Predictors of quality of life among adolescents with epilepsy in the state of Andhra Pradesh
Objectives: Assessment of quality of life (QOL) reveals the impact of diseases and factors responsible for the impairment of quality of life. The purpose of this study was to evaluate the QOL among adolescents with epilepsy (AWE) in the state of Andhra Pradesh.
Keywords: Adolescent, epilepsy, monotherapy, quality of life, QOLIE AD-48, seizure
Epilepsy is a chronic neurological disorder characterized by an enduring predisposition to generate epileptic seizures, as well as by the neurobiologic, cognitive, psychological, and social consequences of this condition. It has been estimated that there are 65 million people with epilepsy and 80% of them are from developing countries. Control of seizures and seizure frequency is the main goal in the management of epilepsy. Fatigue, memory problems, difficulty in concentrating and thinking, drowsiness, and nervousness were observed in association with epilepsy medication. Epilepsy has been shown to impact the different domains of life such as physical and health status, employment, social and family relationships, and the quality of life (QOL). The well being of persons in all domains of functioning, including physical, psychological, social, and educational, is referred to as QOL. Previous exposure to the knowledge on QOL, response to the diagnosis of epilepsy, the stress of being alone, and the feeling of health getting worse were found to be the significant predictors of a lower QOL in our earlier study among adult patients with epilepsy.
Adolescents experience changes not only in their biology but also in the development of appropriate and healthy peer relationships. Approximately one-half of the patients who suffer from epilepsy develop it during the childhood phase. A poor QOL was observed in adolescents with epilepsy (AWE) when compared to the adolescents with diabetes, asthma, and those subjects belonging to the general population.,, Subjective evaluation of the patients might be helpful in understanding the health care system, well-being of the society, and the factors responsible for the compromised self-perception of QOL. It may also help to improve the quality of medical care, and to enhance the psychological and social support for the AWE., Earlier investigators have evaluated the QOL in AWE employing the Quality of Life in Epilepsy for Adolescents-48 (QOLIEAD-48) inventory from countries such as the United States, Serbia, Nigeria, Spain, United Kingdom, China, Brazil, and Russia,,,,,,,,, and have observed that attitudes toward epilepsy and social domains were affected in AWE. The age at onset of epilepsy, the number of anti-epileptic drugs (AEDs) being consumed, and parental depression were reported as significant predictors affecting the QOL in AWE.,,,,,,,,, Apart from the issues that arise due to the disease, the concerns that affect the QOL among AWE were in the difficulites that arose in developing friendships and in dealing with problematic family relationships. These are in contrast to the concerns in adults, which include problematic relationships with spouse or partner, and the responsibility of fulfilling family commitments. In adults with epilepsy, factors such as greater number of seizures, a longer duration of seizures, an earlier age at seizure onset, dealing with the side effects of seizure medications, the lack of adherence to medications, the associated depression or anxiety, the lack of social support, the stigma associated with epilepsy, and concerns regarding employment were reported as being the predictors of QOL. In adolescents, epilepsy has been shown to impact peer relationships, as well as the development of independence and autonomy. An age between 14–17 years, the presence of active epilepsy, a greater seizure severity, the compulsion to take a higher number of medications, a longer duration of illness, and the associated morbidity in learning new techniques based on additional information learnt, were observed to be the predictors of QOL in AWE. In India, to the best of our knowledge, there has been no published report on the QOL in AWE as well as on the validation of QOL using the Quality of Life in Epilepsy for Adolescents AD-48 (QOLIE-AD-48) inventory. In this study, we have evaluated the QOL score in AWE using the QOLIE-AD-48 scale, and have investigated the variables responsible for a poor QOL in AWE.
The institutional ethics committee issued the clearance for the study. Assuming reliability of 0.7 as ‘acceptable,’ and the inter-observer reliability to be 0.8, α = 0.05 and β = 0.2, the calculated sample size for the two raters was 117. One hundred fifty AWE were recruited for the study. The inclusion criteria included AWE, aged between 13 and 19 years, who were on anti-epileptic (AED) regimen for a minimum period of 1 year, and were willing to participate in the study. The exclusion criteria included patients who were hospitalized; AWE with significant visual and/or hearing impairment, or those with behavioral, conduct, or mental disorders; those with a history of having undergone a craniotomy or a craniectomy; those on concomitant medication with central nervous system effects; those with a progressive neurological illness or chronic medical condition (asthma, hypertension, chronic renal failure, chronic lung disease, thalassemia, hypothyroidism, etc.).
Epilepsy was diagnosed based on the history and physical examination supplemented by the electroencephalogram, and neuroimaging findings. Data on demography, socioeconomic status, and family history of epilepsy were acquired using a structured questionnaire. Clinical variables of AWE such as the age at onset, time of onset, frequency of seizures, duration of seizures, and duration of medications were collected from the case sheets. AWE taking a single drug were termed as being on ‘monotherapy,’ and, those taking two or more drugs were considered to be on ‘polytherapy.'An educational status of ‘studying in the 6th to 12th standard’ was considered as being in high school. Seizures were classified as simple partial, complex partial, generalized tonic–clonic, myoclonic, atonic, and secondary generalized tonic–clonic, based on the classification proposed by the International League Against Epilepsy (1981). The seizure frequency was classified into two categories, i.e., ‘frequent seizures’ (seizures experienced within the past 1 year) and ‘seizure-free’ (seizure free for at least 1 year).
AWE were administered the Telugu version of the QOLIE-AD-48 originally developed by J.A. Crammer. The original questionnaire was translated into Telugu, and then the results were translated back to English with the help of bilingual experts. QOLIE-AD-48 is a specific, sensitive, and reliable measure and has been translated and validated in populations of the United States, United Kingdom, Serbia, Nigeria, Spain, United Kingdom, China, Brazil and Russia.,,,,,,,,, The QOLIE-AD-48 contains 48 items divided into eight subscales: Epilepsy impact (12 items), memory/concentration (10 items), attitude toward epilepsy (4 items), physical functioning (5 items), stigma (6 items), social support (4 items), school behaviour (4 items), health perception (3 items), and finally, a collated total score. The raw numbers of a five-point Likert scale for QOLIE-AD-48 domain scores were recorded and converted into a 0–100 point response scale. Higher scores indicated a better QOL.
The continuous variables were presented as mean and standard deviation, and qualitative variables as proportions. The normal distribution of continuous variables was tested by the Kolmogorov–Smirnov test. The Mann–Whitney U test was employed to compare the medians of non-normal distributed continuous variables. The proportions were compared using the chi-square test. Association of variables was tested using Pearson's correlation and multiple regression analyses. Internal consistency was evaluated by Cronbach's alpha, and reproducibility by intraclass correlation coefficient. All computations were carried using the IBM Statistical Package for the Social Sciences statistics for windows, version 20.0 (IBM Corp., Armonk, New York, USA).
The mean age of AWE was 15.86 ± 2.14 years. Among the AWE, 56% were male and 44% were female patients. The majority of AWE followed the Hindu religion (84%), lived with both their parents (95%), and were born to non-consanguineous parents (71%). The majority of AWE were urban residents (53%);this figure was followed by those of rural (45%) and semi-urban (2%) residents. Only 15% of AWE had a family history of epilepsy. A higher proportion of AWE (75%) were high school educated as compared to being primary school (25%) educated. AWE had an average monthly income of Rs. 11993 ± 9407 [Table 1].
The mean age at onset of the seizure in AWE was 15.86 ± 2.14. The majority of AWE had onset of seizure in the age group of 0–10 years (58%). This was followed by the occurrence of seizures in the age group of 11–19 years (42%). A higher proportion of AWE (62%) had onset of seizures during the day-time, whereas 38% of AWE had onset of seizures during the night-time. The predominant type of seizures among AWE was generalized tonic–clonic seizure (45%); this was followed in frequency by a simple partial seizure (34%), complex partial seizure (8%), myoclonic seizure (8%), atonic seizure (8%), tonic seizure (2%), and clonic seizure (1%). A higher percentage of AWE (69%) had the disease for 1–8 years duration while the remaining 31% had the disease for a duration of 9–17 years. The majority of AWE (56%) were seizure free for the last 1 year. The majority of AWE had seizure frequency approximately once a month (36%), followed by more than one seizure in a month (4%), more than one seizure in a day (2%), and less than one seizure in a week and day (1%). A higher percentage of AWE were on monotherapy (55%) than on polytherapy (43%) [Table 2].
The mean total score of QOL in AWE was 72 ± 15. Higher mean scores were observed in subscales such as social behaviour (81 ± 20) and social support (80 ± 24), followed by physical functioning (79 ± 21), memory and concentration (76 ± 19), epilepsy impact (72 ± 20), stigma (68 ± 23), health perception (65 ± 13), and attitudes toward epilepsy (41 ± 17) [Table 3].
Significantly elevated mean scores of total QOL and subscales, except in the subgroup of health perception, were observed in high school educated adolescents when compared to the primary school educated AWE. Significantly higher mean scores in the total QOL and its subscales were observed among those subjects who were seizure free when compared to those were in the group of seizure frequent AWE. AWE who were on monotherapy showed higher mean scores in total QOL and subscales than those on polytherapy, except in the subscales of epilepsy impact, attitudes toward epilepsy, social support, and health perception [Table 4].
In the multiple regression analysis, variables such as education, seizure frequency, and polytherapy were significant predictors of a poor total QOL in AWE [Table 5]. All these variables, contributed to the 45.4% of variation in dependent variable, as shown by the adjusted R2 (0.454). The confounding effects of variables such as age, gender, and income were controlled in the regression analysis.
Cramer et al., using the QOLIE-AD-48, reported the Cronbach's alpha to be >0.7 (0.73–0.94) for all subscales except health perception (0.52) and a test–retest reliability of 0.83. Zashikhina and Haggolf reported the Cronbach's alpha to be >0.7 for subscales such as memory/concentration, attitudes toward epilepsy, and total quality of life, and also reported a low Cronbach's alpha score in the subscales such as impact (0.41), physical functioning (0.42), social support (0.68), school behaviour (0.49), and health perception (0.18). In our study, the Cronbach's alpha for total QOL was 0.973 and a value of >0.7 was observed for the subscales such as epilepsy impact (0.940), memory/concentration (0.942), attitude towards epilepsy (0.886), stigma (0.786), and school behaviour (0.912). A lower Cronbach's alpha score was observed in subscales such as physical functioning (0.159), social support (0.43), and health perception (0.228). The estimated test–retest reliability was 0.987 for summary (total) score in the present study. To the best of our knowledge, this is the first study to validate the QOLIE- AD-48 in the Indian population.
The QOLIE AD-48 scale is a robust tool with good psychometric characteristics for the evaluation of QOL in AWE. Cramer et al., had observed the total QOL score of 67.7 ± 17.3 in the American AWE. Siqueira et al., reported the total QOL score of 68.73 ± 15.09 in the Brazilian AWE. In Russian AWE, Zhashikhina and Haggolf had showed a total QOL score of 67.1 ± 7.1. AWE from China, Brazil, and Serbia showed the total QOL scores of 65.6 ± 14.1, 69.91 ± 11.44, and 83.9 for boys, respectively and a QOL of 83.06 for girls. In the present study, we have observed a total QOL score of 72 ± 15 among AWE, which is within the range of scores reported in the other studies.
The bigger the score, the better is the QOL in QOL measurement tools. In the present study, the lowest scores were observed in subscales such as attitude toward epilepsy and health perception. Earlier investigators had also observed the lowest score in attitude towards epilepsy.,,,, Other domains that had shown the lowest score with respect to the QOLIEAD-48 in the literature were memory, concentration, physical functioning, and social support.,
A higher mean total QOL score was observed in female subjects who were seizure free when compared to the male ones, as well as those with seizure frequent AWE.,, In our study, we did not observe any gender differences in the total QOL and subscale scores. A significantly higher mean total QOL and subscale scores were observed in seizure-free patients and in monotherapy-treated patients when compared to the seizure-frequent and polytherapy-treated AWE. Among the AWE, high school educated, when compared to the primary educated patients, showed a higher mean score in the total QOL scale and the various subscales [Table 4].
Earlier investigators had reported that variables such as the age, epilepsy severity, side effects of AED, socioeconomic status, number of AEDs, epilepsy concerns, female gender, greater seizure severity, duration of illness, general psychopathology, parental mood, co-seizure frequency, presence of special educational needs, worry of developing a seizure, age at onset of epilepsy, and fear of epilepsy were significant predictors of poor QOL in AWE.,,,,,, In our study, education, seizure frequency, and polytherapy were significant predictors of poor QOL in AWE. Education was positively, and seizure frequency and polytherapy were negatively associated with total QOL in the present study. This suggests that as the education status increases and lesser is the frequency of seizures and the usage of polytherapy, the QOL increases. This also indicates that achieving a seizure control, encouraging monotherapy, and enhancing the educational levels may improve the QOL in AWE.
It was observed that the cognitive effects of epilepsy and their effects on the school and examination attendance could impact educational attainment in AWE. Learning disabilities to the tune of 41–82% were observed in AWE. A longer duration of epilepsy, the requirement of special educational classes, and a history of repeating a grade in school were found to be the risk factors responsible for the incidence of memory and concentration lapses in AWE. In our study, we also found significant association of the educational subscales with the memory and concentration subscales, as observed in the correlation analysis [0.268, P < 0.01]. It was proposed that there is a need to design new educational programmes based on the evaluation of adolescents' expectations. Better access to education among adolescents was associated with a higher QOL. A significant relationship between the educational status and QOL was observed in AWE. In our study, a higher mean score in the total QOL and all its subscales were observed in high school educated than in primary school educated AWE [Table 4]. Education was significantly associated with the total QOL score in our present study [P < 0.01, [Table 5].
Experience of injury, incontinence, fear, emotional distress during the seizure episode and intermittent memory deficits, tiredness, and headaches after the seizure attack was over, were observed in people with epilepsy. Seizure-free adolescents who had a good perception of seizure control and had not experienced seizures in public places presented with better QOL scores. In a clinical trial on AEDs, only those who were seizure free for the final 12 weeks of a 28-week trial of follow-up had reported an improvement in the QOL. In our study, higher mean score in total QOL and all subscales was observed in seizure-free than seizure-frequent AWE [Table 4]. In our study, seizure frequency was found to be a significant predictor of the total QOL in AWE [Table 5].
Monotherapy with antiepileptic drugs is considered as a standard practice for the medical management of epilepsy, and if it fails in achieving seizure freedom, the adjunctive therapy is used. In the present study, 52% of AWE were taking monotherapy and the remaining 48% were taking polytherapy. The frequency of polytherapy reported in Indian studies ranged from 30 to 47%.,, The polytherapy option is used for refractory seizures due to a poor localization-related occurrence of epilepsy. It was reported that, in India, more peripheral centers practice polytherapy than monotherapy, when confronted with a poor control of seizures in their patients.
A significant association of polytherapy with QOL has been reported in literature.,,, In the present study, a significant correlation of polytherapy with QOL was observed (Sβ = −0.08, P < 0.01). A lower QOL was reported in those subjects on polytherapy than those on monotherapy.,,,,, In our study, lower mean scores in the total QOL scale and all subscales were observed in AWE who were taking polytherapy rather than monotherapy [Table 4].
Various studies have reported that a high cost, adverse reactions, less safety profile, less tolerability, an increased coexisting depression, the presence of drug toxicity or drug-to-drug interactions, the occurrence of non-compliance, emotional disturbance, increased conduct disorders, social aggression, anxiety or a withdrawn status, and difficulties in cognitive function, associated with polytherapy, that were responsible for the low QOL scores observed in these patients.,,,,, In our study, most of the AWE were beneficiaries of free medicines distributed by the Friends of Sri Venkateswara Institute of Medical Sciences (SVIMS) society that is associated with SVIMS, and were drug compliant. No drug-related adverse events were reported by the AWE during the study period.
In the present study, AWE showed a good score in the total QOL scale as well as in the various subscales except for those associated with the attitudes toward epilepsy and its stigma. A higher mean score in the total QOL and the various subscales was observed in high-school educated, seizure free adolescent chidren, who were on monotherapy, when compared to the primary school educated, seizure frequent, and polytherapy taking AWE. Education, seizure frequency. and polytherapy were the significant predictors of a poor QOL in AWE. The results of the present study suggest that, apart from seizure control, encouraging monotherapy and enhancing educational levels may improve the QOL in AWE. The limitations of the study are that the results of the study represent only the test population located in a particular geographical area consisting of a medically and socially heterogenous population. Thus, it is not certain if the results of this study may be extrapolated to the general population.
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Conflicts of interest
There are no conflicts of interest.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]