Assessment of quality of life in Indian adults with epilepsy and their caregivers

Abstract

Background Epilepsy is the most common neurological disorder which requires chronic treatment. This has prominent impact on the quality of life of the patient and their caregivers. This study was planned to assess and correlate the quality of life in epilepsy (QOLIE) in these two groups, in India.

Material and methods A total of 160 subjects with definite diagnosis of epilepsy according to ILAE and their caregivers were included in the study. The QOLIE 31 and SF 36 proforma were used as assessing instruments for subjects and caregivers respectively.

Results Factors such as early age of onset of epilepsy, lesser duration of epilepsy, increased interval between seizures in subjects on monotherapy, socioeconomic and educational status had better quality of life (QOL) in subjects than age, gender, marital and employment status. On the other hand for caregivers following factors-age, gender, relation with the subjects and socioeconomic status had influenced the QOL. The QOL of the caregivers was directly proportional proportional to the QOL of their respective subject.

Conclusion This study reaffirms the findings of the previous studies that key to improving quality of life of people with epilepsy, are good control of seizure and reducing side effects (by minimizing antiepileptic drugs) along with holistic care. Caregivers QOL is also proportionally affected by subjects QOL and it is seen to have adverse outcomes when the caregiver is female (mother or wife), elderly, of low socioeconomic status and when subject has poor seizure control.

Keywords

People with epilepsy (PWE) - Caregivers - Uncontrolled epilepsy - Anxiety - Depression

• References

• 1 Sander JW. The epidemiology of epilepsy revisited. Curr Opin Neurol 16 2003; 165-170
• 2 Juul-Jensen P, Foldsspang A. Natural history of epileptic seizures. Epilepsia 24 1983; 297-312
• 3 Cockerell OC, Shorvon SD. Epilepsy Current Concepts. 1996. Current Medical Literature Ltd; London: 1-13
• 4 Guberman AH, Bruni J. Essentials of Clinical Epilepsy. 2nd ed.. 1999. Butterworth Heinemann; Boston: 3-10
• 5 Perrine K, Hermann BP, Meador KJ. et al. The relationship of neuropsychological functioning to quality of life in epilepsy. Arch Neurol 52 1995; 997-1003
• 6 Hesdorffer DC, Logroscino G, Benn EK, Katri N, Cascino G, Hauser WA. Estimating risk for developing epilepsy: a population-based study in Rochester, Minnesota. Neurology 76 2011; 23-27
• 7 Banerjee PN, Hauser WA. Chapter 5: Incidence and Prevalence. Section I: Epidemiology, Pathology, and Genetics of Epilepsy. Available at: http://www.ilae.org/booksales/data/pages/Comprehensive%20Textbook%20chapter1.pdf
• 8 Johnson EK, Jones JE, Seidenberg M, Hermann BP. The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 45 2004; 544-550
• 9 Hamid H, Blackmon K, Cong X. et al. Mood, anxiety, and incomplete seizure control affect quality of life after epilepsy surgery. Neurology 82 2014; 887-894
• 10 Loring DW, Meador KJ, Lee GP. Determinants of quality of life in epilepsy. Epilepsy Behav 5 2004; 976-980
• 11 Thomas SV, Koshy S, Nair CRS, Sarma SP. Frequent seizure and polytherapy impair quality of life in patients with epilepsy. Neurol India 53 2005; 46-50
• 12 Kumar N, Gupta N, Kishore J. Kuppuswamy's socioeconomic scale: updating income ranges for the year 2012. Int J Pub Health 56 2012; 103-104
• 13 Kumari P, Ram D, Haque Nizamie S, Goyal N. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav 15 2009; 358-361
• 14 Sinha A, Sanyal D, Mallik S, Sengupta P, Dasgupta S. Factors associated with quality of life of patients with epilepsy attending a tertiary care hospital in Kolkata, India. Neurol Asia 16 2011; 33-37
• 15 Basy S, Sanyal D, Ghosal M, Roy B, Senapati AK, Das SK. Psychometric properties of Bengali version of QOLIE-10 in epileptic patients. Ann Indian Acad Neurol 11 2008; 28-32
• 16 Mehta S, Tyagi A, Tripathi R, Kumar M. Study of inter-relationship of depression, seizure frequency and quality of life of people with epilepsy in India. Ment Illn. 6. 2014 (Published on 04.03.2014). Available at: http://www.pagepress.org/journals/index.php/mi/article/view/5169
• 17 Rakesh PS, Ramesh R, Rachel P, Chanda R, Satish N, Mohan VR. Quality of life among people with epilepsy: a cross-sectional study from rural Southern India. Natl Med J India 25 2012; 261-264
• 18 Vanitha Rani N, Varughese NA, Shankar V, Kannan G, Thennarasu P. Assessment of quality of life of patients with epilepsy in the neurology OPD of a tertiary care University hospital. Int J Res Pharm Sci 4 2013; 141-145
• 19 Sirari S, Dhar D, Vishwakarma R, Tripathi S. Association between quality of life, depression and caregiver burden in epileptic patients in Haldwani, Uttarakhand, India. Int J Curr Sci 10 2014; E54-E56
• 20 Karim N, Ali A, Deuri SP. Care burden in epilepsy: a study from North East India. Int J Res Dev Health 2 2014; 84-89
• 21 Baker GA, Jacoby A, Buck D, Staglis C, Monnet D. Quality of life in people with epilepsy: a European study. Epilepsia 38 1997; 353-362
• 22 Ohaeri JU, Awadalla AW, Farah AA. Quality of life in people with epilepsy and their family caregivers: an Arab experience using the short version of WHO Quality of Life Instrument. Saudi Med J 30 2009; 1328-1335
• 23 Rajabi F, Dabiran S, Hatmi ZN, Zamani G. Quality of life of epileptic patients compared to general population of Tehran. Acta Medica Iran 47 2009; 75-78
• 24 Phabphal K, Geater A, Limapichart K, Satirapunya P. Setthawatcharawanich S. Quality of life in epileptic patients in Southern Thailand. J Med Assoc Thai 92 2009; 762-769
• 25 Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V. Quality of life of people with epilepsy in Iran, the Gulf, and Near East. Epilepsia 46 2005; 132-140
• 26 Mrabet H, Mrabet A, Zouari B, Ghachem R. Health-related quality of life of people with epilepsy compared with a general reference population: a Tunisian study. Epilepsia 45 2009; 838-843
• 27 Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B. Development and cross-cultural translations of a 31-Item quality of life in epilepsy inventory. Epilepsia 39 1998; 81-88
• 28 Guekht AB, Mitrokhina TV, Lebedeva AV. et al. Factors influencing on quality of life in people with epilepsy. Seizure 16 2007; 128-133
• 29 de Weerd A, de Haas S, Otte A. et al. Subjective sleep disturbance in patients with partial epilepsy: a questionnaire-based study on prevalence and impact on quality of life. Epilepsia 45 2004; 1397-1404
• 30 Hermann BP, Vickrey B, Hays RD. et al. A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Res 25 1996; 113-118
• 31 Sabaz M, Cairns R, Lawson JA, Bleasel AF, Bye AME. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 42 2001; 621-628
• 32 Miller V, Palermo TM, Grewe SD. Quality of life in pediatric epilepsy: demographic and disease-related predictors and comparison with healthy controls. Epilepsy Behav 4 2003; 36-42
• 33 Szaflarski M, Meckler JM, Privitera MD, Szaflarski JP. Quality of life in medication resistant epilepsy: the effects of patient's age, age at seizure onset, and disease duration. Epilepsy Behav 8 2006; 547-555
• 34 Leidy NK, Elixhauser A, Vickrtey B, Means E, William MK. Seizure frequency and the health related quality of life of adults with epilepsy. Neurology 53 1999; 162-166
• 35 Haut BV, Gagnon D, Soutre E. et al. Relationship between seizure frequency and costs and quality of life of out patients with partial epilepsy in France, Germany and the United Kingdom. Epilepsia 38 1997; 1221-1226
• 36 Choi-Kwon S, Chung C, Kim H. et al. Factors affecting the quality of life in patients with epilepsy in Seoul, South Korea. Acta Neurol Scand 108 2003; 428-434
• 37 Birbeck GL, Hays RD, Cui X, Vickrey BG. Seizure reduction and quality of life improvements in people with epilepsy. Epilepsia 43 2002; 535-538
• 38 Westphal-Guitti AC, Alonso NB, Migliorini RC. et al. Quality of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs 39 2007; 354-360
• 39 Lee MMK, Lee TMC, Ng PKK, Hung ATF, Au AML, Wong VCN. Psychosocial well-being of carers of people with epilepsy in Hong Kong. Epilepsy Behav 3 2002; 147-157
• 40 Austin JK, Dunn DW, Johnson CS, Perkins SM. Behavioral issues involving children and adolescents with epilepsy and the impact of their families: recent research data. Epilepsy Behav 5 2004; S33-S41
• 41 Chapieski L, Brewer V, Evankovich K, Culhane-Shelburne K, Zelman K, Alexander A. Adaptive functioning in children with seizures: Impact of maternal anxiety about epilepsy. Epilepsy Behav 7 2005; 246-252
• 42 Rodenburg R, Meijer AM, Dekovic M, Aldenkamp AP. Family predictors of psychopathology in children with epilepsy. Epilepsia 47 2006; 601-614
• 43 Williams J, Steel C, Sharp GB. et al. Parental anxiety and quality of life in children with epilepsy. Epilepsy Behav 4 2003; 483-486
• 44 Shore CP, Austin JK, Dunn DW. Maternal adaptation, to a child's epilepsy. Epilepsy Behav 5 2004; 557-568