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ORIGINAL ARTICLE
Year : 2014  |  Volume : 4  |  Issue : 1  |  Page : 53-57

Quality of life in epileptic patients in doctor's perspective


1 Department of Clinical Research, Institute of Clinical Research, Hyderabad, Andhra Pradesh, India
2 Department of Pharmacology, Rajiv Gandhi Institute of Medical Sciences, Ongole, Andhra Pradesh, India

Date of Submission22-Jul-2013
Date of Acceptance03-Sep-2013
Date of Web Publication8-Jan-2014

Correspondence Address:
Hima Bindu Gujjarlamudi
Department of Pharmacology, Rajiv Gandhi Institute of Medical Sciences (RIMS), Ongole - 523 001, Andhra Pradesh
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2231-0738.124614

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   Abstract 

Objectives: To identify the quality of life (QOL) in epileptics, the risk factors and many unseen reasons for their wretched QOL, and to suggest the steps and methods to overcome the barriers in leading a quality life. Materials and Methods: In this study questionnaire was designed for doctors instead of patients for evaluating the QOL in epileptics. A structured questionnaire was used to collect information on various factors simultaneously like demographic profile, seizure characteristics, knowledge regarding cause of epilepsy, attitude towards medical treatment, etc. , Results: Overall the total score of physical well-being (71), mental/emotional state (75), handle stress (76), medication effect (70), life enjoyment (70), and overall QOL (70) are worse in epileptics. Conclusion: Almost all different factors like seizure severity, frequency, depression, anxiety, underlying causes, socioeconomic status, type of therapy, etc., had strong interlinked influence on QOL especially stigma and attitude of society towards epileptics. Hence, to improve the QOL in epileptics it is essential to give equal importance to all factors simultaneously instead of giving separately.

Keywords: Epilepsy, quality of life, risk factors


How to cite this article:
Durugkar S, Gujjarlamudi HB, Sewliker N. Quality of life in epileptic patients in doctor's perspective. Int J Nutr Pharmacol Neurol Dis 2014;4:53-7

How to cite this URL:
Durugkar S, Gujjarlamudi HB, Sewliker N. Quality of life in epileptic patients in doctor's perspective. Int J Nutr Pharmacol Neurol Dis [serial online] 2014 [cited 2019 Jun 15];4:53-7. Available from: http://www.ijnpnd.com/text.asp?2014/4/1/53/124614


   Introduction Top


Epilepsy is a chronic neurological condition characterized by recurrent seizures. A seizure is an abnormal electrical activity in the brain causing an involuntary change in body movement or function, sensation, awareness, or behavior. Epilepsy can be caused by many different conditions that affect a person's brain which include stroke, head trauma, complications during childbirth, infections (such as meningitis, encephalitis, cysticercosis, or brain abscess), and certain genetic disorders. Often, no definite cause can be found. Annual incidence rate of epilepsy is 40-70 per 1, 00,000 in developed countries and 100-190 per 1, 00,000 in developing countries and while underdeveloped countries are at more risk [1] Nearly 30% of epileptics do not have control even though good medicines are available [2] . Each year in India the incidence rate of epilepsy is around 49.3 per 1,00,000 individuals reported by a solitary study which would be nearer to half a million [3]

Delayed recognition of seizures and inadequate treatment, which may result from lack of specialty care, greatly increases a person's risk for subsequent seizures, brain damage, disability, and death from injuries incurred during a seizure. QOL of epileptics has been adversely affected due to many factors related to the life either directly or indirectly. Lack of understanding about epilepsy is a leading cause of discrimination in the workplace and in schools. Stigmatization, attitude of society, co-morbidities, socioeconomic status, seizure severity, and frequency are the most common factors that come across in the life of epileptic as a big hurdle to lead a quality life. To understand the QOL of epileptics it becomes extremely important in reaching to the gross root level of understanding it and improving care for individuals affected with epilepsy, that is, it is crucial to identify factors from all aspects of life related to epilepsy. [4],[5]

The aim of the study is to identify the QOL in epileptics, the risk factors, and to suggest the steps and methods to overcome the barriers in leading a quality life.


   Materials and Methods Top


The study was done in Hyderabad, Andhra Pradesh in India. Thirty-one general physicians and neurologists were requested to fill the questionnaire. Doctors who diagnose primary generalized (myoclonic, absence, tonic-clonic seizures) or partial (complex partial, simple partial, secondarily generalized tonic-clonic seizure) epilepsy were included. Doctors were excluded who have not practiced with seizure patients or who have shifted to teaching field.

QOL questionnaire

To evaluate the QOL of seizure patients, a well-administered and well-reported questionnaire was prepared under the advice of experts in this field. QOLIE-31 questionnaire was modified according to requirements. The questionnaire contains seven sections for the convenience and understanding of doctors.

  • Section 1 - Physical state includes 7 questions
  • Section 2 - Mental/emotional state includes 10 questions
  • Section 3 - Stress evaluation includes 10 questions
  • Section 4 - Medication effect includes 10 questions
  • Section 5 - Life enjoyment includes 12 questions
  • Section 6 - Special group includes 5 questions
  • Section 7 - Overall impression on QOL includes 6 questions.


For first six sections, each question has five options never, rarely, occasionally, regularly, constantly, with assigned score 1-5, respectively. For section 7, each question has three options better, same, worse with assigned score 1-3, respectively to reach to the core point very precisely.

Totally the questionnaire contains 60 questions and all questions were designed in such a way that even small issues related to QOL of seizure patients of all categories can also be significantly reported under doctor's perspective.

Analysis

The statistical analysis was done by using simple bar diagram to focus on each point very significantly. A frequency chart was prepared and converted into pictorial data, that is, in bar diagrams.


   Results Top


Each question in the questionnaire of this study has significant role in the QOL of epileptics. In case of physical state, presence of pain is regularly seen followed by headache and fatigue. Later accidents have more influence on QOL and less preference is with menstrual discomfort [Figure 1].
Figure 1: Strength within each question in physical state

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In epileptics mental/emotional state is disturbed. There is depression, with occasional anxiety and fear [Figure 2]. More worried with negative feelings and restlessness is seen.
Figure 2: Strength within each question in mental/emotional state

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In case of stress evaluation, stress due to relationship in the society, family, due to health, and work has maximum impact on QOL [Figure 3]. Coming to medication effect, early diagnosis, side effect, medication during emergency and recovery time, seizure frequency, and severity have maximum impact on QOL. Less influence is seen with stage of treatment and ketogenic diets [Figure 4]. Turning to life enjoyment, relaxation or well-being, positive feelings, interest in health, feeling of being open, confidence level, compassion level, recreation level, joy/happiness, sex life, time contributed to interested things, and personnel skills have significant influence of QOL [Figure 5].
Figure 3: Strength within each question in stress evaluation

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Figure 4: Strength within each question in medication effect

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Figure 5: Strength within each question life enjoyment

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When coming to the occurrence of seizures specifically in any particular group of population, the findings revealed that pregnant and lactating women are at high risk followed by children and geriatric group [Figure 6].
Figure 6: Strength within each question in special group

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The last section deals with the overall QOL stressing on all above parameters [Figure 7]. Each question has three options and the total score lies between 31 and 93. The findings on analysis of overall impression [Table 1] on QOL are worse.
Figure 7: Strength within each question in overall impression

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Table 1: Analysis of overall impression on quality
of life


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   Discussion Top


A liberal approach of formulation and assessment of QOL in patients suffering with seizures is much strongly urged. QOL is described as an individual's overall gratification with life and their normal sense of well-being and accommodates frequently three to six life domains or dimensions. Baker's [6] and Spilker's [7] comprehensive examples also specify three liberal QOL domains (physical, social, and psychological) and within them many specific interconnected aspects and dimensions are noticed. There is discrepancy regarding what includes a good life against what determines it.

Measures evaluating physical, social, and psychological status are believed as determinants of QOL but not as a QOL itself. These determinants are frequently marked as health status measures. [8] But in the present study instead of individual's perception, doctor's perception is given importance for evaluating the QOL of epileptics patients because it involved serious ethical issues, that is, the patient in the hospital or clinics when they approached after and during an episode of seizure attack, they are not in a state of answering any question and even though when they become conscious they are still in critical condition to answer any question.

Epileptics are normally considered to be more socially dysfunctional than with individuals without epilepsy. Physical co-morbidity is identified as extra burden linked with chronic epilepsy. Supporting the results in this study about mortality rates in seizure patients are mostly associated with accidents when they are alone using electric equipments, driving, swimming, bathing, etc., Several studies have identified several factors in connection with clinical cause and wretched psychological functioning, but results are not coherent. Impact of depression and anxiety on the QOL of epileptics is crucial. In our findings depression and anxiety also gained more importance like other factors related to QOL. Recently, Gilliam revealed a full bodied 'dose-related' or linear relation among inter-ictal depressive indications and QOL such as more the frequency and severity of the indications or symptoms of depression, poor the individual's QOL. [9] From findings in this study it is also revealed that overall psychosocial factors that include many interlinked variables like socioeconomic state, employment, relations, sex life, personal skills, freedom, attitude of society, etc., also have much importance in the QOL. At this point it becomes very clear that all variables show a great relation among each other for rendering either positive or negative QOL on epileptics. [10]

In this study it also revealed that frequent seizures and their severity rendered significant bad impact on QOL of epileptics along with the polytherapy as an additional factor still worsening their QOL. This is because of the treatment gap which is again due to the cost of antiepileptic drugs (AEDs). [11] Because of more side effects, more drug interactions, and less safety profile of polytherapy, it clearly indicates that QOL is adversely affected by polytherapy. Moreover studies from clinical trials support that monotherapy has same effect and better tolerability by patients compared to polytherapy. Also polytherapy slightly increases the control over the seizures and significantly increases drug toxicity, drug-drug interaction, co-morbid depression, cost, and noncompliance; thus decreasing the QOL. [12]

To minimize misconception, women with epilepsy and their carers must be given exact counseling and information regarding contraception, pregnancy, caring for children, breast feeding, and menopause. In women with childbearing age, the danger of the AEDs rendering harm to child in the womb must be discussed and also the possibility of status epilepticus must also be discussed with all women who decide to stop AED therapy.

Delivery must take place in an obstetric unit with experts in that field and with facilities for mother and child revitalization and treating maternal seizures. Genetic counseling should be conducted if either of the partner or their familial history have epilepsy. [13]

After women, importance is given to learning disability group because of their critical nature. Learning disabilities and epilepsy usually coexists and more usually develop in childhood. It is figured that epilepsy has a preponderance of 15% in population with mild learning disabilities and 30% in those people with severe learning disabilities and subsequent condition are at low risk level of developing epilepsy and those with additional disabilities like cerebral palsy or postnatal brain injury are at highest risk level of epilepsy, thus contributing to poor QOL of epileptics. [13] They must receive the additional support and care for their epilepsy than general population. It becomes very important for maintaining video recordings and dairies as an eye witness to explain their behavior and symptoms. They must be given adequate care and attention during investigation as they cannot tolerate it.

Careful attention must be paid for these group while prescribing the AEDs as they may adversely affect their cognitive and behavior pattern. Healthcare experts must be aware of risks of mortality for these people and must discuss with their near ones or carers.

Children are very susceptible to seizures along with pregnant and lactating women and people with learning disabilities. At this juncture, it becomes very crucial for the carers of children, that is, parents along with the physicians to play a big role for control, management, and betterment of their child's seizure and improving QOL. It also revealed that a more patient-centered holistic theory is most beneficial proved by an inter-disciplinary team that is capable to reply comprehensively to not only the medical approaches, but also to daily approaches related with child's epilepsy. [14]

There is a significant data obtained from the results to stress on the importance of seizures on the QOL of older people. Maximum number of seizures in this population include either focal or focal in origin with secondary generalization. Epilepsy in this population renders many important psychosocial problems like increased dependency, constant feeling of helplessness, fear of loss of balance, stigmatization, loss of freedom including transportation issues, etc., all leading to poor QOL. [14] Moreover, low physical strength also plays a role in poor QOL added with seizure episodes.

Carers or who are near to the patients have a very constant role for the improvement in the health of patients and ultimately their QOL. For that it becomes very essential for carers to follow some standards and rules in order to overcome hurdles which come across while taking care of epileptics. From a study it revealed that 80% of carers employed Individual Epilepsy Guidelines (IEG) all the time when an epileptic individual had an episode of seizure. Moreover, carers found IEG as very easy to understand and implement. It is also suggested that IEG acts as an educational source for carers and good means of communication for exchanging information with health experts. All these guidelines prevent the carers from getting worsening their QOL in improving the QOL of epileptics. [15] Simultaneous information and counseling for both epileptics and their careers also rendered more significant influence in bettering the QOL instead of giving guidelines for either of them separately.

The exact information required is a complex and frequently individual matter. Nevertheless the information regarding to gain control in all aspects would lead to improved QOL for people suffering with epilepsy. It is also advised that support and information which is oriented to identify needs is regarded as more efficient with small group discussions or personal counseling. Also style, timing, and format of counseling play a good role for better understanding and improving the QOL. Moreover, the outcomes of information and counseling may include improved QOL, capability to formulate good coping criteria, an increased sensing of control, minimizing the feeling of fear, uncertainty, etc., Maintaining video recordings as a proof and good accommodation and infrastructure in premises of epileptic patients can significantly improve the QOL. Also educating the society has great positive impact on QOL as the way the society looks and thinks of epileptics and behaves with them, will get changed drastically.


   Conclusion Top


Seizures have worse impact of QOL of epileptics in each and every aspect of life and it does not show any specific importance to any particular factor. All factors are interlinked to one another. However, one cannot minimize one factor without minimizing other factors because they are strongly interlinked to one another. Hence, a holistic importance and stress should be given on all factors that are responsible for poor QOL of epileptics.

 
   References Top

1.Sander JW. The epidemiology of epilepsy revisited. Curr Opin Neurol 2003;16:165-70.  Back to cited text no. 1
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2.Cascino GD. Epilepsy: Contemporary perspectives on evaluation and treatment. Mayo Clin Proc 1994;69:1199-211.  Back to cited text no. 2
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3.Sridharan R. Epidemiology of epilepsy. Curr Sci 2002;82:664-70.  Back to cited text no. 3
    
4.Tlusta E, Zarubova J, Simko J, Hojdikova H, Salek S, Vlcek. Clinical and demographic characteristics predicting QOL in patients with epilepsy in the Czech Republic: How this can influence practice. Seizure 2009;18:85-9.  Back to cited text no. 4
    
5.Bungay K, Ware J. Clinical usefulness of health related quality of life data. In: Current Concepts Measuring and Monitoring, Health Related Quality of Life. Michigan: The Upjohn Company; 1993. p. 27.  Back to cited text no. 5
    
6.Baker GA, Jacoby A, Smith D, et al. Quality of life in epilepsy: The Liverpool initiative. In: Trimble MR, Dodson WE, editors. Epilepsy and Quality of Life. New York: Raven Press; 1994. p. 135-50  Back to cited text no. 6
    
7.Spilker B. Introduction. In: Spilker B, editor Quality of Life Assessment in Clinical Trials. New York: Raven Press; 1990. p. 3-9  Back to cited text no. 7
    
8.Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia 2001;42:1160-8.  Back to cited text no. 8
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9.Gilliam F. Optimizing health outcomes in active epilepsy. Neurology 2002;58:S9-20.  Back to cited text no. 9
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10.Falip M, Artazcoz L, de la Peña P, Pérez-Sempere A, Codina M. Epilepsy Study Group of the Spanish Society of Neurology. Clinical characteristics associated with psychosocial functioning among patients with uncomplicated epilepsy in Spain. Seizure 2007;16:195-203.  Back to cited text no. 10
    
11.Koshy S, Thomas SV, Nair CR, Sarma PS. Frequent seizures and polytherapy impair quality of life in persons with epilepsy. Neurol Asia 2004;9:142.  Back to cited text no. 11
    
12.St. Louis EK, Rosenfeld WE, Bramley T. Antiepileptic drug monotherapy: The initial approach in epilepsy management. Curr Neuropharmacol 2009; 7:77-82.  Back to cited text no. 12
    
13.Stokes T, Shaw EJ, Juarez-Garcia A, Camosso-Stefinovic J, Baker R. Clinical guidelines and evidence review for the epilepsies: Diagnosis and management in adults and children in primary and secondary care. London: Royal College of General Practitioners; 2004.  Back to cited text no. 13
    
14.McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: The impact of epilepsy in late adulthood. Seizure 2008;17:281-7.  Back to cited text no. 14
[PUBMED]    
15.Cole C, Pointu A, Mahadeshwar S, Dudley A. Community Survey of Carer's: Individual epilepsy guidelines (IEG) for rescue medication. Seizure: 2009;18;220-4.  Back to cited text no. 15
    


    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7]
 
 
    Tables

  [Table 1]



 

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