Comparative retrospective analysis: exploring the quality of life of people with epilepsy in two cohorts

Authors

  • Hui-Yin Yow (1) Department of Pharmaceutical Life Sciences, Faculty of Pharmacy, Universiti Malaya, 50603 Kuala Lumpur, Malaysia (2) School of Pharmacy, Faculty of Health and Medical Sciences, Taylor's University, 47500 Subang Jaya, Malaysia
  • Kheng-Seang Lim Division of Neurology, Department of Medicine, Faculty of Medicine, Universiti Malaya, 50603 Kuala Lumpur, Malaysia
  • Melpreet Kuar Bhatt School of Pharmacy, Faculty of Health and Medical Sciences, Taylor's University, 47500 Subang Jaya, Malaysia
  • Si-Lei Fong Division of Neurology, Department of Medicine, Faculty of Medicine, Universiti Malaya, 50603 Kuala Lumpur, Malaysia
  • Christine Audrey Division of Neurology, Department of Medicine, Faculty of Medicine, Universiti Malaya, 50603 Kuala Lumpur, Malaysia

DOI:

https://doi.org/10.31117/neuroscirn.v7i1.310

Keywords:

Epilepsy, Quality of Life, Patients with Epilepsy, QOLIE-31

Abstract

People with epilepsy (PWE) are reported to have a lower quality of life (QOL). QOL among PWE were primarily observed through cross-sectional studies, and there is little information about the progression of QOL among PWE over the years. This study aimed to investigate the changes in QOL among PWE at a tertiary referral centre. A retrospective observational study was conducted among PWE from the Neurology clinic at the University Malaya Medical Centre. Data were extracted from the Quality of Life in Epilepsy Inventory (QOLIE-31) database for 2016, 2017, and 2020. A total of 88 subjects were included in Cohort 1 (2016 vs. 2017) and Cohort 2 (2017 vs. 2020), respectively. There was a significant improvement in mean scores of QOLIE-31 in Cohort 1 (57.7±12.2 vs. 63.2±14.2; p<0.001), in terms of seizure worry, emotional well-being, cognitive functioning, medication effects and social function (p<0.05, respectively). However, significant deterioration was observed in Cohort 2 (67.1±15.6 vs. 63.1±14.9; p=0.008), in terms of seizure worry and cognitive functioning (p<0.05, respectively). Based on the calculated Jacobson Reliable Change Index (RCI) for the QOLIE-31 score, 28.4% from Cohort 2 experienced deterioration of QOL as compared to those from Cohort 1 (8%) (p<0.001), which was most likely attributed to the COVID-19 pandemic. This study provides insights into the change of QOL among PWE in Malaysia over time, encompassing the COVID-19 pandemic period.

References

Allain, H., Schück, S., Nachit-Ouinekh, F., Plouin, P., Brunon, A. M., Boulliat, J., Mercier, F., Slama, A., Baulac, M. & El Hasnaoui, A. (2007). Improvement in quality of life after initiation of lamotrigine therapy in patients with epilepsy in a naturalistic treatment setting. Seizure, 16(2), 173–184. https://doi.org/10.1016/j.seizure.2006.11.009

Azuma, H. & Akechi, T. (2014). Effects of psychosocial functioning, depression, seizure frequency, and employment on quality of life in patients with epilepsy. Epilepsy & Behavior, 41, 18–20. https://doi.org/10.1016/j.yebeh.2014.09.025

Chen, H. F., Tsai, Y. F., Hsi, M. S. & Chen, J. C. (2016). Factors affecting quality of life in adults with epilepsy in Taiwan: A cross-sectional, correlational study. Epilepsy & Behavior, 58, 26–32. https://doi.org/10.1016/j.yebeh.2016.02.019

Cramer, J. A., Perrine, K., Devinsky, O., Bryant-Comstock, L., Meador, K. & Hermann, B. (1998). Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia, 39(1), 81–88. https://doi.org/10.1111/j.1528-1157.1998.tb01278.x

Fiest, K. M., Sauro, K. M., Wiebe, S., Patten, S. B., Kwon, C. S., Dykeman, J., Pringsheim, T., Lorenzetti, D. L. & Jetté, N. (2017). Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology, 88(3), 296–303. https://doi.org/10.1212/wnl.0000000000003509

Fong, C. Y., Chang, W. M., Kong, A. N., Rithauddin, A. M., Khoo, T. B. & Ong, L. C. (2018). Quality of life in Malaysian children with epilepsy. Epilepsy & Behavior, 80, 15–20. https://doi.org/10.1016/j.yebeh.2017.12.032

Fong, S.-L., Lim, K.-S., Tan, L., Zainuddin, N. H., Ho, J.-H., Chia, Z.-J., Choo, W.-Y., Puvanarajah, S. D., Chinnasami, S., Tee, S.-K., Raymond, A. A., Law, W.-C. & Tan, C.-T. (2021). Prevalence study of epilepsy in Malaysia. Epilepsy Research, 170, 106551. https://doi.org/https://doi.org/10.1016/j.eplepsyres.2021.106551

GBD 2017 DALYs & HALE Collaborators. (2018). Global, regional, and national disability-adjusted life-years (DALYs) for 359 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet, 392(10159), 1859–1922. https://doi.org/10.1016/s0140-6736(18)32335-3

Gebre, A. K., & Haylay, A. (2018). Sociodemographic, Clinical Variables, and Quality of Life in Patients with Epilepsy in Mekelle City, Northern Ethiopia. Behavioural Neurology, 2018, 7593573. https://doi.org/10.1155/2018/7593573

Hermann, B. P., Vickrey, B., Hays, R. D., Cramer, J., Devinsky, O., Meador, K., Perrine, K., Myers, L. W. & Ellison, G. W. (1996). A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Research, 25(2), 113–118. https://doi.org/https://doi.org/10.1016/0920-1211(96)00024-1

Honari, B., Homam, S. M., Nabipour, M., Mostafavian, Z., Farajpour, A., & Sahbaie, N. (2021). Epilepsy and quality of life in Iranian epileptic patients. Journal of Patient-Reported Outcomes, 5(1), 16. https://doi.org/10.1186/s41687-021-00292-3

Jacoby, A., Sudell, M., Tudur Smith, C., Crossley, J., Marson, A. G., Baker, G. A. & SANAD Study Group. (2015). Quality‐of‐life outcomes of initiating treatment with standard and newer antiepileptic drugs in adults with new‐onset epilepsy: findings from the SANAD trial. Epilepsia, 56(3), 460–472. https://doi.org/10.1111/epi.12913

Josephson, C. B. & Jetté, N. (2017). Psychiatric comorbidities in epilepsy. International Review of Psychiatry, 29(5), 409–424. https://doi.org/10.1080/09540261.2017.1302412

Koh, M. Y., Lim, K. S., Fong, S. L., Khor, S. B. & Tan, C. T. (2021a). Impact of COVID-19 on quality of life in people with epilepsy, and a multinational comparison of clinical and psychological impacts. Epilepsy & Behavior, 117, 107849. https://doi.org/10.1016/j.yebeh.2021.107849

Koh, M. Y., Lim, K. S., Fong, S. L., Khor, S. B. & Tan, C. T. (2021b). Impact of COVID-19 pandemic on people with epilepsy: An interventional study using early physical consultation. Epilepsy & Behavior, 122, 108215. https://doi.org/10.1016/j.yebeh.2021.108215

Liu, X. Q., Ren, X. N., Zhou, G. L. & Chen, P. Y. (2003). Reliability and validity of quality of life in epilepsy inventory-31 (QOLIE-31). Chinese Journal of Neuromedicine, 2, 106–109.

Lua, P. L., Haron, H., Cosmas, G. & Nawi, N. H. M. (2007). The Impact of Demographic Characteristics on Health-related Quality of Life Profile of Malaysian Epilepsy Population. Applied Research in Quality of Life, 2(4), 247–271. https://doi.org/10.1007/s11482-008-9041-y

Mac, T. L., Tran, D.-S., Quet, F., Odermatt, P., Preux, P.-M. & Tan, C. T. (2007). Epidemiology, aetiology, and clinical management of epilepsy in Asia: a systematic review. The Lancet Neurology, 6(6), 533–543. https://doi.org/https://doi.org/10.1016/S1474-4422(07)70127-8

Malik, N. I., Fatima, R., Ullah, I., Atta, M., Awan, A., Nashwan, A. J. & Ahmed, S. (2022). Perceived stigma, discrimination and psychological problems among patients with epilepsy. Frontiers in Psychiatry, 13, 1000870. https://doi.org/10.3389/fpsyt.2022.1000870

Modi, A. C., Ingerski, L. M., Rausch, J. R. & Glauser, T. A. (2011). Treatment factors affecting longitudinal quality of life in new onset pediatric epilepsy. Journal of Pediatric Psychology, 36(4), 466–475. https://doi.org/10.1093%2Fjpepsy%2Fjsq114

Mohamed, S., Gill, J. S. & Tan, C. T. (2014). Quality of life of patients with epilepsy in Malaysia. Asia-Pacific Psychiatry, 6(1), 105–109. https://doi.org/10.1111/j.1758-5872.2012.00192.x

Noble, A. J., Reilly, J., Temple, J. & Fisher, P. L. (2018). Cognitive-behavioural therapy does not meaningfully reduce depression in most people with epilepsy: a systematic review of clinically reliable improvement. Journal of Neurology, Neurosurgery & Psychiatry, 89(11), 1129–1137. https://doi.org/10.1136/jnnp-2018-317997

Norsa'adah, B., Zainab, J. & Knight, A. (2013). The quality of life of people with epilepsy at a tertiary referral centre in Malaysia. Health and Quality Life Outcomes, 11, 143. https://doi.org/10.1186/1477-7525-11-143

Saadi, A., Patenaude, B. & Mateen, F. J. (2016). Quality of life in epilepsy-31 inventory (QOLIE-31) scores: A global comparison. Epilepsy & Behavior, 65, 13–17. https://doi.org/10.1016/j.yebeh.2016.09.032

Silva, B., Canas-Simião, H., Cordeiro, S., Velosa, A., Oliveira-Maia, A. J. & Barahona-Corrêa, J. B. (2019). Determinants of quality of life in patients with drug-resistant focal epilepsy. Epilepsy & Behavior, 100(Pt A), 106525. https://doi.org/10.1016/j.yebeh.2019.106525

Tombini, M., Assenza, G., Quintiliani, L., Ricci, L., Lanzone, J. & Di Lazzaro, V. (2021). Epilepsy and quality of life: what does really matter? Neurological Sciences, 42(9), 3757–3765. https://doi.org/10.1007/s10072-020-04990-6

Tsigebrhan, R., Derese, A., Kariuki, S. M., Fekadu, A., Medhin, G., Newton, C. R., Prince, M. J. & Hanlon, C. (2023). Co-morbid mental health conditions in people with epilepsy and association with quality of life in low- and middle-income countries: a systematic review and meta-analysis. Health and Quality Life Outcomes, 21(1), 5. https://doi.org/10.1186/s12955-022-02086-7

van Ool, J. S., Snoeijen-Schouwenaars, F. M., Schelhaas, H. J., Tan, I. Y., Aldenkamp, A. P. & Hendriksen, J. G. M. (2016). A systematic review of neuropsychiatric comorbidities in patients with both epilepsy and intellectual disability. Epilepsy & Behavior, 60, 130–137. https://doi.org/https://doi.org/10.1016/j.yebeh.2016.04.018

Vickrey, B. G., Hays, R. D., Rausch, R., Sutherling, W. W., Engel Jr, J. & Brook, R. H. (1994). Quality of Life of Epilepsy Surgery Patients as Compared with Outpatients with Hypertension, Diabetes, Heart Disease, and/or Depressive Symptoms. Epilepsia, 35(3), 597–607. https://doi.org/https://doi.org/10.1111/j.1528-1157.1994.tb02480.x

Vickrey, B. G., Perrine, K. R., Hays, R. D., Hermann, B. P., Cramer, J. A., Meador, K. J. & Devinsky, O. (1993). Quality of Life in Epilepsy (QOLIE)-31 scoring manual (version 1.0). RAND.

Whatley, A. D., DiIorio, C. K. & Yeager, K. (2010). Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Education Research, 25(4), 575–584. https://doi.org/10.1093/her/cyq001

Wiebe, S., Matijevic, S., Eliasziw, M. & Derry, P. A. (2002). Clinically important change in quality of life in epilepsy. Journal of Neurology, Neurosurgery & Psychiatry, 73(2), 116–120. https://doi.org/10.1136/jnnp.73.2.116

Xiao, Z., Ding, D., Li, S. & Hong, Z. (2020). Management of people with epilepsy during the COVID-19 pandemic: a national survey among epileptologists in China. Acta Epileptologica, 2(1), 19. https://doi.org/10.1186/s42494-020-00030-0

Downloads

Additional Files

Published

2024-03-25

How to Cite

Yow, H.-Y., Lim, K.-S., Bhatt, M. K., Fong, S.-L. and Audrey, C. (2024) “Comparative retrospective analysis: exploring the quality of life of people with epilepsy in two cohorts ”, Neuroscience Research Notes, 7(1), pp. 310.1–310.10. doi: 10.31117/neuroscirn.v7i1.310.