Health-related quality of life in adolescents with epilepsy in Montenegro
Introduction
Epilepsy is a complex widespread neurobehavioral and social condition that carries heavy social stigma. In order to achieve a true success in treatment, clinicians need to understand how individuals perceive their disorder and, where possible, to address those factors [1]. The quality of life (QOL) in people with epilepsy is determined primarily by the duration of the disease and the extent of seizure control [2]. QOL in people with epilepsy may be impaired by seizures, side effects of medication, and psychosocial problems. There has been an increasing interest in comparing QOL among people with epilepsy in different cultures [3], [4], [5], [6].
Assessing quality of life in pediatric epilepsy is especially important because both cognitive and social skills are developed in childhood. Psychiatric and psychosocial complications and comorbidities are more common in pediatric epilepsy than in other childhood chronic medical illnesses. Epilepsy also requires significant lifestyle adjustment for both children and their families [7], [8]. The severity of comorbid conditions, parental anxiety, seizure control, and number of medications are highly associated with the quality of life for these children [9]. Better definition of the factors causing this vulnerability may create opportunities to improve the long-term psychological health of a child through education, counseling, and support [10], [11], [12].
The number of adolescents living with epilepsy is increasing, and therefore, the interest in improving the QOL in this population has grown [13]. Therefore, the interest in measuring the quality of life in adolescents is also increasing [10], [11], [12], [13]. The most frequently recommended instrument for measuring health-related quality of life in adolescents with epilepsy is the Quality of Life Epilepsy Inventory for Adolescents (QOLIE-AD-48) [14]. The results with the Serbian version supported the validity and reliability of QOLIE-AD-48 instrument in youths with epilepsy as well [15]. In a study examining potential risk factors for poor health-related QOL among adolescents, Devinsky and colleagues identified that age, increased seizures severity, and neurotoxicity were most consistently associated with poor health-related QOL across domains [16]. Recent study from Brazil using QOLIE-AD-48 indicated that adolescents with epilepsy may present good QOL scores when they themselves consider the disease as being under control [17].
Based on this background, our objective was to establish potential risk factors for poor health-related quality of life among adolescents with epilepsy in Montenegro.
Section snippets
Material and methods
The study was carried out at tertiary referral clinics for pediatrics and neurology in Podgorica, Montenegro, among 104 adolescents with epilepsy aged 11 to 19 years.
The diagnosis of epilepsy was based on clinical symptoms, electroencephalography, and the findings of neuroradiological methods such as computerized tomography (CT) and/or magnetic resonance imaging (MRI/MRA) of the brain. The MRI/MRA was performed according to the epilepsy-specific protocol on a Siemens 1.5-T machine. Seizures were
Statistical data analysis
Calculation of the total QOLIE-AD-48 scores and of each subscale was performed manually according to the QOLIE-AD-48 scoring instructions [14], [15]. For statistical analysis, scale scores were created by averaging items within scales and transforming average raw scores linearly to possible values of 0–100, with higher values indicating better QOL. Missing values were replaced by the mean of the remaining items in the relevant scale unless more than 50% of items in that scale were missing.
The
Demographic and clinical characteristics of the patients
The study included 104 participants, 57 male (54.8%) and 47 female (45.2%) aged from 11 to 19 years. Demographic and epilepsy related data of adolescents with epilepsy are shown in Table 1.
The majority of participants (78.8%) were treated with only one AED, while two drugs were used in 22 (21.2%) individuals.
In addition to the neurological status, the brain CT scan and/or MRI/MRA was performed in all participants. The following was observed in 19 participants (18.3%): cerebral ischemia in four
Discussion
The mean value of the total score of QOLIE-AD-48 deviates considerably from the possible maximum, suggesting that epilepsy negatively affects the quality of life in adolescents with epilepsy. This result coincides with the results of previous studies that used this questionnaire [16], [17], [20], [21] or similar scales [22], [23], [24], [25].
Contrary to the results of other studies [16], [25], [26], [27], our study showed that gender and age had no impact on the overall quality of life.
Conclusion
Epilepsy posed a great burden on the quality of life of adolescents in our study group. The severity of the disease was the critical predictor of poor related quality of life. The lowest quality of life was among adolescents with frequent seizures. Adolescents with frequent seizures felt more stigmatized. Older adolescents were more affected by the negative consequences of disease, whereas female adolescents had better social support. Therefore, better quality of life achieved by means of
Conflict of interest
The authors have declared that no conflict of interest exist.
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