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Knowledge, attitude and self-care practices among pemphigus vulgaris patients – A cross-sectional study
*Corresponding author: Meriya Zacharia, Department of Dermatology and Venereology, Government Medical College, Kottayam, Kerala, India. drmeriyazacharia@gmail.com
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Received: ,
Accepted: ,
How to cite this article: Nallattu S, Zacharia M, Ajithkumar K. Knowledge, attitude and self-care practices among pemphigus vulgaris patients – A cross-sectional study. J Skin Sex Transm Dis. doi: 10.25259/JSSTD_179_2025
Abstract
Objectives:
Pemphigus is a life-threatening autoimmune vesiculobullous disease requiring long-term treatment with immunosuppressants. It can cause a negative impact on the quality of life of the patient. Understanding the patient’s perspective of the disease will help the healthcare provider to correct the knowledge, attitude, and self-care practices to improve the patient’s outcome. The present study was aimed at evaluating the knowledge, attitude, and practices (KAPs) of patients with pemphigus vulgaris in a tertiary care center.
Materials and Methods:
A cross-sectional analytical questionnaire-based study was carried out among 42 patients with pemphigus vulgaris attending the Department of Dermatology in a tertiary care center to assess the KAP of patients about their disease. The data were entered and analyzed using the Statistical Package for the Social Sciences version 20.
Results:
Forty-two consecutive patients were included in this study with a mean age of 52 ± 13 years. Male: female ratio was 1:1.7. 40.5% of patients knew that pemphigus was an autoimmune disease. There was a statistically significant association between the knowledge about the cause of the disease and the educational level of the patient, with p = 0.0065. 100% knew that it was non-contagious. 59.5% patients knew the chronic nature of the disease, and 83.3% of patients knew that steroids were a treatment option, and among them, 94.3% were aware of at least one side effect of steroid. 71.4% of patients were aware of the availability of rituximab as an effective treatment option. 31% of the study population felt that their mental health was affected by the disease. 73.8% of the patients were concerned about the side effects of steroid. 95.2% patients on rituximab felt that their outlook on life changed for the better after starting this drug. 83.3% of pemphigus patients came for regular review, 85.7% adhered to their prescribed drugs, and 90.5% of the patients took steps to reduce the side effects of systemic steroids.
Limitations:
Being a single-center study with limited sample size,the findings of the study may not be generalizable.
Conclusion:
The majority of our patients had reasonable knowledge and a fairly good attitude toward the disease and maintained effective self-care practices. However, there is scope for improvement.
Keywords
Attitude
Knowledge
Patient awareness
Pemphigus
Practice
INTRODUCTION
Pemphigus vulgaris is a disease that severely affects the quality of life (QOL) of the patient due to the refractory nature of the illness, frequent relapses, long-term treatment, poor self-image, and associated stigma.[1] Patients who lack adequate knowledge about the disease are often dissatisfied with their care and exhibit low adherence to medical treatments. In a study by Segal et al., strong beliefs in cyclical course and psychological cause of the disease predicted lower QOL.[2] Imparting proper knowledge about the disease, positively influencing the attitude and disease-related self-care practices as part of treatment, will improve the treatment outcomes.[3] Evaluating the knowledge, attitude, and practice of pemphigus vulgaris patients will help the health care providers to identify the knowledge gaps and accordingly modify their counselling and support strategies for the benefit of the patients.
As far as we know, there are only very few studies about the knowledge, attitude, and practices among pemphigus vulgaris patients in the Asian population. Hence, we decided to undertake this study to assess the knowledge, attitude, and practices in patients with pemphigus vulgaris attending the dermatology outpatient department (OPD) in our tertiary care center.
MATERIALS AND METHODS
We did a single-center hospital-based cross-sectional study among the patients receiving treatment for pemphigus vulgaris at the Department of Dermatology, Venereology, and Leprosy, in a tertiary care center. The study was approved by the Institutional Ethics committee, and the study was done during a period of 6 months from February 2024 to July 2024. A questionnaire was designed and validated for face validity and contact validity among the experts and patients in our hospital. 42 consecutive patients with biopsy-proven pemphigus vulgaris were included in the study. Those who were not willing to participate and those who could not understand Malayalam or English were excluded from the study. All the study participants answered the self-administered pre-set validated questionnaire.
Demographic variables, including age, sex, occupation, and educational qualification, were noted. Duration, number of exacerbations, medications taken, and side effects of the drugs were recorded. Patients were assessed for their knowledge about the disease, the available treatment options, attitude toward the disease, and the self-care practices they followed. Data were entered and analyzed using the Statistical Package for the Social Sciences software version 20. Qualitative variables were expressed as percentages and quantitative variables as mean and standard deviation. The association between variables was assessed using the chi-square test. The level of significance was fixed at 0.05.
Sample size
The sample required for this study was calculated using the formula n = 4 standard deviation (SD)2/d2
Where SD is the standard deviation of the knowledge domain in the previous study by Sadeghi et al. = 2.9[3]
d = precision = 0.9
Sample size = 4 × 2.9 × 2.9/0.9 × 0.9 = 42.
RESULTS
Baseline parameters of the study participants are shown in Table 1. Among the 42 patients included in this study, 15 (35.7%) were males, and 27 (64.3%) were females with a M:F ratio of 1:1.7. The mean age of the participants was 52 ± 13 (range was 20–79).
| Variable | Number of patients (in percentage) |
|---|---|
| Age | |
| 10–20 | 0 |
| 21–30 | 2 (4.7) |
| 31–40 | 4 (9.5) |
| 41–50 | 13 (31) |
| 51–60 | 12 (28.6) |
| 61–70 | 7 (16.7) |
| 71–80 | 4 (9.5) |
| Duration of disease | |
| ≤5 years | 35 (83.3) |
| >5 years | 7 (16.7) |
| Education level | |
| Up to 10thgrade | 23 (54.8) |
| Pre degree | 11 (26.2) |
| Degree | 8 (19) |
| Number of relapses | |
| ≤2 | 10 (23.81) |
| >2 | 26 (61.90) |
The duration of the illness varied widely (2 months–10 years); among them, there were three treatment naïve patients. The education levels of the patients ranged from primary schooling to a degree. Most patients (61.9%) had experienced two or more relapses during the course of the disease. Six patients (14.29%) included in the study did not have a relapse.
Knowledge
The details of knowledge domain among study participants are shown in Table 2. Among the 42 patients in our study, 17 patients (40.5%) knew that pemphigus was due to the production of substances within their body acting against the skin, and among these patients, 70.6% (n = 12) had an educational level of 12th standard or above. There was a statistically significant association between the correct knowledge about the disease and the educational level of the patient (p = 0.0065). 76% of the patients who were aware of the cause of the disease had a disease duration of <5 years.
| Knowledge variables | Number of patients (percentage) (n = 42) |
|---|---|
| Perception about the cause of pemphigus | |
| Due to the production of things in the body against the skin | 17 (40.5) |
| Bacteria | 7 (16.7) |
| Allergy | 8 (19) |
| Snake venom | 0 |
| Food/drugs | 4 (9.5) |
| Curse | 0 |
| Cancer | 0 |
| Evil eye | 0 |
| Unsure | 6 (14.2) |
| Awareness about the non-contagious nature of the disease | 42 (100) |
| Awareness about the chronicity of the disease | 25 (59.5) |
| Awareness about steroids as a treatment option | 35 (83.3) |
| Awareness of at least one steroid side effect among patients who knew they were taking steroids | 33 (94.3) |
| Knowledge about the side effects of steroids (n= 33) | |
| Lowering immunity | 17 (51.5) |
| Risk of diabetes | 21 (63.6) |
| Bone thinning | 21 (63.6) |
| Edema of the hands and feet | 11 (33.3) |
| Stomach ulcers | 2 (6.1) |
| Awareness about the availability of rituximab | 30 (71.4) |
| Awareness about the need for regular follow-up and treatment compliance | 41 (97.6) |
Out of 42 patients, 50% (21 patients) had taken rituximab, and all of them had completed 2 doses. Of the patients who received rituximab, 42.9% (n = 9) were in the 51–60 age group. Among these patients who were aware of the side effects of rituximab, 15 patients (78.9%) had an educational qualification above 10th standard. Two patients (9.5%) who got rituximab, however, were not aware of any side effects of it, and both of them had an educational qualification below the 10th standard. The awareness that rituximab could cause side effec ts was lower in patients with educational qualifications up to the 10th standard, and this difference was statistically significant (p = 0.026). No association was found between educational level and knowledge of the correct rituximab protocol [Table 3].
| Knowledge variables of rituximab | Number of patients (percentage) (n = 21) |
|---|---|
| Side effects of rituximab | |
| Heart-related problems | 5 (24) |
| Decrease in blood cells | 1 (5) |
| Decrease in immunity | 10 (47) |
| Damage to the kidney | 1 (5) |
| Knowledge of the correct rituximab protocol | 8 (38.1) |
| Awareness of rituximab’s role in reducing steroid side effects | 14 (66.6) |
| Awareness of rituximab-related side effects | 19 (90.5) |
Attitude
The details of attitude domain among study participants are shown in Table 4. Among the 42 patients included in the study, 13 patients (31%) believed that their mental health was affected by the disease due to reasons like fear of judgment, loss of interest in social gatherings, and belief that others kept a distance from them, and 6 patients among them (46.2%) were in the age group of 41–50 years. All of them had a disease duration of ≤5 years. However, none of them progressed to any overt psychiatric illness.
| Variables related to the attitude domain | Number of patients (percentage) (n = 42) |
|---|---|
| Mental health affected | 13 (31) |
| Concerned about the potential side effects of steroids | 31 (73.8) |
| Attitude toward treatment | |
| Believed they would benefit from modern medicine | 28 (66.7) |
| Believed alternative medicine was also needed | 3 (7.1) |
| Believed no treatment could cure pemphigus | 11 (26.2) |
| Career affected | 16 (38.1) |
| Perceived reasons for affecting the career (n=16) | |
| Disease exacerbation | 8 (50) |
| Hospital admission | 5 (31) |
| Treatment side effects | 1 (6.25) |
| Nonspecific factors | 2 (12.5) |
| Better outlook on life after rituximab injection | 20 (95.2) (n = 21) |
Practice
The results related to practice among the study participants are summarized in Table 5. It shows majority of the study participants were adherent to the treatment.
| Practice variables | Number of patients (percentage) (n = 42) |
|---|---|
| Kept regular doctor appointments | 35 (83.3) |
| Adhered to prescribed medications | 36 (85.7) |
| Adjusted medication on their own | 2 (4.8) |
| Purchased medication without a prescription | 4 (9.5) |
| Took precautions to minimize steroid side effects | 38 (90.5) |
| Precautions to minimize steroid side effects (n = 38) | |
| Regular monitoring of blood sugar | 35 (92) |
| Regular monitoring of blood pressure | 32 (85) |
| Intake of calcium tablets | 30 (80) |
DISCUSSION
Forty-two patients with pemphigus vulgaris who attended the dermatology OPD were included in this study. In our study, the maximum number of patients were in the 5th decade of life, and the male to female ratio was 1:1.7. The duration of the disease was ≤5 years in 83.3% patients. In 54.8% of the patients, the education level was below 10th grade. In our study, 50% of the patients had received rituximab.
Knowledge
In our study, 40.5% of patients knew that pemphigus was an autoimmune disease, while the rest of them held other beliefs that pemphigus could be due to bacterial infection, allergy, or some food intake, while 14.2% of our patients were unsure of the cause. In the study by Nasimi et al., 64% patients believed that altered immunity plays a role in the disease process, and 17% of their patients believed in a germ etiology of the disease.[4] This shows that there is a knowledge gap regarding the cause of the disease in our patients. Among the patients who recognized pemphigus as an autoimmune disease, 70.6% had an educational level of 12th standard and above, and there was a statistically significant association between the educational level and the knowledge about the probable cause of the disease. Nasimi et al. in their study also found that patients with higher education levels were more likely to attribute their illness to altered immunity than those with lower education levels.[4] This highlights the need to explain the cause of the disease to patients with a lower educational status in a more understandable way, as it will help in better treatment adherence. In our study, 76.5% of patients who correctly identified the etiology of the disease had a disease duration of <5 years, which could probably be due to better access to health-related information, including internet resources. Every patient in our study knew about the non-contagious nature of the disease. Only 59.5% of study participants were aware of the chronic nature of pemphigus, which was consistent with findings in the study by Nasimi et al.[4] This points to a knowledge gap and emphasizes the need to repeatedly and more effectively explain the course of the disease to the patient. 83.3% of patients in our study knew that steroids were the treatment, and among them, 94.3% of the patients were aware of at least one side effect of steroids, irrespective of their educational status, and duration of the disease, which is almost in alignment with the study done by Qutob et al.[5] In our study, 71.4% of patients knew about the availability of rituximab as an effective treatment modality.
Among the patients who received rituximab, 66.6% knew that it helps reduce the side effects of systemic steroids, and 90.5% was well aware that rituximab itself had side effects, which was almost comparable to the study by Liu et al.[6] In our study, this level of awareness was found to be significantly higher in patients with an educational qualification of more than 10th standard. This reiterates the need to impart health education and counselling in a more tailored manner to suit patients with a lower educational status to reduce the knowledge gap in this aspect.
Attitude
In our study, 66.6% of patients in our study had a positive attitude that they would benefit from the system of modern medicine that they were receiving. However, 26% patients were apprehensive that their disease would not be controlled by any treatment. This highlights a gap and the need for well-balanced counseling to facilitate long-term adherence to the treatment without losing confidence in the system. The psychological impact that pemphigus had on our patients was significant. In our study, 31% patients believed that the disease affected their mental health. However, none of them progressed to develop any overt psychiatric illness during the study period. Kumar et al. in their study reported psychiatric morbidity in 40% of the pemphigus patients.[7] Our study did not employ mental health tools to detect the exact mental health issues, as this was not one of our study objectives. This also points to a gap that exists in assessing and addressing the mental health effects of chronic disease like pemphigus. In our study, 38.1% acknowledged that the disease adversely affected their career. This is similar to the observation by Tian et al. on psoriasis, yet another chronic dermatologic condition where 32% of patients were affected.[8] 73.8% of our participants were anxious about the potential side effects of long-term steroids. This again highlights a gap in addressing the psychosocial aspects of pemphigus patients, which will help them to adjust better to their disease and be compliant with the treatment. 95.2% of patients who took rituximab reported that their attitude to life changed for the better, and 38.1% felt that after rituximab, their daily expenses for treating pemphigus decreased, and this had a positive impact on life. The emotional well-being of the patient often goes a long way in the final improvement of the disease.
Practice
In our study, 83.3% participants attended their medical appointments regularly, and 85.7% adhered to their prescribed medications. This is in alignment with the findings by James et al., where a majority (82%) of patients with autoimmune bullous disorders, such as pemphigus and bullous pemphigoid, demonstrated high treatment adherence.[9] None of the patients obtained their medication without a prescription, and only a minority (4.8%) reported that they adjusted their medicines by themselves. 90.5% of the patients followed very proactive self-care practices to reduce the side effects of long-term steroids, such as regular monitoring of blood sugar, blood pressure, supplementing diet with calcium and bisphosphonates. This reflects only a minor gap in this aspect of patient education but reaffirms the need for effective and continuous patient education initiatives for proper disease control.
LIMITATIONS
Being a single-center study, the findings of this study may not be generalizable.
CONCLUSION
This study on patients with pemphigus vulgaris revealed that most participants had good knowledge about the chronic, non-infectious nature of the disease, its long-term management, and newer therapies like rituximab. However, gaps remained regarding understanding of the disease’s etiology. Higher educational status was associated with better awareness, indicating the need for education strategies tailored to patients’ literacy levels. Regular assessment of knowledge, attitude, and practice, along with multicentric studies, can guide more effective counseling and holistic patient education for improved outcomes.
Ethical approval:
The study was approved by the Institutional Review Board at Government Medical College, Kozhikode, number 09/2024, dated 20th February 2024.
Declaration of patient consent:
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient has given consent for clinical information to be reported in the journal. The patient understands that the patient’s names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Conflicts of interest:
Dr. Kidagazhiathmana Ajithkumar is on the Editorial Board of the Journal.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation:
The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.
Financial support and sponsorship: Nil.
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