Abstract
This study aims to provide a closer examination of the problems experienced by individuals with pemphigus vulgaris with their eyes and experiences. This is a phenomenological study. The study population was completed with eight people with pemphigus vulgaris who applied to the dermatology clinic of a university hospital in a metropolis between September 2019 and March 2020. The interviews were transcribed and analyzed using phenomenological methods. Three main themes emerged and nine supporting sub-themes were identified. The main themes are (a) the physical problems they are experiencing now, (b) the psychological difficulties they are feeling now, and (c) intense future anxiety about the process and the future. This study will increase the understanding of the lived experiences of pemphigus vulgaris patients, increase the awareness of each nurse about these patients and will be able to provide better quality care to individuals with pemphigus vulgaris.
Keywords
Introduction
Pemphigus is a rare, serious, and potentially fatal disease that has a strong negative impact on both dermatologic and general health (Paradisi et al., 2011). Pemphigus is a group of IgG-mediated autoimmune disease of the squamous epithelium. Acantholysin is characterized by causing blisters and erosions in stratified structures such as the skin and oral mucosa. IgG autoantibodies characteristically develop against desmoglein 1 and desmoglein 3 (Kasperkiewicz et al., 2017). The onset and progression of PV generally depend on the interaction between environmental factors and genetic background (Fedeles et al., 2010).
Previous studies on bullous pemphigoid reported a frequency of 0.2 to 3 cases per 100,000. It has been found that patients are often higher in older ages. Women have a higher risk of developing pemphigus and elderly patients (Hsu et al., 2020; Langan et al., 2008). Camacho-Alonso et al. reported that pemphigus vulgaris affects individuals of both sexes, principally those in the 30 to 60 year age-group (Souza et al., 2011). The annual incidence of Bullous Pemphigoid has been estimated to be two cases per million in Malaysia, six to seven cases per million per year in France and Germany, 7.6 cases per million in Singapore, 10 per million in Italy to as many as 30 per million per year in Switzerland. The cause of this variability is not clear and may be related to the racial predisposition to autoimmune skin disease, the prevalence of predisposing HLA genotypes in the study population, or environmental influence (Gudi et al., 2005). The incidence rate of pemphigus in Central Europe is estimated to be two new patients per 1 million person-years (Hertl et al., 2015; Schmidt et al., 2019).
Various studies have shown that often the management of rare diseases is not optimal. Occasionally, due to lack of appropriate treatment and inability to predict complications, patient quality of life is impaired and restricts the patient (Ghodsi et al., 2012; Piri et al., 2018). Corticosteroids, monoclonal antibodies, immunoglobulins, cyclophosphamide, and methotrexate group drugs are used in the treatment of pemphigus vulgaris (PV) (Hertl et al., 2015). Mortality rates, which were high before the introduction of corticosteroids as treatment, have now fallen below 5% with effective pharmacological treatment (Kasperkiewicz et al., 2017; Tabolli et al., 2008). Systemic glucocorticoids form the basis of pemphigus therapy and given their rapid effects; they are usually administered to provide disease control. However, long-term treatment with corticosteroids and immunosuppressants may lead to adverse drug reactions and even death (Cholera & Chainani-Wu, 2016). The most frequently reported causes of death due to long-term corticosteroid/immunosuppressant use are respiratory infections, septicemia, cardiovascular diseases, and peptic ulcer disease (Cholera & Chainani-Wu, 2016; Kasperkiewicz et al., 2017).
PV usually begins with painful oral mucosal lesions that make it challenging to eat. When skin involvement occurs, vesiculobullous wounds starting from the head and neck and spreading to the trunk are observed. These unpleasant lesions can cause pain, itching, and burning (Czerninski et al., 2014; Da Silva Brandão & dos Santos, 2013; Hertl et al., 2015; Schmidt et al., 2019). In the presence of comorbidities associated with individual differences and side effects of treatment, this effect can be even further exacerbated. Patients diagnosed with PV present with severe nutritional problems, weight loss, deterioration in body integrity, and the inability to maintain daily life activities. Patients may experience deterioration in partner relationships, depression from psychological problems, suicidal tendencies, social isolation, and job loss (Hsu et al., 2020; Layegh et al., 2013). These changes may occur due to reasons such as appearance, treatment processes, and side effects.
PV causes pain caused by extensive lesions, eating disorders, impaired comfort, psychological problems, and social limitations (Czerninski et al., 2014). There is no doubt that nursing care is important for patients with pemphigus vulgaris. It can be concluded that there are few publications and studies on this subject. The predominance of publications with evidence levels of 4 and 5 reveals the absence of actual clinical studies on this subject. More such studies are urgently needed. Because the duration of hospital stays and hospital costs increase due to the pain and deterioration in the quality of life of hospitalized patients with this pathology. Understanding care as a phenomenon resulting from the care process, one can describe it as the development of actions, attitudes, and behaviors to promote, maintain or restore human dignity and completeness. These actions are based on scientific knowledge, experience, intuition, and critical thinking, and are made for, and with, the person who needs care (Da Silva Brandão & dos Santos, 2013).
Qualitative research is a systematic and subjective way to describe experiences in life, while phenomenology is the science of consciousness about the nature of the essence and phenomenon (Creswell, 2013; Piri et al., 2018). Qualitative content analysis is a method frequently used in nursing research. It offers opportunities to analyze the obtained and descriptive content, as well as the hidden and interpretive content, resulting in categories and themes (Graneheim et al., 2017; Graneheim & Lundman, 2004; Lindgren et al., 2020). We have identified the need for better care, education, and support for PV patients in the clinic. As a result of the high number of patients and workload in the clinic, it may not always be possible to allocate time to each patient for long periods. Researching participants in as a qualitative study will provide the opportunity to interview patients in more detail and provide an approach to their problems from the patients’ point of view. The purpose of this study was to examine how the personal experiences of patients monitored after the diagnosis of PV affect their lives.
Methods
Study Design and Setting
The study was performed in the dermatology clinic of a metropolitan university hospital and included patients who were followed up after diagnosis of pemphigus vulgaris. The study was carried out in Turkey, located in a metropolitan university hospital in the city.
Researchers are nurse academicians who are experts in internal medicine nursing. After their clinical nurse experience, they have been working as academic nurses for many years. They are people who have experience caring for these patient groups. Researchers have had the opportunity to work with this patient group in the dermatology clinic with nursing undergraduate students as nurse academicians for many years.
Sample
Inclusion criteria were individuals hospitalized in the dermatology clinic who were diagnosed with PV at least 3 months prior, adults aged 18 and over, ability to establish verbal communication, and willingness to participate in the study. No distinction was made between men and women or age range, as it was attempted to determine the common life experiences of adult participants of all ages, regardless of gender. In phenomenological studies, there is no exact number limit in determining the number of participants to be included in the research. In the framework of the concept put forward by Glaser and Strauss (1967), data collection should be continued until the step (saturation point). The concepts and processes that can answer the research question are repeated. The most common guiding principle for evaluating a purposeful sample’s adequacy is saturation (Hennink et al., 2017; Morse, 2015). The point, often referred to as data saturation or thematic saturation, indicates the point where data begins to repeat, and further data collection becomes unnecessary (Hennink et al., 2017). In similar studies, this number ranges between and 5 and 25 people (Creswell, 2013). In this study, data saturation was completed after eight interviews.
Data Collection
In-depth interviews were conducted between November 2019 and March 2020. The face-to-face interview technique was used to collect data. On the day of the interview, the researcher who assumed the task of collecting data informed the participant about the purpose and duration of the research, how the data were to be collected, and the roles and responsibilities of the participants. After verbal and written consent was obtained from the participants, interviews were conducted. The interviews generally lasted between 10 and 45 minutes, during which conversations were recorded with a voice recorder. The interview was completed in the patient’s room in a quiet environment. In collecting data, the participants were asked socio-demographic questions, and data were received using a semi-structured questionnaire. The semi-structured questions used in the interview provided the participant with more freedom in answers. Initially, the researcher said, “What does it mean to you to have pemphigus vulgaris?” used open questions like. There was no definitive answer to this question; this question made the participant think freely about his answer. Meanwhile, the researcher used note-taking to record observations, interactions, communications, environmental conditions, and non-verbal movements. In the study, the recording and transcription of the data were done by the first researcher. After each interview, the researchers made simultaneous but independent repeated readings of the transcripts of the recordings and the notes held. As the researchers continued to read the records, there was always repetition in the participants’ statements. Researchers have begun to discuss this. After realizing this situation, they decided to hold another patient interview and were convinced that there was no new sharing and stopped collecting data with eight patients. Partly because of the rare cases of PV cases, no pilot study has been conducted. This may be considered within the scope of the limitation of the research.
Questions should be far from directing individuals and guide them in expressing their thoughts and feelings in their way. (O’Brien et al., 2014; Piri et al., 2018). Expert opinion was obtained in the review of the prepared questions and draft evaluation of the themes. Care was taken not to include expressions to guide the patient in the questions. The questions were repeated when the patients had paused during the interview and got away from the topic, and additional questions were asked when necessary.
Semi-structured interview questions were as follows:
“What does it mean to you to have pemphigus vulgaris?”
“How did you organize your life after pemphigus vulgaris treatment started?”
“What are your thoughts on your health in the future?”
Helpful questions:
✓ “What is it like for you to be a PV patient?”
✓ “Has your life changed after being diagnosed with PV? Can you explain a little bit to us?
✓ “How do you evaluate the process ahead?”
Data Analysis
In the analysis of the data, Moustakas (1994) described the method as experimental, without prejudice, or psychological phenomenology (Creswell, 2013, p. 79). Data analysis followed Moustakas’ (1994) psychological phenomenology, which places less emphasis on the researcher’s comments and more on the description of the participants’ experiences. Moustakas focuses on “stripping (or parenting)” from Husserl’s concepts, which argue that researchers should exclude their own experiences from judgment to approach the examined phenomenon from a purified perspective. The steps followed in the data analysis were determination of the phenomenon in the study, adding the expression of “stripping the person (researchers) from prejudices about their own experiences,” and collecting data from individuals with pemphigus. Then, researchers reduced the data they obtained to expressions and quotations and combined them under themes. A structure was created in which the textural description (what the participants experienced) and the structural classification (under what condition and how they were experienced) of the participants’ experiences were combined to form the general essence of the experience.
In this study, the above steps were followed in the data analysis. In the interviews, voice recordings were taken, and their transcription was performed by the researcher. After the researchers completed the data collection, they started working on the texts. While working independently, the researchers took the interview notes into account and started coding by hand. They came together and tried to reach sub-themes and the main themes to which they were linked, through codes they independently determined. In the meantime, they also discussed their judgment statements about the sub-themes they determined and placed these ideas in brackets under the sub-themes. Then, about the draft sub-themes and main themes, they seek the opinion of an experienced expert on this subject. When the researchers reached a consensus on sub-themes and main themes, taking into account the recommendations of the consultant, they decided on the final form of the theme structuring (Table 1). The researchers clarified their prejudices about sub-themes, which are shown in parentheses in the “Researchers’ ideas” sections. For the textural definition, the participants were asked about their individual experiences regarding PV. Experiences included physical and/or psychological diversity. For the structural definition, the participants were asked to express their relationships with certain variables, such as their condition, family structure, and working status. In qualitative research, the use of checklists has become increasingly common in recent years (O’Brien et al., 2014). In this study “Standards for Reporting Qualitative Research” (SRQR) criteria were met (O’Brien et al., 2014).
Conversion Table of Codes to Themes.
In qualitative studies, credibility to ensure internal validity and transferability for external validity should be provided (Başkale, 2016). In our study, one of the steps to ensure internal validity, long-term interaction, and reducing researcher bias (shared in parentheses) were provided. Participant confirmation was made with only five patients, and three patients were partially completed because patients in the pandemic process could not be reached. A detailed description of the inclusion criteria and working environment as external validity steps is provided. Among the reliability steps, literature research, detailed transfer of the research method and processes are the strengths of the study. The limited number of researchers participating in the study did not allow to use of the triangulation method.
Ethical Considerations
Permission was obtained from the Ethics Committee Ege University Medical Faculty Hospital (Decision no: 19-10.1T / 5) and the clinic of the hospital (Number: 69631334-100) where the research is planned to be conducted. Data were collected after the study aims were explained to and verbal and written informed consent was obtained from the participants. It was explained that the patients were free to withdraw from the study at any time, and they were assured that their care would not be compromised because of withdrawal.
Findings
The age range of the participants consists of adults between 18 and 73. Half of the participants are married, the other half are single and half are women. Three of the participants are still working, only two people have a chronic disease (Table 2).
Descriptive Data of Pemphigus Vulgaris Patients.
Note. M = male; F = female; M = the married; S = single.
Themes
PV, which is both chronic and progressive, affects patients in different ways. The problems experienced by PV patients have many common themes, such as their gender, age, marital status, and working status affecting their experiences related to the disease. Patients may experience severe physical problems from the day they are diagnosed. In this context, themes were formed through three common questions that each patient was asked.
The prejudices of the researchers regarding the problems experienced by the patients are given in parentheses in the “Researchers’ ideas” section. Main themes and sub-themes are in an active relational pattern in themselves. This situation is reflected in the Figure 1.
Main themes and sub-themes.
Main theme 1. What am I experiencing today?
Food problems and weight loss
* There were wounds in my throat; I could not even drink water; I felt tears; even when I yawned, I felt torn. (P3)
* When I had mouth sores, I couldn’t eat anything, I lost 25 kg; even talking was painful because of the wounds. (P4)
* I have had esophagitis at times, I lost 25 kg in the last 8 months. (P5)
* My complaints increased significantly, for the first 2 weeks I was fed only liquid formula and serum. (P7)
* I could not eat because of the injuries in my mouth, and I lost 2 kg. (P8)
Loss of functionality
* When my pain in the mouth increased due to my illness, it prevented me from communicating correctly with people because I could not approach people as I felt pain. (P2)
* My life got harder . . . when the lesions appeared in the genital area, I was very hurt during sitting and getting up. (P3)
* Everything has changed in my life; I cannot walk comfortably due to injuries. (P3), (P4)
* My complaints have increased for some time; I now have to use a wheelchair. (P6)
* My balance changed, and suddenly I became a person who depends on one truth of my life: I have to live with cortisone; it forced me to change my life so much. (P7)
Sexual/relationship changes
* We experienced limitations at the beginning of the disease in our relationship. (P2)
* It made me feel a little hesitant around my wife; she did not say anything, but our frequency of sexual intercourse is not what it used to be. (P4)
* I had a girlfriend, but we broke up after learning that I was sick. (P5)
* My wife did not force me when I had injuries in the genital area, but she kept away from me because it hurts. (P7)
Financial/business life changes
* The institution I worked for supported me a lot, but I had to make changes to my working order. (P2)
* I have to receive treatment on certain days of every month. I want to work all day, but this disease is an obstacle to me. (P5)
Main theme 2. What am I feeling today?
Distortion in body image
* I became depressed when my wounds started to grow on my scalp, on my body, on my face. (P2)
* At the beginning of the disease, I had wounds on my face and in my hair and acne appeared on my face; my body image deteriorated due to this. (P5)
* When wounds are inflamed, discharge begins. (P6).
* All over my body; I have wounds on my head and genital area. . . I feel very uncomfortable, my genital area, and the lesions on my legs itch a lot. (P7), (P8)
Internalized stigma
* I could not look at people’s faces. For example, they were walking away from me, and I was worried as if they were always looking at me. (P2)
* Because of the wounds, I think other people are disgusted by me; I prefer to stay away from them because not everyone knows my situation. (P4)
* I feel bad when people look at me. I get bored, but I do not want to see anyone. (P6)
* I am very uncomfortable with the swollen appearance of my face; I do not like myself. (P7)
Social isolation
* I would not go out a lot anyway, but when the disease starts, I rarely go out. (P1)
* When you have sores on your face and body, when you have a rash, you are not comfortable where you go; this situation can make others uneasy as well. (P2)
* My life has changed in every way; at first it changed socially. I cannot eat outside. (P5)
* I think about starting a gluten-free diet, but I think this will further limit my participation in social life. (P5)
* I did not go out because I am sick. (P6)
Role changes
* My children had fears and questions at first. I cannot eat, drink, or cuddle when the wounds come out. I kept away because of worrying about contamination. (P2)
* My wife is very supportive to me and says “don’t worry about everything, do not worry” because the disease is related to stress. (P7)
Coping difficulties
* There was excessive stress on me during the first periods when my illness occurred. (P2)
* I have an obsession. I am in an extreme control effort. I think it was related to stress when I was preparing for university. (P5)
* I think, “God, where did I find this disease?” (P6)
* You look healthy, but you are a half-person, an unhealthy person. Now I have learned to live with my illness, I have accepted it now, it will always exist with me. (P7)
* I started the diction course last month; it motivates me. (P8)
Main theme 3. What will my future be like?
Anxiety for the future
* This disease is now preventing everything I used to think I wanted for my life; it prevents me from planning my life. (P5)
* We had many troubles; I started to think about what will happen to me very often. I feel bored. (P6)
* I do not know what will happen to me. I am so scared when I think about it; I do not think I will get better. (P7)
* I have delusions; now I can do my work, but I am getting old. (P8)
Discussion
This study aimed to examine the life experiences of individuals with pemphigus vulgaris. Determinations were made based on the experiences of individuals with PV. Pemphigus vulgaris which has a permanent and progressive feature affects patients in different ways; however, the problems experienced by patients have many things in common. Some variables that determine the patient quality of life include the duration of the disease and severity of the problems experienced, as well as the age, gender, marital status, and working status of the individual. Common points of patient statements were shaped based on their answers to three questions. As patients struggle with the challenges they face today, they accumulate fear for the future. Depending on the physical problems experienced by the patients, they experience eating and drinking problems, weakness, pain, and movement limitations. Lesions threatening the integrity of the body can be at a level that will prevent the patient from communicating and socializing.
In 50% to 80% of individuals with PV, mouth lesions are the first sign, and oral lesions take longer to recover than extra oral wounds (Chi et al., 2010). Lesions can be seen in the buccal mucosa, palate, tongue, and inside the lips and gums (Schmidt et al., 2019). Because of this, individuals have serious eating difficulties, pain, and discomfort, which may prevent patients from maintaining an adequate and balanced diet, and thereby decreasing general health and quality of life (Czerninski et al., 2014). It has been suggested that dietary factors are involved in the induction of pemphigus and clinical evidence shows that dietary factors play a role in PV exacerbation. Dietary factors suspected to be pemphigus inducers include foods containing thiols (garlic, leek), phenols (black pepper, paprika), and tannins (mango, guarana, avocado, red wine, etc.) (Fedeles et al., 2010). Consuming hard foods and the use of extracted prostheses may lead to new lesions in unaffected areas of PV patients and increased eating problems (Czerninski et al., 2014; Piri et al., 2018).
In this study, patients with extensive mucocutaneous lesions outside the mouth experienced severe physical movement limitations. A study by Tabolli et al. (2008) found the SF-36 health survey values of PV patients with mucocutaneous lesions in areas outside the mouth to below. Patients were also found to have low role-physical, bodily pain, general health, vitality, social functioning, and role-emotional scores (Tabolli et al., 2008). Another sub-dimension in this study is sexual/relationship changes. This sub-dimension is closely related to the patient’s age and marital status. Female patients with genital lesions stated that they had difficulty choosing clothes, sitting, walking, and maintaining sexual activity. Particularly at the beginning of the disease, married patients stated that they experienced a decrease in frequency and avoidance of sexual intercourse due to pain. In a study by Piri et al. (2018), it was shown that PV patients face family difficulties, marital life problems, and problems with children. One patient stated that they had a fear of infecting their spouse and avoided having intercourse. The reason for the termination of sexual activity between male PV patients and their spouses ended their marriage. A single individual stated that they lost their chance to marry (Piri et al., 2018). Healthy skin is also an important aspect of sexual attraction and self-confidence. A study by Pouran et al. (2013) showed that a high percentage of patients had poor quality of life compared to healthy individuals.
In this study, we determined that patients had to change their working conditions or change their jobs because of their disease. The patients also experienced deterioration in body image and internalized stigma due to physical problems caused by disease symptoms and treatment side effects in the first months following diagnosis. Frequent treatment-resistant lesions also contribute to the deterioration in body image. Physical problems with visible lesions can negatively affect the psychological state of patients and significantly impair patient quality of life. Together, these factors led to a prolonged coping process. A previous study found a strong relationship between the low quality of life of individuals with PV and psychiatric morbidity (Paradisi et al., 2012). An individual’s perception of the disease may affect their psychosocial responses and compliance with PV treatment (Nasimi et al., 2019).
Self-esteem can be significantly affected due to the social isolation associated with the burden of PV symptoms, side effects of treatment, and the visibility of the lesions (Jain & Murrell, 2018). t has also been shown that patients with higher education levels exhibit more effective control over their diseases. A study by Nasimi et al. (2019) determined that female patients were more emotionally affected than male patients. The patients stated that they held these causes responsible for the diseases; stress (89%), family problems (72%), altered immunity (64%), emotional condition (56%), personal behavior (54%), mental attitude (50%), environmental pollution (47%), dietary habits (40%), overwork (39%), personality (34%), history of poor medical care (26%), and smoking (12%) (Nasimi et al., 2019). Men were more likely to experience stress and to smoke than women. Female patients perceive their diseases more often due to visible lesions, difficulties caused by symptoms, and long-term immunosuppressive therapy (Sajedianfard et al., 2019).
The results of this study found that individuals had difficulty adapting to role changes and experienced problems in their relationships. Relatives of individuals with PV are at risk for emotional strain and depression, and their quality of life is also under threat (Ghodsi et al., 2012; Sajedianfard et al., 2019). It has been shown that patients’ discomfort due to their appearance restricts them in communicating and socializing (Piri et al., 2018), which may harm the private lives of both patients and their partners.
In our study, as the prevalence of the existing lesions increased, the patients mentioned the daily work of the pain, nutrition, dressing, and physical limitations in their private lives. This situation is perceived as serious problem for them. Tabolli et al. (2008) investigated the general health status of individuals with PV disease using the (SF-36) scale and found a relationship between the illness duration and psychosocial problems of the patients. In this study, physical function, pain, general health, fitness, social gathering, emotional role, and mental health scores of women were found to be lower than men. The scores of the patients who were recently diagnosed (0–2 years) were lower than those who were diagnosed remotely (3–4 years). Higher problems with a new treatment regimen and increased control of symptoms over time may have affected these results (Tabolli et al., 2008). Previous studies have shown an increased rate of depression in PV patients.
Depression can threaten the quality of life and sometimes turn into a serious illness (Hsu et al., 2020). Pemphigus is a chronic, bullous disease that weakens patients due to the type, severity, extent, and location of the lesions. As a result of disease-related disorders, side effects of treatment, and taking immunosuppressive drugs (high doses of corticosteroids), patients have great psychological effects (Layegh et al., 2013). In a study by Ghodsi et al. (2012) patient quality of life was found to be significantly lower at the onset of disease. There are two reasons for this: long-term intense immunosuppressive therapy caused by comorbidity, and adverse effects of psychological problems caused by PV. The study found that, while individuals tried to adapt to the disease and what it may bring, they also experienced severe anxiety, which manifested itself in different ways in all patients. Younger patients were anxious about the inability to organize their work and private lives and to plan their future, while older patients feared being dependent on others (Ghodsi et al., 2012).
Some limitations such as the relatively low incidence of PV and the fact that these patients are not served in every hospital make it possible for some of our nurse colleagues to provide care for these patients. The symptoms of pemphigus vulgaris, which are versatile and distorting the body image, necessitate the patients’ need for multi-directional care. Problems arising from the diversity of working conditions of nurses may cause limitations in allocating the necessary time to these patients at all times. The importance of this study is that it will contribute to our colleagues in the field of nursing who cannot find this opportunity.
Limitations
This study has some limitations. The study was conducted in a single center, and therefore the results may be affected by participant and hospital characteristics. The results should be supported by other studies.
Implications for Practice
Several important clinical implications can be drawn from this study. As it is a rare disease, PV is likely infrequently encountered by healthcare professionals and nurses. It is important to properly, and adequately assess the treatment, and care needs of PV patients. Paying attention to this situation will directly affect the quality of patient care as well as increase the effectiveness of nursing services. The real problems of the patient may be ignored, or the patient may not be able to express them. In addition to treating the physical health problems experienced, the ability of nurses to anticipate the psychological or social effects of the disease and provide or refer the patient for appropriate care, treatment, support, and counseling is crucial. This study will provide nurses who do not have the opportunity to firsthand listen to the problems of PV patient’s important knowledge about appropriate care for these patients. Our results will aid nurses in the care, treatment, and support of PV patients. We believe that this study will increase awareness of nurses who have never had the opportunity to care for PV patients.
Implications for further research
Further research on this subject will benefit nurses in determining planned, efficient, and continuous care. Patient quality of life can be improved by transferring and sharing the results obtained from such research.
Conclusion
Although PV is more common in some societies, it is generally considered a rare disease. Patients’ problems are chronic, and care demands need to be met. It is vital to plan for holistic care and treatment for patients. Patients should be provided with support regarding learning to live with the disease both now and in the future. This support should be in the form of treatment, care, counseling, and discharge planning when needed. Doctors, nurses, dieticians, and psychologists should work together when necessary to provide the best possible care for the patient. Because PV is a rare disease, nurses may not have previously experienced how to fully manage the care and follow-up of patients. However, by allocating sufficient care time to the patients and communicating more effectively, patient problems can be monitored, and quality care services can be offered. Discharge education can provide training on the problems that the patient may encounter at home. Future research is needed on this subject.
Footnotes
Acknowledgements
The authors would like to thank the institution administrators at the Ege University Medical Faculty Hospital where the research was conducted and all participants who agreed to participate in the study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical Approval
Ethics committee of Ege University Medical Faculty Hospital (Decision no: 19-10.1T / 5).
