Abstract

Objective

Patients with epilepsy (PWE) may experience emotional difficulties and distress if they cannot cope consistently with the emotional and physical challenges of having a seizure. This study was conducted to examine the relationship between alexithymia and life satisfaction in PWE.

Methods

This study was conducted with 207 PWE in a hospital in eastern Türkiye. Data were collected using the “Individual information forms”, “Toronto Alexithymia Scale”, and “Satisfaction with Life Scale”. Descriptive statistics, t-tests, ANOVA, correlation, and regression analyses, and post-hoc LSD analyses were employed for data evaluation.

Results

In the present study, the alexithymia total mean score of the PWE was 58.01±9.07, the total mean score of “difficulty identifying feelings” was 19.84±5.82, the total mean score of “difficulty describing feelings” was 14.42±3.30, and the total mean score of “externally oriented thinking” was 23.75±2.88. The total mean satisfaction with life score was 13.82±4.23. A significant negative correlation was found between total alexithymia and life satisfaction scores of PWE, who participated in the study (F=11.87; p<0.05).

Conclusion

It was found that PWE had high alexithymia levels and lower life satisfaction levels. As the total alexithymia score increased, the total life satisfaction score decreased.

INTRODUCTION

Epilepsy is a condition characterized by sudden, recurrent epileptic seizures that are not triggered by a definable act and that occur as a result of abnormal and excessive electrical discharge of neurons in the cortex.¹ Epilepsy, which affects more than 45 million people worldwide, is among the top five neurological disorders that cause disability and death over time.²

The diagnosis of epilepsy is a health issue that leads to both psychosocial and clinical problems. The sudden occurrence of seizures causes individuals to feel out of control, which negatively affects the quality of life of patients by causing high levels of anxiety, stress, and depression.³

Patients with epilepsy (PWE) may experience emotional difficulties and distress if they cannot cope consistently with the emotional and physical challenges of having a seizure.⁴ Although alexithymia has been proposed as the underlying factor of many psychosomatic diseases, studies have identified functional disorders and lesions in the brains of epileptic patients that are similar to those found in alexithymic patients. It has also been demonstrated that individuals with epilepsy have difficulty expressing their thoughts and feelings, similarly to alexithymic individuals.^{5, 6} In a study conducted with epileptic patients in Russia, it was reported that the patients had high alexithymic characteristics and that alexithymic features had a maximum effect on psychopathological variables.⁷ Alexithymia is a concept of Greek origin derived from the combination of words meaning “a; abstinence, lexis; word, thymos; feeling” and means “absence of words for emotions”.⁸ In addition, alexithymia is characterized by difficulty expressing all feelings at emotional, behavioral, physiological, and subjective/experiential levels.⁹ Individuals’ suppression of their emotions or inability to express what they have experienced increases anxiety and stress, negatively affecting the immune system, disrupting treatment compliance, and quality of life.¹⁰ Quality of life in epilepsy is a broad concept that includes personal well-being and implies a high overall level of happiness and well-being in life.¹¹

Satisfaction with life is defined as the degree of positive evaluation of the overall quality of one’s current life as a whole. In other words, it is individuals’ subjective evaluation of how much they love the life they live and how happy they are in the cognitive and emotional dimensions.¹² The life satisfaction of individuals diagnosed with a chronic disease decreases significantly due to some symptoms and complications caused by the disease.¹³

It is also stated in the literature that there is an inverse relationship between life satisfaction and the presence of chronic diseases.¹⁴ Epilepsy, which is a chronic disease, changes the lives of individuals and their families affects the way individuals with epilepsy express their emotions and their satisfaction with life.¹⁵ Alexithymia, which is defined as the difficulty in recognizing and expressing emotions, is a common personality trait found in both healthy and ill individuals.¹⁶ In the studies reviewed, it was found that the incidence of alexithymia in individuals with epilepsy ranges between 26% and 76%.^{15, 17-19} The literature review did not find any studies that examined the relationship between alexithymia and life satisfaction in PWE. Therefore, this study was conducted to examine the relationship between alexithymia and life satisfaction in PWE.

METHODS

Study Type

This study was conducted as a descriptive, cross-sectional analysis.

Participants

The population consisted of 450 registered PWE in a hospital in eastern Türkiye. As a result of the calculation of the sample size based on the known population, it was determined that at least 207 patients should be reached with a margin of error of 5% and a 95% confidence interval. The formula utilized was (1.96)² (0.5) (0.5) / [(0.05)² (356-1)] + (1.96)² (0.5) (0.5) (0.5). The inclusion criteria for participation in the study were as follows: individuals aged 18 years and older who had been diagnosed with epilepsy for at least six months; had no hearing or vision problems; voluntarily agreed to participate in the study; and possessed the cognitive competence to answer the questions. Individuals still under investigation or without a clinically definite diagnosis of epilepsy and with other chronic diseases were excluded. Other exclusion criteria were an inability to give informed consent, to read or speak Turkish, and moderate to severe learning disabilities as indicated by patients’ medical records or by the responsible clinician.

Data Collection

Individual information forms, the Toronto Alexithymia Scale, and the Satisfaction with Life Scale were used to collect data. The corresponding author collected the data.

Individual Information Form

It was prepared by the researcher in line with the relevant literature data and includes 10 questions related to the individual characteristics of the participants and the duration of their disease.

Toronto Alexithymia Scale

TAS-20 was developed by Bagby et al.,¹⁹ 1994. The validity study of the Turkish version of the scale was conducted by Güleç et al.,²⁰ 2009. The scale consists of a total of 20 items rated in a five-point Likert-type scale. In its Turkish version, the scale consists of three subscales: “Difficulty identifying feelings”, “Difficulty describing feelings,” and “externally-oriented thinking”. Total scores range from 20 to 100, with higher scores reflecting higher levels of alexithymia. TAS-20 scores are considered 61 and above alexithymic, 52-60 are considered borderline alexithymic, and below 51 are considered normal. When the Turkish validity and reliability findings were examined, it was determined that the scale had a three-factor structure and the total Cronbach’s alpha value was 0.78. When the cut-off point of the scale is examined, it is seen that if the “pure alexithymic group” is to be studied, it will be necessary to take 59 as the top score.²¹ In our study, the Cronbach’s alpha value was 0.74.

Satisfaction with Life Scale

The Satisfaction with Life Scale is a five-item self-report scale that measures an individual’s global satisfaction with life.²² Dağlı and Baysal²² conducted a Turkish adaptation study. The minimum possible score on the scale is 5, while the maximum possible score is 25. While a high score on the scale indicates an increase in individuals’ satisfaction with life, a low score on the scale indicates low life satisfaction. Cronbach’s alpha internal consistency coefficient was 0.88.²³ In the present study, the Cronbach’s alpha internal consistency coefficient was 0.82.

Statistical Analysis

The data obtained in the study were evaluated using the IBM Statistical Package for the Social Sciences (SPSS) statistics for Windows, version 22.0, (SPSS inc., Chicago, IL, USA) statistical program. Parametric methods were used in the data analysis. The relationships between the dimensions determining the scale levels of the patients were examined through correlation and regression analyses. T-test, one-way analysis of variance (ANOVA), and post-hoc (Tukey, LSD) were used to examine the differences in scale levels based on the patients’ descriptive characteristics.

Ethical Consideration

Before commencing the study, ethical approval was obtained from the Van Yüzüncü Yıl University Clinical Research Ethics Committee (decision no: 02.02.2022, date: 11.02.2022). During the face-to-face interviews, participants were provided with a form explaining the purpose of the research and the collection of data, after which written consent was obtained. Institutional permission was obtained from the concerned hospital on 22.12.2021. The study was conducted in accordance with the Declaration of Helsinki.

RESULTS

The mean age of the participants was 35.99±11.67. While 55.1% were female, 59.9% were married, 27.5% were high school graduates, 35.7% were not working, 76.8% had a moderate level of income and 53.1% did not have social security. It was found that 61.8% of the patients had had epilepsy between 1-5 years, 77.3% did not have any other epileptic patients in their families, and 69.1% did not have any other disease except epilepsy.

The total mean score for alexithymia was 58.01±9.07; the total mean score for “difficulty identifying feelings” was 19.84±5.82; the total mean score for “difficulty describing feelings” was 14.42±3.30; and the total mean score for “externally oriented thinking” was 23.75±2.88. The total mean satisfaction with life score was 13.82±4.23 (Table 1).

When the correlation analyses between total alexithymia scores, sub-scale scores, and total satisfaction with life scores were examined, a very high positive correlation was found between difficulty identifying feelings and the alexithymia total (r=0.91, p<0.05). Additionally, a high positive correlation was found between difficulty describing feelings and alexithymia total r=0.83 (p<0.05), a high positive correlation was found between difficulty describing feelings and difficulty identifying feelings r=0.72 (p<0.05), a high positive correlation was found between difficulty describing feelings and difficulty identifying feelings r=0.72 (p<0.05), a positive weak correlation was found between externally-oriented thinking and total alexithymia r=0.34 (p<0.05), a negative very weak correlation was found between satisfaction with life and alexithymia total r=-0.23 (p<0.05), negative weak correlation was found between satisfaction with life and difficulty identifying feelings r=-0.25 (p<0.05), and a negative weak correlation was found between satisfaction with life and difficulty describing feelings r=-0.31 (p<0.05) (Table 2).

Table 3 shows that the regression analysis, conducted to find out the cause and effect relationship between the total alexithymia and life satisfaction scores of PWE who participated in the study, was significant (F=11.87; p<0.05). It was found that total alexithymia score explained 5% of the change in satisfaction with life level (R²=0.05). The alexithymia total score was associated with a decrease in satisfaction with life total score (ß=-0.10).

Regression analysis was conducted to determine the cause-and-effect relationships between difficulty identifying feelings, difficulty describing feelings, externally oriented thinking, and life satisfaction total scores of PWE, who participated in the study, was significant (F=9.20; p<0.05). It was found that 10.7% of the total change in satisfaction with life was explained by difficulty identifying feelings, difficulty describing feelings, and externally oriented thinking (R²=0.10).

The analysis was conducted to find out whether the alexithymia and satisfaction with life scores of PWE who participated in the study differed according to descriptive characteristics. Significant correlation was found between the age of the patients and their difficulty identifying feelings and difficulty describing feelings, which are subscales of alexithymia (p<0.05). Total satisfaction with life scores of patients differed significantly in terms of age, marital status, economic status, social security and disease duration (p<0.05) (Table 4).

DISCUSSION

When the results obtained from the study were examined, it was found that the PWE were borderline alexithymic. The total mean score for alexithymia was 58.01±9.07. TAS-20 scores with values of 52-60 are considered borderline alexithymic.²¹ Similar to the results of our study, Choi et al.⁴ found that 26.7% of the PWE in their study had an alexithymia score between 52 and 60 and were borderline alexithymic. Similarly, Wolf et al.¹⁷ found the mean alexithymia score of 91 PWE to be 53.07, while Kaplan et al.¹⁵ found the mean alexithymia score of 82 PWE to be 56.15. When evaluated in terms of cut-off score, the groups in both studies were borderline alexithymic. In their study, Tombini et al.⁸ found the alexithymia score of PWE to be 47.6; while Myers et al.¹⁸ found the alexithymia score of 35 epileptic patients to be 50.09 and found that only 28.6% of the epileptic patients were alexithymic. These results differ from those of our study.

The literature review revealed international studies in which the alexithymia levels of individuals differed across disease groups, such as peptic ulcer, irritable colon syndrome, hypertension, Turner syndrome, asthma, chronic obstructive pulmonary disease, rheumatoid arthritis and chronic bronchitis.^{16, 23-26}

In our study, the mean scores for difficulties in identifying and describing feelings were high. The most important feature of alexithymic individuals is that they have difficulty identifying and describing their feelings. They cannot identify specific and clearly felt emotions in their inner world, and cannot describe them. They describe their feelings with simple and superficial expressions, without going deep, revealing them in the form of bodily reactions. They also have difficulty expressing thoughts clearly.²⁷ It has been shown that PWE are individuals who are passive, pessimistic, avoidant, exhausted, lazy, contented, utilitarian, purposeful, unskillful, overcontrolled, materialistic, unsharing, and shy, with little imagination and difficulty identifying and describing their feelings, which are among alexithymic characteristics.²⁸ A study conducted by Chung and Allen²⁹ involving 71 PWE showed results similar to ours, with high scores indicating difficulty in identifying feelings. Similarly, in a systematic review examining 43 studies, Monti and Meletti³⁰ stated that PWE had difficulty identifying their feelings in general and more difficulty identifying and describing their feelings in times of fear and sadness. It seems inevitable that PWE who cannot express their feelings and cannot express what they want to tell, even in an emergency, feel lonely in their families and society. For this reason, considering that emotions such as sadness, fear, and excitement can trigger epileptic seizures, it is important to manage emotional stress in PWE. Therefore, it is important to provide the necessary support to this patient group.

The mean scores of difficulty identifying feelings and difficulty describing feelings, which are subscales of alexithymia, were found to be significantly elevated in our study. Patients who were ≤30 years of age had higher mean scores in total alexithymia, difficulty identifying feelings, and difficulty describing feelings than patients who were ≥50 years of age. This result is consistent with the findings in Choi et al.’s⁴ study on PWE. The results obtained in that study are similar to those of the present study. Likewise, Yaşar and Gündoğmuş³¹ found a statistically significant positive correlation between the participants’ TAS-20 total, difficulty identifying feelings, and difficulty describing feelings subscale scores and the variable of age. The results of the present study align with those of other studies, suggesting that age may be a determining factor in alexithymia, with younger individuals potentially being more affected. The higher levels of alexithymia observed in patients aged 30 or younger may be attributed to their limited experience in identifying, describing, and regulating emotions. Furthermore, they may not have yet developed effective coping strategies for dealing with negative situations associated with living with the chronic disease epilepsy.

In individuals with a chronic disease, it is inevitable to experience a decline in life satisfaction until they adapt to the condition and the ensuing treatment process.³² Karyani et al.³³ found that individuals with a chronic disease had lower satisfaction with life. From this point of view, epilepsy, which is a chronic disease, can be considered one of the neurological diseases that affects the life satisfaction of patients due to patient-related factors, such as demographic, sociocultural, and behavioral aspects, as well as factors related to the disease and treatment, and those related to the health team and health system.

In the present study, PWE had low satisfaction with life levels. Likewise, Gandy et al.³⁴ found that 672 PWE had low mean satisfaction with life scores. The reason these patients have low satisfaction with life may be because epileptic seizures cause subjective cognitive difficulties. Similarly, in a study conducted by Sung et al.³⁵ on 270 PWE, it was reported that patients had low satisfaction with life scores and that this situation is associated with the uncertainty brought by epilepsy, epileptic seizures, the necessity of using medication and having low self-efficacy. In line with the results of our study, a 70-patient study by Aidan and Rimmerman³⁶; a 507-patient study by Villanueva et al.³⁷; and a 524-patient study by Konda et al.³⁸ all found low mean satisfaction with life scores, despite involving different populations.³⁷ Unlike the results of our study, a study conducted in the United States found that PWE had high mean satisfaction with life scores.³⁹ It is thought that this is due to cultural differences, having good financial means, a good family life, a strong social life with positive intercultural relationships, and spending their free time with hobbies that make them happy. The results support the findings of studies in the literature.

Individuals who are satisfied with their lives have fewer negative feelings (for example, anger, sadness, and anxiety), more positive feelings (for example, happiness, enjoyment and having meaningful close relationships with others), and fewer psychological and physical health problems.⁴⁰ Studies have shown that satisfaction with life is positively correlated with happiness and quality of life, and that it is negatively correlated with depression, anxiety, post-traumatic stress disorder, and lack of emotional awareness associated with alexithymia.³¹ Yang et al.⁴¹ found that individuals with a poor level of personal health and a high level of anxiety had low satisfaction with life. Both situations affect the satisfaction individuals get from life.

Regression analysis was conducted to determine the causal relationship between alexithymia total and satisfaction with life total scores of PWE who participated in the study, therefore, it was found that alexithymia total score decreased satisfaction with life total score. Similar to the results of our study found that the self-efficacy and alexithymia levels of PWE were significantly correlated in terms of developing post-traumatic stress disorder and psychiatric comorbid disease in the post- epileptic period. It has been reported that alexithymia affects quality of life, and therefore, affects life satisfaction.¹⁷ In a study conducted on individuals with post-traumatic stress disorder, it was found that high alexithymia was associated with low satisfaction with life.⁴² The study of autistic individuals revealed that alexithymia increased the depression and anxiety levels of patients, caused them to experience difficulty identifying and describing feelings, and, as a result, decreased their satisfaction with life.⁴³ A study conducted with 124 chronic hepatitis C patients stated that psychological distress, the presence of mood disorders during treatment, and chronic disease increased alexithymia levels and therefore caused patients’ life satisfaction to decrease.⁴⁴ The results of our study are in line with those of studies conducted abroad. Based on these results, it can be concluded that alexithymia affects satisfaction with life and is an important variable that should be evaluated.

Study Limitations

The study was conducted with PWE in a hospital in Türkiye. Since the study was conducted in a single center, the data cannot be generalized to all PWE.

CONCLUSION

In the present study, PWE had high alexithymia levels and low satisfaction with life levels. As the total alexithymia score of PWE increased, their total satisfaction with life score decreased. In line with these results, it can be concluded that it is vital to inform caregivers and nurses about preventing the negative situations alexithymia may cause in PWE. It is recommended to conduct similar studies on alexithymia and satisfaction with life with a larger sample size, which are thought to be effective concepts in the treatment and care processes of PWE.