Health related quality of life in a Saudi population of patients with epilepsy

Participant sociodemographics

In the present study, we evaluated the QOL of 210 participants (102 PWE and 108 healthy controls); the PWE subgroup was composed of patients from the King Fahad Medical City, Riyadh, Kingdom of Saudi Arabia.

The majority of the PWE were men; this is contrary to the population studied by Kishk et al,¹⁷ in which male PWE were reported to be relatively less frequent than women. This study did not find any statistically significant association between gender and the subgroup of participants. Furthermore, previous studies have documented the significant psychosocial impact of stigma regarding epilepsy in both genders, in addition to men’s higher social obligations and women’s sociocultural limitations.¹⁷

However, statistically significant associations were observed between the study participants and the following: age, marital status, employment, and education.

A mean age of 31.06±8.6 years was reported among the respondents, revealing that most of them were middle-aged. This is slightly higher than the mean age reported by other studies.¹⁷ Nonetheless, it can be explained by the eligibility criteria of the study in which only respondents who were 18 years old and above were eligible. The PWE group’s average age was likewise marginally lower than the control group’s.

Wang et al¹⁸and Asadi-Pooya et al¹⁹ indicated that epilepsy is linked to adverse effects on a range of aspects of PWE’s social life. Furthermore, Saleh et al²⁰ reported that individuals with seizure disorders are less socially privileged than the general population. The majority of the respondents were also married, employed, and had a bachelor’s degree. In each of these categories, the proportion of the healthy control subgroup dominated that of the PWE.

Singh et al²¹ reported that PWE tend to frequently experience marital problems, such as reduced marital prospects and poor marital outcomes. In a recently conducted study in Egypt, a relatively lower percentage of PWE had ever been married, which is consistent with previous results in which PWE had a lower rate of marriage.¹⁷ Similarly, in another cross-sectional study in Saudi Arabia, less than a quarter of the respondents would marry an individual with epilepsy, and only around half of the respondents were supportive of their children playing with an epileptic child.²² Nevertheless, less than a quarter of the respondents concur that a PWE experiences discrimination.^23,24

Regarding employment, patients with seizure disorders are typically more likely to be unemployed, notwithstanding the fact that many of them desire to work.²⁰ Moreover, the higher rates of unemployment among PWE relative to the healthy control group could be attributed to the lower reported educational levels of PWE compared to the healthy control group. For instance, approximately half of PWE respondents and only a little over 10% of the healthy control respondents only attained high school education. This is based on the assumption that individuals who have completed higher educational levels are more likely to be employed relative to those who have completed lower educational levels. Nevertheless, there is a lack of reports on the frequency of employment and workplace safety among Saudi Arabian individuals with seizure disorders.

Clinical characteristics of the PWE subgroup

In the PWE subgroup, the median age to diagnosed with epilepsy was 16.45±9.164 years, which is relatively younger than that in previous studies.²⁵

The majority of PWE respondents had focal epilepsy, with the most common type being the temporal lobe, whereas a relatively lower percentage had generalized epilepsy. This is consistent with the report of the Epilepsy Foundation, which indicated that temporal lobe epilepsy (TLE) is the most common type of focal epilepsy, accounting for approximately six out of ten people with focal epilepsy (Epilepsy Foundation, n.d.).

Additionally, TLE is commonly accompanied by a psychiatric comorbidity. In fact, people with TLE have a higher prevalence of psychiatric illnesses than those with generalized epilepsy.²⁶ According to prior studies, patients with mesial temporal lobe epilepsy (MTLE) have a higher prevalence of major depressive disorder (MDD) than the general population.^27,28 This psychiatric comorbidity raises serious concerns regarding the poor QOL among these patients.²⁹ Additionally, people with MTLE and MDD face a significant risk of suicide.²⁷

Most respondents had been experiencing seizures for at least 10 years, while some had experienced seizures for over 10 years. Approximately one-third of the patients also experience seizures monthly and annually, and a relatively smaller percentage experience weekly and daily seizures. According to Charité – Universitätsmedizin Berlin,³⁰ TLE can have long-term effects such as memory issues, learning disabilities, and emotional instability. Additionally, the inability to work, drive, or participate in sports drastically lowers the QOL for patients with TLE. This is aggravated by the fact that the medications used to treat patients with TLE frequently fail to sufficiently control the condition while still being linked to serious adverse effects. In line with this, a lower QOL is more likely the more seizures PWE experience and the longer they last.³¹

The majority of participants had drug-resistant epilepsy and were on two or more medications. Moreover, Lima et al³² highlighted the well-established association between the severity of depressive and anxiety symptoms and impaired QOL in individuals with drug-resistant epilepsy.

RAND-36 (SF-36) profile

Statistically significant differences were noted between the RAND-36 scores of both groups for the RP, RE, and GH components. Significantly higher RAND-36 scores in the RP, RE, and GH domains were reported in the control group than in the PWE group. This is consistent with the assumption that higher scores indicate better QOL and further highlights the general health perception and rule limitations due to physical and emotional health issues associated with epilepsy disorder. As indicated by Akyol et al³³ Yeni et al³⁴ and Steiger & Jokeit³⁵ PWE are at an increased risk of lower QOL and hampered social interactions brought about by social cognitive deficiencies due to neuropsychological impairment.

Among all the subscales of the RAND-36 in the PWE, the highest mean score was recorded for PF, while the lowest mean score was recorded for VT; that is, the respondents’ mean PF and VT scores can be interpreted as excellent and moderate QOL. There were no discernible differences between PCS, MCS and the respondents (PWE and healthy controls), although a favorable QOL was revealed; that is, the mean PCS and MCS were interpreted as excellent and good QOL. Furthermore, the total mean score of the RAND-36 in the PWE compared to healthy control groups indicated good QOL.

RAND-36 (SF-36) domain correlations

All SF-36 subscales showed statistically significant relationships, with the exception of the association between physical function and emotional well-being. This could be attributable to the fact that most respondents displayed relatively good RAND-36 scores; hence, the magnitude of the impact of physical function on the respondents’ condition was not as apparent. In addition, although the sample sizes of the PWE and healthy control groups were similar, the latter had a relatively larger sample size than the former. This might have had an impact on the findings of the current study.

Association of sociodemographics and patient clinical data against QOLIE-31 domains

The participants’ mean QOLIE overall score was 65.17±19.1, which is slightly higher than the overall score reported in a similar study in Jeddah.³⁶ Significant associations were observed between the following: gender and energy/fatigue, medication effect, social function, and QOLIE overall score. The association between gender and energy/fatigue is in line with the study by Tayeb et al,³⁶ in which female PWE demonstrated relatively lower energy scores than male PWE. Meanwhile, the association between gender and medication effect can be substantiated by the study conducted by Reddy (2017). This study indicated that the natural fluctuation in steroid hormones that occurs among women during the menstrual cycle substantially impacts seizure patterns and may impact drug therapy.³⁷ Large-scale epidemiological studies indicate that disruptions in social function through the occurrence of anxiety disorders are much more common among women; more so, this disparity is more prevalent in patients neuropsychiatric disorders.³⁸ Lastly, the employment factor also showed a significant association with social function. Despite being one of the most common chronic diseases, epilepsy is typically unknown to the general public and frequently associated with false beliefs. As a result, PWE frequently experience stigma and discrimination which translate to difficulty in employment, education, and socialization.³⁹ Considering the association between patient clinical data and QOLIE-31 domains, the only significant association was between seizure frequency and emotional well-being. As indicated by Tayeb et al,³⁶ PWE’s overall health-related quality of life can be affected adversely by seizure frequency. Therefore, the patient’s QOL will improve with fewer seizures.

Our study is constrained. Because this study used a cross-sectional research approach, the findings’ generalizability and response bias may be limited. Further investigation is required to evaluate AED levels and determine whether other factors such as medication compliance and the challenge in controlling seizures can also have a negative effect on QoL among Saudi PWE.

Epilepsy adversely affects the QOL of Saudi PWE, as it does in many other nations. Furthermore, the 3 most crucial variables found in this study were gender, employment, and seizure frequency. The outcomes of recent studies have also increased the use of behavioral interventions in daily practice. In addition to QOLIE³¹ and its domains, therapists and other healthcare professionals specializing in epilepsy should consider additional aspects to provide individualized therapy.

Conclusions

The quality of life of PWE is severely affected in Saudi Arabia. The factors found in this study differ from data that has already been published. These cross-cultural variances have been justified for a number of reasons, including familial support, cultural and religious views, and other factors. Therefore, bigger studies are required to verify these findings.