|Year : 2018 | Volume
| Issue : 2 | Page : 156-161
Effect of systemic lupus on patient’s self-esteem and quality of life
Enaam Abd El latif1, Zeinab Hassan1, Amany Gomaa2
1 Psychiatric Mental Health Nursing, Faculty of Nursing, Fayum University, Egypt
2 Community of Health Nursing, Faculty of Nursing, Fayum University, Egypt
|Date of Submission||04-Feb-2018|
|Date of Acceptance||07-May-2018|
|Date of Web Publication||12-Nov-2018|
Psychiatric Mental Health Nursing, Faculty of Nursing Fayum University
Source of Support: None, Conflict of Interest: None
Introduction With improvements in mortality in systemic lupus erythematosus, the functional status of these patients, assessed using health-related quality of life instruments, is increasingly being recognized as an important outcome measure in clinical research. Domains of health-related quality of life of particular importance to patients with systemic lupus erythematosus include fatigue, ability to work, good health, independence, social and family life, learned helplessness (reflecting the unpredictability of lupus), pain, and the home environment.
Aims This study aimed at assessing the effect of systemic lupus on self-esteem and quality of life of patients with systemic lupus.
Patients and methods A total of 40 patients with systemic lupus were selected from a rheumatoid out-patient clinic at Ain Shams University hospitals. They answered three questionnaires, including self-esteem scale, quality of life scale, and sociodemographic datasheet.
Results Of all the studied sample, females represented the higher percentage with 75%, 70% had severe degree of disease, 55% had higher percentage of weight gain, most of them were single, and most of them had deformity (72.5%). Results also indicated that there is a statistically significant negative correlation between self-esteem and systemic lupus and between quality of life and systemic lupus. Statistically significant positive correlation was found between quality of life and self-esteem.
Conclusion This study concluded that the prevalence of systemic lupus is much higher among women in this Egyptian sample, and it significantly correlates negatively with both self-esteem and quality of life. Significant positive correlation was between quality of life and self-esteem. The study recommends providing patient with booklet about address of center to serve patients with systemic lupus. Make health education for women around 30 years of age to protect themselves from systemic lupus complication and increase their quality of life. Future studies with different methods, such as interview and focus group, could be used to achieve in-depth knowledge regarding systemic lupus.
Keywords: quality of life, self-esteem, systemic lupus
|How to cite this article:|
latif EE, Hassan Z, Gomaa A. Effect of systemic lupus on patient’s self-esteem and quality of life. Egypt Nurs J 2018;15:156-61
| Introduction|| |
Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that has protean manifestations and follows a relapsing and remitting course. More than 90% of cases of SLE occur in women, frequently starting at childbearing age (Beckerman, 2015). According to the Lupus Foundation of America, at least 1.5 million Americans are living with diagnosed lupus. The foundation believes that the number of people who actually have the condition are much higher and that many cases go undiagnosed. Known simply as lupus, SLE is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe (Beckerman and Sarracco, 2012). Common symptoms include painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, feeling tired, and a red rash seen most commonly on the face. Often there are periods of illness, called flares, and periods of remission, when there are few symptoms (Sohng, 2013; Bennett et al., 2016; Tsokos, 2016).
Assessment of health-related quality of life (QOL) has become increasingly important in recent years (Bricou et al., 2016; Ng and Chan, 2017). QOL, is often defined in various ways, as a universal, ever-changing, subjective multidimensional paradigm that includes several domains. Health-related quality of life, as well as to QOLs and health status, yet discrete, takes into account mental, physical, and social aspects, patient’s satisfaction with treatment and hopes for the future (Squatrito et al., 2014).
Several signs and symptoms may interfere with QOL during periods of SLE activity, such as vasculitis causing skin rash; painful lesions and hyperemia in palms and soles, palate or limb regions; fever without infection; weight loss; headache; alopecia; asthenia; mialgia; eye problems; hepatomegaly; splenomegaly; and adenopathy (Cohen et al., 2014). Although the etiology remains unclear, the disease is strongly influenced by genetic, hormonal (estrogen), environmental (ultraviolet radiation, drugs), infectious (viral), and psychological stress factors, which participate in its pathogenesis (Da Costa et al., 2012). SLE is one of the most common autoimmune diseases in young women, with the highest incidence in the age group of 15–40 years, at a ratio of six women for each man. Therefore, the odds of developing this predominantly female disease differ between sexes (Yazdany, 2015; Rinaldi et al., 2016).
The QOL issue incorporated into the heath practice of professionals has been designated as health-related QOL and used in clinical setting to express the physical and psychosocial effect caused by physical and biological changes produced by disease and therapies that interfere with daily life conditions (Dobkin et al., 2012). The attempt to achieve QOL, as well as seeking to define it, has followed the historical and cultural development of humans (Dobkin et al., 2013). The QOL construct is very comprehensive, reflecting the historical moment, social class, and culture of the individual, as it comes from experience, knowledge, and values both individual and collective (Dobkin et al., 2011). One definition of QOL has been proposed by a study group on QOL of the WHO, WHO Quality of Life Group (WHOQOL): ‘An individual’s perception of his/her position in life in the context of the culture and value systems in which he/she lives, and in relation to his/her goals, expectations, standards and concerns.’ Women will experience physical changes, such as rashes or a cushingoid appearance, which can trigger feelings of low self-esteem, depression, and anxiety at significantly higher rates than those of healthy women (Edworthy et al., 2013).
Significance of the study
Systemic lupus is a morbidity risk effect that impairs Quality of life and causes disability with associated Reductions in productivity and loss of employment (Flesher et al., 2015). In addition, it affects emotionality, leading to frustration and feelings of hopelessness. These adverse effects and complications can lead to significant functional and emotional challenges (Haupt et al., 2015). Patients often experience a high degree of psychological symptoms, including anxiety, depression, mood disorders, and decreased health-related QOL (Roseman et al., 2015).
Since significant positive changes in self-esteem, psychosocial functioning, anxiety, depression, difficulty in coping, social dysfunction and sleep problems were. Hence significant functional and emotional challenges resulting from symptoms, adverse effects, and complications may include anxiety, depression, mood disorders, and decreased health-related QOL.
| Aim of the study|| |
This study aims to assess the effect of systemic lupus on self-esteem and QOL in patients with systemic lupus.
- Is there a relation between systemic lupus and patient’s self-esteem?
- Is there a relation between systemic lupus and patient’s quality of life?
- Is there a relation between self-esteem and patient’s quality of life?
A descriptive correlation design was used in the current study.
Setting of study
The study was conducted in out-the patient clinic at Rheumatology Ain Shams University hospital.
This study was carried out on 40 patients with systemic lupus, who agreed to participate in the research, using purposive and accidental sampling in an out-patient clinic at Rheumatology Ain Shams University within a period of 2 months at designated days of Monday and Thursday.
- Their ages ranged from more than 20 years to less than 40 years.
- Patients have systemic lupus only.
Tools for data collection
The researcher prepared a self-report structured interview questionnaire to be used in this study.
- Personal and medical data: It was developed by the researchers to elicit information about patient’s age, sex, qualifications, degree of disease, period of disease, complication of disease, and marital status.
- Self-Esteem: this scale was originated by Shrauger (1990) and validity by Mohamed Adel. It contained 48 items designed to assess two domains (positive item and negative items). Response was based on a four-point Likert scale, ranging from (strongly agree=4, agree=3, strongly disagree=2, to disagree=1.
- QOL scale: this scale was originated by World Health Organization Quality of Life (1996) and validity by Ahamed, Beshera. It contains 26 items designed to assess four domains (physical health, psychological health, social relationship, and environment). Response is based on a five-point likert scale, ranging from not always=0, little=1, pass=2, a lot of=3, to profound=4.
Limitations of the study
In this study, there was a lack of randomization in allocating participants. There were no direct interviews to verify the results of the questionnaires. The sample in this study is not fully representative of Egyptian population.
| Result|| |
[Table 1] shows that half of the study sample was aged between 20 and 30 years (50%), three-fourth (75%) of the studied sample was females, half (50%) of the sample had bachelor’s degree, whereas approximately half (47.5%) of the sample was single.
[Table 2] demonstrates that approximately three-fourth (70%) of the studied sample had severe degree of disease and more than half of the sample (55%) had increase in weight after cortisone treatment.
[Table 3] shows that there was a statistically significant negative correlation between self-esteem and systemic lupus (r=−0.786 at P=0.001).
|Table 3 Correlation analysis between self-esteem and systemic of sample (N=40)|
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[Table 4] shows that there was a statistically significant negative correlation between QOL and systemic lupus: for health (r=−0.562 at P=0.001), for psychological health (r=−0.458 at P=0.001), for social relation (r=−0.628 at P=0.001), for environment (r=−0.554 at P 0.001), and for overall (r=−0.581 at P=0.001).
|Table 4 Correlation analysis between quality of life and systemic lupus (N=40)|
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[Table 5] shows that there were a statistically positive correlation between all domains of QOL and self-esteem.
|Table 5 Correlation analysis between quality of life and self-esteem (N=40)|
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| Discussion|| |
SLE is a chronic inflammatory disease that has protean manifestations and follows a relapsing and remitting course. Most of the cases of SLE occur in women, frequently starting at childbearing age. Systemic lupus morbidity risk affect and which is a great threat to women within their childbearing age. It impairs quality of life and causes disability, with associated reductions In productivity and loss of employment. Systemic lupus affects emotionality, leading to frustration and feelings of hopelessness. These complications can lead to significant functional and emotional challenges. The aim of the study was to assess the effect of systemic lupus on self-esteem and QOL. The current study revealed that two-third of the sample was females and a quarter of the sample was males. This result is agreeable to another study by Kozora et al. (2015), which indicated that most of the sample were females whereas only a few were male. In the current study, results showed that age was less than thirty in half of the sample, and this agreeable with Zamora et al. (2017), who mentioned that the age ranged from 16 to 42 years, with mean of 28.6±6.6 years. The current study revealed that just less than half of the sample was single, which constitutes a big problem for their future possibility of getting married and as a consequence would affect their self-esteem. This result was agreeable with Silva and Amadei (2016), whose sample showed that just less than half of the sample was single. The result of the present study indicated that there was statistically significant relation between systemic lupus and decrease in self-esteem, which is agreeable with Fortin (2014) and Hamdy et al. (2016).
The level of education appears to be associated with QOL. In all participants, the relevant results were seenThose with higher levels of education, who showed Better perception of QOL in physical, psychological, Level of independence, and environmental domains. Higher levels of education among women with SLE determine the adoption of cognitive and behavioral strategies to better cope with situations, representing higher level of mental preparation and shifting the focus of emotional problems. Therefore, the higher the education, the better the perceived QOL of women with SLE, in the domains indicated (Martins, 2007). According to reports from participants themselves, the most significant limitations affecting the relationship with their partners and family members included pain, fatigue, stress, decreased self-esteem, altered self-image, decreased libido, physical disability, medication use, and need for support from others.
The result of the present study reported that higher disease activity scores were associated with lower QOL scores in the physical (P=0.001) and psychological domains (P=0.01). Moreover, the current study showed that there was a statistically significant negative correlation found between QOL and systemic lupus, for physical health domain (r=−0.562 at P=0.001). Moreover, the current study result showed that there was a statistically significant negative correlation found between QOL and systemic lupus for psychological domain (r=0.511 at P=0.001). This result agreed with Shahin et al., 2012, who reported that systemic lupus can potentially affect multiple organ systems, impair QOL, and lead to significant psychological distress in patients with systemic lupus. The current study showed that there were statistically significant positive correlations found between QOL and self-esteem: for physical health (r=0.666 at P=0.001), for psychological health (r=0.511 at P=0.001), for social relation (r=0.751 at P=0.001), for environment (r=0.616 at P=0.001), and for overall (r=0.669 at P=0.001). Nicassio et al., 2012, reported compatible results and revealed that there were positive significant relationships between components of QOL (except for physical form physical well-being and peer relation and support) and self-esteem. This result (Navarrete-Navarrete et al., 2010; Kazemi et al., 2016) was similar to the results of many other studies in Iran and other countries. Studies have shown that self-esteem has positive significant relationships between components of QOL in adults who have a positive feeling about themselves, have a higher QOL, and are better able to handle their SLE condition.
The relations with the self-esteem
The results of the present study reported that there was a statistically significant negative correlation found between self-esteem and SLE (r=−0.786 at P=0.001), which is agreeable with the results of a clinical-qualitative study in Brazil (Abu-Shakra et al., 2016). It was dedicated to a category of self esteem questions because lupus is a disease that can strongly influence how the patients look, how they feel and how they feel about how they look. In the present study, the interviewees’ reports coincide with the literature data, which point some features as being very much important for the indispensable rebuilt of their own concept or image (Akkasilpa et al., 2010). Particular lupus phenomena, such as weight gain and joint deformities, lead to unavoidable change in the mental representation regarding their body. New images reflected by patients with lupus in the mirror, day-to-day, can be unappeasable (Auerbach et al., 2013).
However, in a larger sense, the corporal self-image is only a part of the global self-esteem that marks an individual. According to the clinical experience, a complex phenomenon is observed that comprehends feelings, conceptions, and mental representation of one has of oneself (Hyphantis et al., 2011). It is the mental picture of one’s own body and other personal features, which a person’s forms, owing to several reasons, along the course of life (Jolly et al., 2014).
Patients and health professionals know that even in the absence of disease manifestations, some symptoms,such as fatigue, may abandon who suffers to experience a less active life and invariably to be less able of having QOL (Kozora et al., 2015). Lupus symptoms and signs can symbolize an insidious and imperceptible way of injuring or destroying the personal integrity. Self-esteem (Lash, 2014; Stanton et al., 2017). From this perspective, the interviewees remarked that their relationships between systemic lupus and patient’s self-esteem, and patient’s QOL.
| Conclusion|| |
This study concluded that the prevalence of systemic lupus is much higher among females in this Egyptian sample, and significantly correlates negatively with both self-esteem and QOL. Significant positive correlations were between QOL and self-esteem.
- Make health education program for women around 30 years of age to protect them from Systemic Lupus complication and increase their QOL.
- Provide patient with booklet about address of center to serve patients with systemic lupus.
- Future studies with different methods, such as interview and focus group, could be used to achieve in-depth knowledge regarding systemic lupus.
- Conducting additional studies on larger samples from a wider range of participants.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]