of Medical Sciences (IR.TUMS.              19-74) were enrolled in the study. The demographic data are



2                                                                       Original Article | Dermatol Pract Concept. 2022;12(4):e2022183
                             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%)



shown in Table 1. Considering the stage of the disease, the           Beliefs About Illness Coherence
most prevalent stages among 55 patients were stage IA in 18           Before training, the achieved score about patients illness co-
(32.7%) and stage IB in 14 (25.5%), respectively (Table 1).           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-
Beliefs About the Cause of the Disease                                tients had an acceptable knowledge about their disease and
Before educating the patients, the most common etiologic              after the training, their knowledge improved (P < 0.001).
factors associated with their disease based on patients be-           After educating the patients, the educational level had a
liefs were stress and anxiety (91%), familial worries and             positive relationship with illness coherence (P < 0.001) and
problems (82%), and emotional states (76%). While after               with the changes in patients’ beliefs about illness coherence
educating the patients, the most prevalent etiologic factors          (P = 0.019). Also, there was a negative relationship between pa-
were stress and anxiety (94%), familial worries (83%), and            tients age and their beliefs about illness coherence (P = 0.004).
immune system dysfunction (73%). After educating the pa-
tients, the most significant change in the mean score of per-         Beliefs About the Symptoms
ception about the disease etiology was related to immune              Before educating the patients, the most common reported
system dysfunction (26%), smoking and drug abuse (20%),               symptoms were erythema (86%), pruritus (75%), and scal-
and hereditary factors. This change was reported more in              ing (68%). In the second assessment, the first three common
patients with higher educational levels, lower stages of the          symptoms were again erythema (100%), pruritus (92%),
disease, and shorter illness duration.                                and scaling (84%), but they were different from those in



Original Article | Dermatol Pract Concept. 2022;12(4):e2022183                                                                       3
the first assessment regarding their frequency. After instruct-     about the negative consequences of their illness and this atti-
ing the patients about their illness, the greatest change in        tude increased after the training (P = 0.005). After the train-
terms of symptom perception was related to lymphadenop-             ing, the stage of the disease had a positive relationship with
athy (32%), pruritus (17%), and scaling (16%). The change           beliefs about consequences (P > 0.001).
in patients beliefs was more pronounced in patients with
shorter disease duration, patients with patches and plaques         Beliefs About Cure and Control
type lesions, and those receiving phototherapy.                     The achieved score before and after the training was 20.69
                                                                    ± 3.82 and 23.71 ± 2.85, respectively (P < 0.001) indicating
Beliefs About Chronicity and Recurrence                             that most of the patients were aware of their role in con-
Before informing the patients, the mean perception score            trolling their disease and this increased significantly after the
about the disease chronicity was 23.67 ± 3.549; after edu-          training. Also, comparing the scores of their beliefs about
cating the patients, this score was 27.71 ± 1.66 (range 6-30).      treatment control before (18.60 ± 3.010) and after (22.45
The given scores show that most patients accepted that their        ± 1.74) the training showed that most patients believed that
disease is a chronic situation and this attitude increased sig-     treatment has an acceptable role in controlling the disease
nificantly after training (P < 0.001). Regarding the disease        and improving the clinical symptoms (P < 0.001). Moreover,
timeline-cyclical, before and after training, the scores were       the educational level had a positive relationship with the
13.00 ± 2.40 (range 4-20) and 16.31 ± 1.78 (range 4-20),            changes in beliefs about treatment control (P = 0.011).
respectively. This shows that most patients consider their ill-
ness as a recurrent situation and this belief increased signifi-    Beliefs About Emotional Representation
cantly after the training (P < 0.001). Beliefs about the disease    Before the training, most patients complained about the neg-
chronicity changed significantly after the training in both         ative effects of this illness on their emotions (22.35 ± 5.372).
genders and it was more prominent in men (P = 0.03). After          After the training, this amount increased significantly (24.00
educating the patients, as the educational level increased, the     ± 3.03;P = 0.004). There was a positive relationship between
awareness about the disease chronicity increased (P < 0.001).       negative effects on emotions and stages of the disease after
After the training, the stage of the disease had a positive re-     the training (P = 0.047). Moreover, after educating the pa-
lationship with beliefs about the chronicity of the disease         tients, as the educational level increased, negative effects on
(P < 0.001).                                                        emotions enhanced (P = 0.025) (Table 2).

Beliefs About Consequences
                                                                    Conclusions
Comparing the patients beliefs scores about their disease
consequences between the first (18.53 ± 3.681) and the sec-         MF is the most common type of CTCL and can influence
ond (19.55± 3.66) assessments shows that patients knew              various aspects of patients lives. The results of our study


                    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.



4                                                                         Original Article | Dermatol Pract Concept. 2022;12(4):e2022183
indicate that MF patients have an acceptable understand-          physicians do not educate patients about it. After educat-
ing of their disease, its causing factors, and clinical mani-     ing them, the greatest change in the amount of knowledge
festations associated with their disease which significantly      about the MF clinical signs was observed in those with less
increases after training them.                                    disease duration, those who manifested patches or plaques
    The fact that patients have an acceptable perception of       and those who were being treated with phototherapy. This
their illness has been confirmed in previous studies on vari-     finding can be suggestive of the fact that educating those
ous dermatologic diseases including vitiligo and skin cancers     who are only treated with medications does not result in a
and is consistent with our study [13-15]. A study by Topal et     desirable change in their illness perceptions in comparison to
al on 100 vitiligo patients using IPQ suggested that patients     therapies such as phototherapy that requires more visits by
had good knowledge about their disease and were highly            the physicians.
aware of the etiologic factors [14]. Despite the low preva-           Our study shows that MF patients have an acceptable
lence of MF, the patients in our study had a good knowledge       knowledge about the chronic and recurrent nature of their
about their disease which significantly increased after edu-      disease that significantly increases after training especially in
cating them. The opposite results were observed in a study        men, those with less disease duration, and those who were
done by Eder et al that believed patients with CTCL have a        only treated with phototherapy. As seen in Fortune et al that
poor understanding of their disease. This poor knowledge          investigated 162 patients with psoriasis and observed that
was attributed to the low prevalence of the disease and the       a vast majority of patients believed their disease was more
unknown cause of CTCL [8].                                        likely to be chronic or recurrent, while only a short number
    Our study showed that educating MF patients cause sig-        of them considered their condition to be temporary [16].
nificant changes in beliefs about different factors such as the       Regarding the beliefs about the disease negative conse-
etiologic factors, clinical manifestations, disease chronicity    quences, after the education, patients had a better under-
and recurrency, emotional impacts, illness consequences,          standing of their diseases’ negative consequences, especially
personal control, and treatment control. These changes in-        in those with higher stages of MF.
dicate that educating MF patients help them to have a better          MF has a severe negative emotional impact on patients
knowledge about their illness. Generally, changes in patients     that significantly increases after educating them. Although a
perception about the clinical manifestations, consequences,       negative perception about the consequences of illness is not the
and emotional representations were more notable than other        equivalent of having a psychiatric disorder, it may increase the
variables after the education.                                    likelihood of developing the disorder [16]. The greatest change
    Regarding the main etiologic factor, the results of our       regarding the negative emotional feelings toward the disease
study showed that most patients with MF cited stress and          was observed in those with less disease duration and those who
anxiety as the main causing factor for their illness. The same    had lower stages of MF. Since the greatest changes in patients
results were also found in Firooz et al study which assessed      illness perception were observed among patients with less dis-
80 vitiligo patients using IPQ and observed that a total of       ease duration and lower stages of the disease, it is important to
62.5% of patients believed that stress was a major factor in      educate patients in the early stages of their illness.
causing their disease [13]. After the education, the greatest         Most of our patients believed that they have an im-
change in the knowledge of patients in etiology was observed      portant role in controlling their illness that significantly
in patients with higher educational levels, shorter disease du-   improved after educating them. The greatest change in this
ration, and lower stages of MF. This indicates that educating     belief was observed in those with higher educational levels.
MF patients as early as possible may have a better influence      Notably, in Eder et al study, it was observed that patients
on patients perception of their disease. It is worth mention-     had limited belief in personal control, but a strong belief in
ing that after the education, patients with lower educational     treatment control which was attributed to their sample con-
levels did not show significant changes regarding the etio-       sisting of patients with long disease duration [8].In general,
logic factors which highlight the point that more efforts         MF patients hold favorable perspectives about their disease
should be made in educating these groups of patients and          and educating them positively improves their views about
different means of education rather than a single brochure        their illness. Also, patients with higher educational levels and
should be considered for them.                                    lower stages of the disease showed more significant changes
    In terms of clinical manifestations, most of our patients     in various aspects of illness perception. Hence, early edu-
mentioned erythema, pruritus, and scaling as the most prev-       cation is recommended in patients with lower educational
alent clinical manifestations. After instructing the patients     levels. More research on increasing MF patients understand-
about their illness, the greatest change in terms of symptom      ing of their illness should be done, since correcting patients
perception was related to lymphadenopathy meaning that            misconceptions is associated with increased follow-up and
lymphadenopathy might not be noticed by patients if the           improved treatment outcomes.



Original Article | Dermatol Pract Concept. 2022;12(4):e2022183                                                                   5
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