Epilepsy, the second most common neurological condition after headache, is characterized by recurrent seizures of cerebral origin. Fifty million people in the world and an estimated 6 to 10 million people in India suffer from epilepsy.1-3 It is of concern that the diagnosis and management of epilepsy is often suboptimal in developing countries and in the European region 4-5

To an affected person, the burdens of epilepsy include physical hazards from unpredictable seizures, but also social exclusion as a result of negative attitudes towards people with epilepsy (PWE).6 Stigma may even preclude adults from marrying or PWE can be denied employment even when seizures would not render their work unsuitable or unsafe.7 Although 75-85% of PWE’s in developed countries reach seizure control through individually tailored antiepileptic drug (AED) therapy, up to 25% of all patients suffer from refractory forms of epilepsy.8 Hence the disease may prevent those PWE from living a completely self-reliant life.9 In the last two decades, the number of research articles that focus on epilepsy as a disease associated with psychological consequences like anxiety, depression or low self-esteem has increased and demonstrated the detrimental impact of epilepsy on the individuals’ healthrelated quality of life (HRQoL).10 Quality of life (QOL) is a broad, multidimensional concept that usually includes subjective evaluations of both positive and negative aspects of life.11

The concept of health-related quality of life (HRQoL) and its determinants encompass the aspects that can be clearly shown to affect health- either physical or mental. On the individual level they include physical and mental health perceptions and their correlates, notably health risks and conditions, functional status, social support, and socioeconomic status. Quality of life (QOL) is worse in epileptic patients than in the general population, it is comparable or worse in patients with epilepsy than that in patients with other chronic conditions; and it is similar to that of healthy persons when patients with epilepsy are well-controlled.12 QOL of patients with epilepsy depends upon effectiveness of antiepileptic therapy and disease duration. Frequency of seizures seems to be one of the most relevant determinants of poor quality-of-life scores.13

People with epilepsy have been shown to report a poor QOL because they are more likely to have poor self-esteem and a high level of anxiety and depression. In some patients, the social stigma and impact on QOL can pose a greater challenge than the clinical severity. Health-related quality of life (HRQOL) is recognized as an important outcome in epilepsy treatment. Research assessing the QOL associated with successful treatment of epilepsy is far behind that of other chronic conditions such as cancer, diabetes, and cardiovascular disease. Very few studies have been carried out on QOLIE-31 in India and research in this area will identify factors affecting QOL and may lead to strategies that improve the management of patients with epilepsy. The importance of assessing psychological well-being and quality of life of individuals with epilepsy, especially in developing countries has traditionally been ignored. In recent years, assessing quality of life with chronic illnesses has become an important concern. Quality of life can be assessed by generic or disease specific measures. Generic measures assess function, disability, and distress resulting from general ill health and their main advantage is that these measures permit comparisons across illnesses, disease severity and with healthy population. However, generic measures are insensitive to the specific problems associated with each disease. Recently, a number of disease specific measures have been developed for epilepsy.

Studies examining the quality of life of patients with epilepsy generally reveal that they have impaired quality of life. Patients with epilepsy have relatively more compromised quality of life in the psychological, social and school domains compared to those with asthma, suggesting that these problems are specific to epilepsy and not simply the result of living with a chronic condition. It has been proved that patients with epilepsy experience significant restriction of activities leading to lower quality of life. Quality of life is an especially important health outcome to assess in patients with epilepsy. Despite its importance, there is relative lack of research on quality of life among patients with epilepsy.14-15

 This study was therefore conducted to determine the level of health-related QOL of patients of epilepsy in a tertiary care teaching hospital. The objective of this study was to evaluate patterns of the use of anti-epileptic drugs (AEDs) and their impact on the Quality of Life (QOL) in patients with epilepsy.

AIMS AND OBJECTIVE

• To determine the level of health related QOL of patients of epilepsy in a tertiary care teaching hospital.

Study design:  Questionnaire based cross-sectional, observational study in a tertiary care hospital.

Study duration: 12 months.

Study place: Dept. of Pharmacology in association with the Department of Neurology, S.P. Medical College and P.B.M Hospital, Bikaner.

Study population:  Epilepsy patients attending the Neurology OPD and Medicine IPD within the study period were recruited in the study after taking written informed consent.

Sample size: Patients on AED monotherapy and polytherapy. A random sample of 200 patients who met the inclusion criteria was recruited, which was deemed adequate to detect a clinically meaningful difference in QOL scores (10–11 points) across other variables.16

Sampling Method: Random sampling

Inclusion Criteria:

All patients with seizures of either sex , age >18 years , who were prescribed anti-epileptic drugs  were included in the study.

Willing to participate in the study.

Exclusion Criteria:

Patients who were unable to co-operate.

Patients with inability to give consent.

 Patients treated with traditional medicines alone.

Drug over-dose (deliberate or unintentional).

Cases of relapse due to non-compliance.

 Patients with status epilepticus and seizures associated with acute conditions like stroke or other illnesses like hypertension, diabetes, chronic pulmonary obstructive disease, etc.

Pregnancy 

Data Collection:

After reading the basic demographic profile, following information will be collect from them (patients or their guardians); duration of illness, number of previous hospitalizations, type of epilepsy, severity of illness, current anti-epileptic treatment, number of drugs, drugs names, dose at the time of the visit, duration of present treatment and the reason for initiating current treatment (first episode, drug substitution.

The QOLIE-31questionnaire was used for collecting data on health related QOL. It consists of seven subscales which are 1)seizure worry, 2)emotional well being, 3)medication effect, 4)overall QOL, 5)energy/fatigue , 6)cognitive function and 7)social function. A higher score indicates better QOL.

The mean age of patients was 33.67±11.33 Yrs. 117 patients were male .148 patients were married. 178 patients were literate. 58 patients were doing private jobs, 57 patients were house wives, 51 patients were doing government jobs and 37 patients were illiterate.

The social function score was 43.21±4.25. The medication effect score was 51.68±3.51. Cognitive function score was 58.14±4.48. Energy/fatigue score was 41.36±2.37. Emotional well being score was 38.26±3.11. The mean seizure worry score was 35.26± 3.89. Overall QOL score was 39.11± 2.56.

Epilepsy has a considerate impact in the quality of life with extensive and life long consequences. Improving the quality of life in a person with  a seizure disorder is an essential component of the management of such patients. Quality of life (QOL) is a broad , multidimensional concept that usually includes subjective evaluations of both positive and negative aspects of life. The concept of health related quality of life (HRQOL) and its determinants encompass the aspects that can be clearly shown to affect health - either physical or mental. On the individual level they include physical and mental health perceptions and their correlations with notable health risks and conditions, functional status, social support and socioeconomic status. Quality of life is worse in epileptic patients than in the general population, it is comparable or worse in patients with epilepsy than that in patients with other chronic conditions, and is similar to that of healthy persons when patients with epilepsy are well controlled.

In the present study the mean age of the patients was 33.67±11.33 years. Out of 200 patients 117 were male and 83 patients were females. Similar to our result, a study conducted by sonali A et al17 on patients of epilepsy (irrespective of the type of epilepsy) showed that out of 60 patients , 35 were men and 25 were women. The mean age of respondents was 30.17 years. The range of seizure frequency in the past 1 year was 1-4 with a mean of 2.367 and mean duration of epilepsy was 6.9 years.

Ahangar JA et al18 in his study found that the mean age of the study population was 36.6years and 64.9% of them were males and the rest 35.1% of them were females.

Anne M Nabukenya et al19 found that 50% of the patients were aged below 25 years; 51% had attained primary school education level at most and the majority of the patients (77%) were never married. The average age was 26.6 years(SD =11.1).

Norsa’adah B et al20 found that the mean age was 31.8 years old( standard deviation 11.0) and 56.6% were females.

In the present study most frequently prescribed drugs to the study population were phenytoin (33.0%), valproate (29.50%) and carbamazepine (18%). The other drugs prescribed to the study population include clobazam (4.0%), oxcarbazepine (4.0%), phenobarbitone (1.0%), topiramate (1.5%) and gabapentin (1.5%).

In the present study the mean social function score was 43.21±4.25. The mean medication effect was 51.68±3.51. The mean cognitive function score was 58.14±. The mean energy/fatigue score was 41.36±2.37. The mean emotional well being score was 38.26±3.11.The mean seizure worry score was 35.26±3.89 .The mean overall quality of life score was 39.11±2.56.

Similar to this result  a study conducted by Ahangar JA et al18 found that the mean overall QOLIE-31 score was 53 corresponding to “t” score of 44. Amongst the  QOLIE-31 subscales the highest mean score was the cognitive subscale (73.6) followed by medication effects (55.5) and social functions (52). The other mean subscale scores included overall quality of life (45), emotional well-being (44), energy fatigue (40) with seizure worry (30.7) being the lowest overall.

The mean total score of QOLIE-31 in this study was almost similar to studies conducted in other parts of India but higher scores were seen in studies conducted in Australia (52.9) and Africa (52.1)21-22. A study in Malaysia has reported a higher mean overall total score of  QOLIE-31 (68.9)23. Even though the majority of studies have used the QOLIE-31 questionnaire (different translations), different study methodologies with different inclusion and exclusion criteria would have accounted for the different scores. Higher scores as reported in this study reflects a better standard of medical care.

The pattern of scores of QOLIE-31 subscales of our study was partially similar to the studies conducted in Africa and Malaysia22,23. In our study the cognitive function subscale was the highest and seizure worry being the lowest. The difference in pattern may be due to the reason that different countries have dissimilarities of belief, culture and socioeconomic factors which in turn can affect quality of life measures, thus finding from other countries may not be relevant to the local situation.

It is evident from our study that there are many factors that influence QOL of people with epilepsy. Among them, type of drug therapy plays an important role. Adding clinical counseling and other interventions to address the physical, mental, psychological, social, and emotional aspects of health well-being is likely to achieve better health outcomes for epilepsy patients.

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