INTRODUCTION

Autoimmune diseases are characterized by a dysregulated immune system, along with the production of antibodies against body tissues.1 The majority of patients with autoimmune diseases are treated with immunosuppressive medications. However, the increased risk of infection is a significant adverse effect of these medications and a major concern during the COVID-19 pandemic. The presence of risk factors, including autoimmune diseases, can predispose individuals to COVID-19.2 Thus, these patients faced the dilemma of whether to continue the use of immunosuppressive medications to control their disease or cease medication to help prevent COVID-19 infection.3

To date, more than 80 types of autoimmune diseases have been identified, 12 of which have skin manifestations.4 Most autoimmune diseases are severe and chronic in nature and adversely affect patients’ quality of life (QoL).5 Pemphigus vulgaris is one of the most serious and dangerous of these diseases and usually leads to hospitalization.6,7 In addition to increased risk from the use of immunosuppressive medications, patients with autoimmune skin diseases are at a higher risk of infection than the general population because of their compromised skin integrity (eg, blisters, scratching). This increased risk led to concerns during the COVID-19 pandemic, especially when other predisposing factors were present.8 Patients may feel frustrated or confused trying to balance the management of their autoimmune disease with reducing the risk of COVID-19 infection.9

In the present study, the authors aimed to qualitatively explore the experiences of patients with an autoimmune disease to understand their concerns, challenges, and problems during the COVID-19 pandemic. Investigating these experiences can lead to improvements in healthcare and disease management.10 Because COVID-19 is a new phenomenon, its impact on people, especially patients with autoimmune skin diseases, is not well established.

METHODS

This qualitative study was conducted using the conventional content analysis method to provide new knowledge and develop practical guidelines. It is also an appropriate approach to reach a deep understanding of people’s experiences of a phenomenon under certain circumstances.11

Study Sample

Researchers recruited participants by purposeful sampling among patients with autoimmune skin diseases who were hospitalized in dermatology wards. The inclusion criteria were as follows: older than 18 years, ability to speak Persian, lack of psychological problems, and willingness to participate in the study. Sample recruitment continued until data saturation was reached (ie, when themes and subthemes were complete, and no new data were added).

A total of 12 patients were interviewed to achieve data saturation; the data were collected and analyzed over a six-month period.

Data Collection Methods

One researcher conducted all participant interviews. These in-depth, semi-structured, face-to-face interviews were in full compliance with the health protocols and took place in a room located in the dermatology ward of Razi Hospital. All interviews were audio-recorded with the permission of the participants. The interview began with demographic questions and then continued with open questions related to the study objectives based on an interview guide. The interview guide questions were as follows: “What were your experiences during the COVID-19 pandemic concerning your skin disease?”, “What were your challenges during the COVID-19 pandemic?”, and “How do you describe your changes since the start of the COVID-19 pandemic?” The researcher also followed up with probing questions such as, “Can you explain more?”

Ethical Considerations

The researchers explained the study objectives to all prospective participants and obtained written informed consent for participation and to record the interview. The researchers assured participants of the confidentiality of their information, anonymous use of the interview transcripts, voluntary participation in the study, right to withdraw from the study at any time, and deletion of their recorded voice at the end of the study. The time and place of the interview were determined in coordination with the participants.

Data Analysis

Data were analyzed using the conventional content analysis method, based on the five steps described by Graneheim and Lundman.12 As soon as possible after an interview was completed, the researcher who conducted the interviews listened to the audio recording repeatedly and transcribed the interview verbatim. Each transcribed interview was reviewed several times and meaning units were determined and coded. A meaning unit is the smallest unit that expresses a concept or insight related to the research question. Based on the coding and analysis, the researchers determined when data saturation was reached. The codes were categorized after comparisons to extract categories and themes.

Rigor/Trustworthiness

To validate the findings, the authors used Lincoln and Guba’s13 criteria of credibility (confidence in the ‘truth’ of the findings), transferability (applicability in other contexts), dependability (findings are consistent and repeatable) and confirmability (findings are shaped by the respondents and not researcher bias). Regarding credibility, the authors considered proper interactions with the participants; review of data by the participants and recruitment of participants with maximum diversity also improved transferability. To increase dependability, the authors transcribed the collected data as soon as possible, carried out re-evaluation, and performed a constant comparative analysis. To increase the confirmability of the data, the second researcher reviewed and approved the transcribed interviews and extracted codes. The authors also shared two transcribed interviews and extracted codes with an expert colleague for confirmation.

RESULTS

The demographic characteristics of the 12 participants (9 men, 3 women) are summarized in Table 1. Participant interviews ranged from 35 to 45 minutes in length. Data analysis led to the extraction of 442 primary codes. Continuous data analysis revealed the following main themes, categories, and subcategories (Table 2).*

Table 1. - PARTICIPANT CHARACTERISTICS Participant No. Sex Age, y Marital Status Education Level Type of Disease 1 Male 37 Married Bachelors Pemphigus vulgaris 2 Male 44 Divorced Masters Psoriasis 3 Male 37 Single Middle school Pemphigus vulgaris 4 Female 68 Married High school Pemphigus vulgaris 5 Male 71 Widower Middle school Pemphigus vulgaris 6 Male 27 Single Masters Pemphigus vulgaris 7 Male 62 Married High school Pemphigus vulgaris 8 Female 28 Married Bachelors Pemphigus vulgaris 9 Male 56 Married High school Psoriasis 10 Male 47 Divorced Bachelors Pemphigus vulgaris 11 Female 39 Divorced Bachelors Hypersensitivity to gel injection 12 Male 55 Married High school Psoriasis
Table 2. - MAIN THEMES, CATEGORIES, AND SUBCATEGORIES Main Themes Categories Subcategories Changes in mental/psychological status Adverse mental/psychological effects and reduced quality of life - Feelings of depression and unhappiness
- Dissatisfaction with life
- Demotivation Fear and anxiety of COVID-19 risk - Fear of death
- Anxiety over transmitting COVID-19 to family members
- Anxiety over COVID-19 transmission through skin lesions Physical consequences Exacerbation of skin disease - Increased incidence of skin lesions
- Repeated hospitalizations Feelings of vulnerability to COVID-19 - Weakness caused by the skin disease
- Increased susceptibility because of immunosuppressive medication use Social impacts and financial problems Reduced social interactions and isolation - Feelings of rejection by relatives from fear and negative attitudes
- Assumption of the contagious nature of skin lesions and their attribution to COVID-19 Decline in financial status and livelihood - Decreased income
- Job loss and unemployment
Theme 1: Changes in Mental/Psychological Status Adverse mental/psychological effects and reduced QoL

Adverse mental and psychological effects, besides reduced QoL, were an experience emphasized by most of the participants. These experiences fell into the subcategories of feelings of depression and unhappiness, dissatisfaction with life, and demotivation.

Feelings of depression and unhappiness

Some participants discussed their constant negative feelings related to factors such as hearing about the deaths of individuals with COVID-19, social restrictions, exposure to COVID-19 and risk of transmission to others, and others’ different attitudes toward them.

“I had a terrible time during the COVID-19 outbreak. I was really afraid; I turned on the TV, and there was only bad news; it made me feel sick and scared. Almost 700 or 800 people died every day.” (Participant [P] 4)

Although many of the patients were predisposed to depression due to their skin disease and its complications, the COVID-19 pandemic exacerbated their condition.

Dissatisfaction with life

The patients expressed their dissatisfaction with life in phrases such as “growing tired of living” and “having a difficult life.”

“Life is no longer enjoyable to me. Nothing is the same as before; I feel that I am forced to continue living; I have to fight to stay alive.” (P 2)

Various factors, such as financial problems, isolation, major anxiety, and long duration of the pandemic, along with the skin disease and its exacerbation, might have contributed to life dissatisfaction in the patients.

Demotivation

Although the patients had previously adapted to the problems associated with their skin disease, the COVID-19 pandemic demotivated them.

"I had accepted that my disease was part of my life and that I should have a positive attitude toward it, but now things have changed again. The loss of communication has been difficult for someone like me with many social interactions. My job somewhat demanded me to engage with other people, but now I am more isolated; these changes have made me depressed.” (P 1)

The patients’ demotivation could be related to factors such as obligation to adhere to strict restrictions, disrupted social interactions, and feelings of exhaustion caused by the skin disease.

Fear and anxiety of COVID-19 risk

Almost all participants described feelings of fear, anxiety, and risk.

Fear of death.

Many patients considered themselves to be highly vulnerable to COVID-19 and believed that their death was inevitable if they contracted the infection. Hospitalization because of skin lesion recurrence exacerbated their fear and anxiety, as they assumed that the hospital environment was contaminated.

“Young people and people without any problems become infected and die. So, what will happen to me with all the health problems I already have? Do you really think I’ll survive if I become infected?” (P 9)

Fear of death was one of the most important psychological experiences of these patients, reported by the majority of participants (n = 8/12).

Anxiety over transmitting COVID-19 to family members

Many participants were anxious about being a carrier and transmitting the virus to their family members.

“I wore a face mask to cover my face so that other people would not see me or become infected. I was worried that if I became infected, it would predispose my child to the virus.” (P 11)

In some cases, anxiety over infection with COVID-19 was patients' main concern. Two of the participants reported that the main reason for their adherence to health protocols was to prevent virus transmission to their family members.

Anxiety over COVID-19 transmission through skin lesions

Some participants believed that COVID-19 could be transmitted through skin lesions. These patients thought that the hospital equipment was infected with the coronavirus and said they would bring any required items, such as sheets, to the hospital.

“Every time I was admitted to the hospital, I was anxious about the place being contaminated and becoming infected with the virus due to my scarred body. If you touch a contaminated surface and then touch your mouth or eyes, the virus will be transmitted; it can be transmitted much easier through skin lesions.” (P 8)

Theme 2: Physical Consequences

Physical consequences comprised the second main theme of this study and was divided into two categories: exacerbation of skin disease and feelings of vulnerability to COVID-19.

Exacerbation of skin disease Increased incidence of skin lesions

Some patients addressed the exacerbation of skin disease with the spread of lesions by both location and dimensions. From the patients’ perspective, there were multiple contributing factors, including demotivation, anxiety, depression, and financial problems.

“Recently, the recurrence of my symptoms has increased in both number and extent.” (P 6)

Repeated hospitalizations

Some patients believed that the increased recurrence of skin lesions and hospitalization contributed to the exacerbation of their skin disease.

“Since the beginning of the coronavirus outbreak, I have been hospitalized three times due to the recurrence of my disease.” (P 8)

Feelings of vulnerability to COVID-19 Weakness caused by the skin disease

Some patients believed that immune changes would predispose them to COVID-19.

“We should observe everything more carefully. After all, those who have an underlying disease, especially my disease, may have a more severe infection.” (P 9)

Increased susceptibility because of immunosuppressive medication use

Some patients believed that the use of immunosuppressive drugs was the reason for their vulnerability to COVID-19.

“When everyone was talking about strengthening their immune system, I had to take medications that would debilitate my immune system.” (P 6)

Theme 3: Social Impacts and Financial Problems

This was the third main theme extracted in this study with the following two categories: reduced social interactions and isolation and decline in financial status and livelihood.

Reduced social interactions and isolation

The main reasons for the reduced social interactions and isolation were mandated restrictions, presumptions about their vulnerability to COVID-19, assumption of a relationship between skin lesions and COVID-19 and its symptoms, and other people’s fear of these patients.

Feeling of rejection by relatives from fear and negative attitudes

According to the participants, they were viewed as a source of virus spread, limiting friends’ and relatives’ communication with them. Some patients even lost their job due to their colleagues’ assumption that they were virus carriers.

“If I happen to sneeze or cough, everyone starts running away, assuming that I have COVID-19. It is as if before COVID-19, no one coughed or sneezed, especially relatives and friends who know that I have a skin disease! They think that I will be definitely infected with the virus and die!” (P 6)

Assumption of the contagious nature of skin lesions and their attribution to COVID-19

One of the challenges of the patients was that people around them would attribute their skin lesions to COVID-19. They believed that these lesions were caused by COVID-19 and were its symptoms. In this regard, one of the patients, who was a taxi driver, stated:

“When a passenger gets in the car, they think that I might have the coronavirus disease. People’s attitude toward me has become much worse. They used to think that the lesions were because of the spillage of boiling water or an abscess, but now they think that I have COVID-19.” (P 2)

Overall, people’s misconceptions caused many problems for the patients. One of the patients stated that many barbers refused to cut his hair despite his explanations. Autoimmune skin diseases scared others even before the COVID-19 pandemic because of fears the disease may be contagious, which is erroneous.

Decline in financial status and livelihood

Some patients experienced major financial problems during the COVID-19 pandemic, including decreased income or job loss.

Decreased income

Some patients experienced major financial difficulties and could not meet basic needs.

“I spent nights without even having bread to eat. I had a very hard time in this period, a very difficult time. Some immoral people fired me for no reason. I am in so much debt, borrowing 500,000 Rials [1 USD] from one person and 1,000,000 Rials [2 USD] from another person.” (P 10)

The COVID-19 pandemic caused some of the participants to lose their job or business, similar to many other people. However, these patients experienced additional difficulties because of their skin lesions and the negative social attitudes toward them. Some could not afford treatments for their skin diseases, such as medications or new wound dressings.

“As God is my witness, only yesterday, I bought a small wound dressing, which is only enough for two wrappings. It cost 4,000,000 Rials [8 USD], and I have to pay for it again. How should I pay for it? The doctor told me that I should buy two types of dressings, but I could only pay for one type.” (P 11)

The inability to afford treatments contributed to the recurrence and progression of lesions, leading to the hospitalization of patients.

Job loss and unemployment

Owing to people’s increased sensitivity to COVID-19, some participants lost their job because colleagues or managers feared they may be a source of infection and assumed their skin lesions were contagious.

“It was early during the pandemic that my skin lesions started to become worse, and other workers started snitching on me, telling everyone that I was sick and that I would make all of them sick as well, so my employer fired me.” (P 10)

Overall, job loss and deterioration of financial status were new sources of stress for the participants and their efforts to find a new job were often fruitless.

DISCUSSION

Patients with autoimmune skin diseases experienced changes in their mental/psychological status, physical consequences, social impacts, and financial problems during the COVID-19 pandemic. Changes in the mental and psychological status of the patients were the most significant experiences observed. Specifically, participants frequently mentioned anxiety related to contracting and spreading COVID-19, as well as a fear of death. Participants worried that the virus would enter their body through skin lesions, in addition to the common routes of transmission. Fear and anxiety were the primary reasons why these patients chose not to visit a dermatologist or undergo periodic tests, which led to disease progression and recurrence of complications.

In a study by Sloan et al14 in the United Kingdom, the fear and anxiety experienced by patients with systemic autoimmune diseases prevented them from visiting specialists and undergoing tests. Whereas that study only addressed the healthcare behaviors of patients with autoimmune diseases, the present research explored the experiences of patients with autoimmune skin diseases regarding different aspects of life. These patients’ fear and anxiety were attributed to their perceived vulnerability to COVID-19.

George et al15 reported on the mental and psychological effects of COVID-19 on US patients with chronic autoimmune diseases, including cutaneous diseases. They noted that severe anxiety in these patients made them feel more vulnerable to COVID-19 and resulted in their avoidance of periodic physician visits, paraclinical tests, and use of immunosuppressive drugs. In addition to changes in patients’ mental/psychological status, the present study revealed that patients with autoimmune diseases also experienced negative physical consequences, social changes, and financial difficulties.

Al-Rahimi et al,16 in a study in Saudi Arabia, also reported that the COVID-19 pandemic negatively affected the mental/psychological well-being of patients with autoimmune disorders, causing them to experience major anxiety and fear. Based on the current findings, in addition to the perceived potential risk of infection, these patients also worried about the risk of virus transmission to their family members, another source of anxiety.

In addition, a study by Wańkowicz et al17 revealed increases in anxiety, depression, and insomnia in patients with chronic diseases during the COVID-19 pandemic. Mask wearing deprived them of fresh air in the work environment and caused shortness of breath, sweating, and itching. Nishi et al18 reported the negative physical and psychological consequences of the prolonged use of face masks during the COVID-19 pandemic. Scheid et al19 also highlighted the adverse physical and psychological consequences of wearing a face mask during the COVID-19 pandemic.

During the COVID-19 pandemic, negative social impacts and financial problems were of secondary priority to patients with autoimmune skin diseases, who experienced declines in financial status because of factors such as business stagnation, reduced monthly income, and job loss. Some patients endured major financial difficulties and could not meet basic needs or purchase medications for their skin disease, forcing them to borrow money from friends. A study by Karpman et al20 also reported prominent effects of the COVID-19 pandemic on the financial status and livelihood of individuals, resulting in unemployment, forced leave, reduced working hours, and reduced income. The COVID-19 pandemic resulted in significant declines in monthly incomes and negative effects on socioeconomic status.21–23

According to the present findings, in addition to common financial problems reported in different populations, patients with autoimmune skin diseases endured additional difficulties due to society’s misconceptions regarding their disease. They felt rejected and socially isolated, which was exacerbated by a noticeable reduction in family interactions and visits.

Patients also reported experiencing significant physical consequences. These patients considered themselves to be extremely vulnerable to the coronavirus because of their skin disease and the use of immunosuppressive drugs, and, as a result, they tried to adhere to the health protocols more strictly. They also believed that their skin disease had gradually aggravated since the onset of the COVID-19 pandemic, as indicated by the increased frequency of recurrences. Similarly, Sloan et al14 reported the exacerbation of autoimmune diseases and emergence of related complications during the COVID-19 pandemic, which was attributed to disrupted physician visits and patients’ nonadherence with treatment.

Dharia et al24 reported increases in the recurrence of severe symptoms of autoimmune diseases and the hospitalization rate of US patients during the COVID-19 pandemic. Further, in a study in Iran, Khabazi et al25 found that worsening symptoms of autoimmune diseases during the COVID-19 pandemic resulted from nonadherence to therapeutic regimens because patients felt vulnerable to COVID-19. Similarly, a study by Almeida et al24 in Brazil reported the deterioration of physical health and the exacerbation of chronic diseases since the onset of the COVID-19 pandemic; these results were consistent with the present findings.

CONCLUSIONS

The COVID-19 pandemic negatively affected different domains of life in patients with autoimmune skin diseases. Patients reported experiencing psychological, social, and financial problems during the pandemic, as well as exacerbated skin disease. This research demonstrates need for emotional and financial support for patients with autoimmune diseases, particularly during periods such as the COVID-19 pandemic when they face additional challenges. It is important to manage the therapeutic course of patients who are at risk of infection, especially patients with autoimmune skin diseases, via appropriate planning. It would also be helpful to establish organizations to provide psychological and socioeconomic support to these patients and other vulnerable groups. These patients may benefit from support groups during these times. Moreover, public education can reduce people’s misconceptions about these patients and improve their acceptance by society.

The results of this research can be used to train nursing students and nurses working in dermatology departments and carry out quantitative research on interventions for these patients.

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