epilepsiaEpilepsy and paroxysmal conditionsЭпилепсия и пароксизмальные состояния2077-83332311-4088IRBIS LLC10.17749/2077-8333/epi.par.con.2020.044epilepsia-623Research ArticleORIGINAL ARTICLESОРИГИНАЛЬНЫЕ СТАТЬИQuality of life and its determinants in patients with drug resistant focal epilepsyКачество жизни и его детерминанты у пациентов с фармакорезистентной фокальной эпилепсиейhttps://orcid.org/0000-0002-4381-347XМалышевС. М.MalyshevS. М.

Малышев Станислав Михайлович – аспирант кафедры неврологии и психиатрии Института медицинского образования

ResearcherID: N-7251-2016; РИНЦ SPIN-код: 6306-0424

ул. Маяковского, д. 12, Санкт-Петербург 191014

Stanislav M. Malyshev – Postgraduate Student, Department of Neurology and Psychiatry, Institute of Medical Education

ResearcherID: N-7251-2016; RSCI SPIN-code: 6306-0424

12 Mayakovskiy Str., Saint Petersburg 191014

malyshev_sm@almazovcentre.ruhttps://orcid.org/0000-0002-4441-1165АлексееваТ. М.AlekseevaТ. М.

Алексеева Татьяна Михайловна – д.м.н., заведующая кафедрой неврологии и психиатрии Института медицинского образования

ResearcherID: S-8806-2017; РИНЦ SPIN-код: 3219-2846

ул. Маяковского, д. 12, Санкт-Петербург 191014

Tatiana M. Alekseeva – Dr. Med. Sc., Head of the Department of Neurology and Psychiatry, Institute of Medical Education

ResearcherID: S-8806-2017; RSCI SPIN-code: 3219-2846

12 Mayakovskiy Str., Saint Petersburg 191014

Федеральное государственное бюджетное учреждение «Национальный медицинский исследовательский центр им. В.А. Алмазова» Министерства здравоохранения Российской ФедерацииРоссияAlmazov National Medical Research CentreRussian Federation202024022021124216225Copyright © Malyshev S.М., Alekseeva Т.М., 20212021Малышев С.М., Алексеева Т.М.Malyshev S.М., Alekseeva Т.М.Данная работа распространяется под лицензией Creative Commons Attribution 4.0.This work is licensed under a Creative Commons Attribution 4.0 License.https://www.epilepsia.su/jour/article/view/623

Objective: to determine the factors influencing quality of life (QoL) in patients with drug-resistant focal epilepsy (DRFE). Material and methods. 111 adult patients with DRFE were included in the study. Quality of life was measured using the Quality Of Life In Patients with Epilepsy – 31 questionnaire (QOLIE-31). The severity of the disease (frequency and subjective assessment of the severity of seizures), the effect of pharmacotherapy (drug load and composition of the treatment regimen), the social status of patients, comorbid conditions (anxiety and depressive disorders, pathological fatigue) were assessed. Results. In the studied sample, a pronounced decrease in QoL was shown, the median of the final QOLIE-31 score was 65.4 points (interquartile range 53.0–72.6 points). A statistically significant decrease in QoL was found in subgroups of patients with seizures during the previous three months; taking carbamazepine or benzobarbital; with anxiety and depressive disorders; with pathological fatigue; and in unemployed patients. A multiple linear regression model (R2=0.66) was developed, which included the following determinants: Fatigue Severity Scale, Liverpool Seizure Severity Scale, and the risk of depression according to the NDDI-E questionnaire. Conclusion. In patients with drug-resistant focal epilepsy, there is a pronounced decrease in the quality of life due to combination of factors associated with the characteristics of the disease, treatment, comorbidities, and social status. The key QoL determinants in patients with DRFE are pathological fatigue, anxiety and depression, and subjective severity of epileptic seizures; employment is a positive factor. The role of epileptic seizures frequency in QoL formation in these patients requires further research.

Цель: определить факторы, влияющие на уровень качества жизни (КЖ) у пациентов с фармакорезистентной фокальной эпилепсией (ФРФЭ). Материал и методы. В исследование вошли 111 взрослых пациентов с ФРФЭ. КЖ измеряли с помощью опросника Quality Of Life In Patients with Epilepsy – 31 (QOLIE-31). Оценивали тяжесть течения заболевания (частоту и субъективную оценку тяжести приступов), влияние фармакотерапии (лекарственную нагрузку и состав схемы лечения), социальный статус пациентов, коморбидные состояния (тревожно-депрессивные расстройства, патологическую усталость). Результаты. В исследованной выборке выявлено выраженное снижение КЖ, медиана итоговой оценки по QOLIE-31 – 65,4 балла (межквартильный размах 53,0–72,6 балла). Статистически значимое снижение КЖ выявлено в подгруппах пациентов с приступами в течение предшествовавших 3 мес; принимавших карбамазепин или бензобарбитал; с тревожными и депрессивными расстройствами; с патологической усталостью; а также у безработных пациентов. Построена множественная линейная регрессионная модель (R2=0,66), в которую вошли следующие детерминанты: Шкала оценки усталости, Ливерпульская шкала тяжести приступов, риск депрессии по опроснику NDDI-E. Заключение. У пациентов с ФРФЭ отмечено выраженное снижение КЖ, обусловленное совокупностью факторов, связанных с особенностями заболевания, лечения, коморбидных расстройств, а также социального статуса. Ключевыми детерминантами КЖ у данных больных являются патологическая усталость, тревожно-депрессивные расстройства и субъективная оценка тяжести эпилептических приступов; положительным фактором служит трудовая занятость. Роль частоты эпилептических приступов в формировании КЖ у пациентов с ФРФЭ требует дальнейшего уточнения.

фармакорезистентная эпилепсиякачество жизнитревожно-депрессивные расстройстваусталостьdrug-resistant epilepsyquality of lifedepressionmood disordersfatigueReferencesМихайлов В.А. Актуальные вопросы эпилептологии – стигматизация, качество жизни и реабилитация больных. Эпилепсия и пароксизмальные состояния. 2010; 2 (3): 39–44.Mikhailov V.A. Topical issues of epileptology – stigmatization, quality of life and rehabilitation of patients. Epilepsy and Paroxysmal Conditions. 2010; 2 (3): 39–44 (in Russ.).Киссин М.Я., Незнанов Н.Г. Эпидемиология психических расстройств у больных эпилепсией в Санкт-Петербурге. Социальная и клиническая психиатрия. 2006; 16 (4): 5–9.Kissin M.Ya., Neznanov N.G. Epidemiology of mental disorders in epileptic patients in St. Petersburg. Social'naya i klinicheskaya psikhiatriya / Social and Clinical Psychiatry. 2006; 16 (4): 5–9 (in Russ.).Гузева О.В., Гузева В.И., Гузева В.В. и др. Качество жизни детей с эпилепсией (психоневрологические и социальные аспекты). Ученые записки СПбГМУ им. акад. И. П. Павлова. 2016; 23 (4): 12–7. https://doi.org/10.24884/1607-4181-2016-23-4-12-17.Guzeva O.V., Guzeva V.I. Guzeva V.V., et al. Quality of life of children with epilepsy (neuropsychiatric and social aspects). The Scientific Notes of the Pavlov University. 2016; 23 (4): 12–7. https://doi.org/10.24884/1607-4181-2016-23-4-12-17 (in Russ.).Steiger B.K., Jokeit H. Why epilepsy challenges social life. Seizure. 2017; 44: 194–8. https://doi.org/10.1016/j.seizure.2016.09.008.Steiger B.K., Jokeit H. Why epilepsy challenges social life. Seizure. 2017; 44: 194–8. https://doi.org/10.1016/j.seizure.2016.09.008.Ebrahim S. Clinical and public health perspectives and applications of health-related quality of life measurement. Soc Sci Med. 1995; 41 (10): 1383–94. https://doi.org/10.1016/0277-9536(95)00116-o.Ebrahim S. Clinical and public health perspectives and applications of health-related quality of life measurement. Soc Sci Med. 1995; 41 (10): 1383–94. https://doi.org/10.1016/0277-9536(95)00116-o.Шляхто Е.В., Яковенко И.В. Медицина, ориентированная на исход заболевания. Трансляционная медицина. 2017; 4 (1): 6–10.Shlyakhto E.V., Yakovenko I.V. Outcome-based healthcare. Translational Medicine. 2017; 4 (1): 6–10 (in Russ.).Melikyan E., Guekht A., Milchakova L., et al. Health-related quality of life in Russian adults with epilepsy: the effect of socio-demographic and clinical factors. Epilepsy Behav. 2012; 25 (4): 670–5. http://dx.doi.org/10.1016/j.yebeh.2012.09.042.Melikyan E., Guekht A., Milchakova L., et al. Health-related quality of life in Russian adults with epilepsy: the effect of socio-demographic and clinical factors. Epilepsy Behav. 2012; 25 (4): 670–5. http://dx.doi.org/10.1016/j.yebeh.2012.09.042.Saadi A., Patenaude B., Mateen F.J. Quality of life in epilepsy – 31 inventory (QOLIE-31) scores: a global comparison. Epilepsy Behav. 2016; 65: 13–7. https://doi.org/10.1016/j.yebeh.2016.09.032.Saadi A., Patenaude B., Mateen F.J. Quality of life in epilepsy – 31 inventory (QOLIE-31) scores: a global comparison. Epilepsy Behav. 2016; 65: 13–7. https://doi.org/10.1016/j.yebeh.2016.09.032.Фирсов К.В., Амирханян М.Г., Котов А.С. Пациенты с резистентной фокальной эпилепсией: что влияет на качество жизни? Эпилепсия и пароксизмальные состояния. 2019; 11 (3): 233–43. http://dx.doi.org/10.17749/2077-8333.2019.11.3.233-243.Firsov K.V., Amirhanyan M.G., Kotov A.S. Patients with resistant focal epilepsy: what affects the quality of life? Epilepsy and Paroxysmal Conditions. 2019; 11 (3): 233–43 (in Russ.). http://dx.doi.org/10.17749/2077-8333.2019.11.3.233-243.Blond B.N., Detyniecki K., Hirsch L.J. Assessment of treatment side effects and quality of life in people with epilepsy. Neurol Clin. 2016; 34 (2): 395–410. https://doi.org/10.1016/j.ncl.2015.11.002.Blond B.N., Detyniecki K., Hirsch L.J. Assessment of treatment side effects and quality of life in people with epilepsy. Neurol Clin. 2016; 34 (2): 395–410. https://doi.org/10.1016/j.ncl.2015.11.002.Baranowski C.J. The quality of life of older adults with epilepsy: a systematic review. Seizure. 2018; 60: 190–7. https://doi.org/10.1016/j.seizure.2018.06.002.Baranowski C.J. The quality of life of older adults with epilepsy: a systematic review. Seizure. 2018; 60: 190–7. https://doi.org/10.1016/j.seizure.2018.06.002.Silva B., Canas-Simião H., Cordeiro S., et al. Determinants of quality of life in patients with drug-resistant epilepsy. Epilepsy Behav. 2019; 100 (Pt A): 106525. https://doi.org/10.1016/j.yebeh.2019.106525.Silva B., Canas-Simião H., Cordeiro S., et al. Determinants of quality of life in patients with drug-resistant epilepsy. Epilepsy Behav. 2019; 100 (Pt A): 106525. https://doi.org/10.1016/j.yebeh.2019.106525.Kwon O.Y., Ahn H.S., Kim H.J. Fatigue in epilepsy: a systematic review and meta-analysis. Seizure. 2017; 45: 151–9. https://doi.org/10.1016/j.seizure.2016.11.006.Kwon O.Y., Ahn H.S., Kim H.J. Fatigue in epilepsy: a systematic review and meta-analysis. Seizure. 2017; 45: 151–9. https://doi.org/10.1016/j.seizure.2016.11.006.Kwan P., Arzimanoglou A., Berg A.T., et al. Definition of drug-resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010; 51 (6): 1069–77. https://doi.org/10.1111/j.1528-1167.2009.02397.x.Kwan P., Arzimanoglou A., Berg A.T., et al. Definition of drug-resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010; 51 (6): 1069–77. https://doi.org/10.1111/j.1528-1167.2009.02397.x.Deckers C.L., Hekster Y.A., Keyser A., et al. Reappraisal of polytherapy in epilepsy: a critical review of drug load and adverse effects. Epilepsia. 1997; 38 (5): 570–5. https://doi.org/10.1111/j.1528-1157.1997.tb01142.x.Deckers C.L., Hekster Y.A., Keyser A., et al. Reappraisal of polytherapy in epilepsy: a critical review of drug load and adverse effects. Epilepsia. 1997; 38 (5): 570–5. https://doi.org/10.1111/j.1528-1157.1997.tb01142.x.ATC/DDD Index 2020. WHO Collaborating Centre for Drug Statistics Methodology. URL: https://www.whocc.no/atc_ddd_index (дата обращения: 25.12.2020).ATC/DDD Index 2020. WHO Collaborating Centre for Drug Statistics Methodology. Available at: https://www.whocc.no/atc_ddd_index (accessed December 25, 2020).Gavrilov Y.V., Shkilnyuk G.G., Valko P.O., et al. Validation of the Russian version of the Fatigue Impact Scale and Fatigue Severity Scale in multiple sclerosis patients. Acta Neurol Scand. 2018; 138 (5): 408–16. https://doi.org/10.1111/ane.12993.Gavrilov Y.V., Shkilnyuk G.G., Valko P.O., et al. Validation of the Russian version of the Fatigue Impact Scale and Fatigue Severity Scale in multiple sclerosis patients. Acta Neurol Scand. 2018; 138 (5): 408–16. https://doi.org/10.1111/ane.12993.Alekseeva T.M., Gavrilov Y.V., Kreis O.A., et al. Fatigue in patients with myasthenia gravis. J Neurol. 2018; 265 (10): 2312–2321. https://doi.org/10.1007/s00415-018-8995-4.Alekseeva T.M., Gavrilov Y.V., Kreis O.A., et al. Fatigue in patients with myasthenia gravis. J Neurol. 2018; 265(10): 2312–2321. https://doi.org/10.1007/s00415-018-8995-4.Alekseeva T.M., Kreis O.A., Gavrilov Y.V., et al. Impact of autoimmune comorbidity on fatigue, sleepiness and mood in myasthenia gravis. J Neurol. 2018; 265 (10): 2312–21. https://doi.org/10.1007/s00415-018-8995-4.Alekseeva T.M., Kreis O.A., Gavrilov Y.V., et al. Impact of autoimmune comorbidity on fatigue, sleepiness and mood in myasthenia gravis. J Neurol. 2018; 265 (10): 2312–21. https://doi.org/10.1007/s00415-018-8995-4.Лебедева А.В., Меликян Э.Г., Степаненко А.Ю. и др. Динамика качества жизни у пациентов с фармакорезистентной эпилепсией при хирургических методах лечения. Вестник Национального медико-хирургического центра им. Н. И. Пирогова. 2011; 6 (3): 67–70.Lebedeva A.V., Melikyan E G., Stepanenko A.Y., et al. Quality of life dynamics in pharmacoresistant epilepsy patients after epilepsy surgery. Bulletin of Pirogov National Medical & Surgical Centre. 2011; 6 (3): 67–70 (in Russ.).Меликян Э.Г., Гехт А.Б. Показатели качества жизни у больных эпилепсией пожилого возраста. Клиническая геронтология. 2011; 17 (7–8): 15–9.Melikyan E.G., Gekht A.B. Quality of life in elderly patients with epilepsy. Clinical Gerontology. 2011; 17 (7–8): 15–9 (in Russ.).Hamid H., Blackmon K., Cong X., et al. Mood, anxiety, and incomplete seizure control affect quality of life after epilepsy surgery. Neurology. 2014; 82 (10): 887–94. https://doi.org/10.1212/wnl.0000000000000183.Hamid H., Blackmon K., Cong X., et al. Mood, anxiety, and incomplete seizure control affect quality of life after epilepsy surgery. Neurology. 2014; 82 (10): 887–94. https://doi.org/10.1212/wnl.0000000000000183.Taylor R.S., Sander J.W., Taylor R.J., Baker G.A. Predictors of health-related quality of life and costs in adults with epilepsy: a systematic review. Epilepsia. 2011; 52 (12): 2168–80. https://doi.org/10.1111/j.1528-1167.2011.03213.x.Taylor R.S., Sander J.W., Taylor R.J., Baker G.A. Predictors of health-related quality of life and costs in adults with epilepsy: a systematic review. Epilepsia. 2011; 52 (12): 2168–80. https://doi.org/10.1111/j.1528-1167.2011.03213.x.Tombini M., Assenza G., Quintiliani L., et al. Epilepsy-associated stigma from the perspective of people with epilepsy and the community in Italy. Epilepsy Behav. 2019; 98 (Pt A): 66–72. https://doi.org/10.1016/j.yebeh.2019.06.026.Tombini M., Assenza G., Quintiliani L., et al. Epilepsy-associated stigma from the perspective of people with epilepsy and the community in Italy. Epilepsy Behav. 2019; 98 (Pt A): 66–72. https://doi.org/10.1016/j.yebeh.2019.06.026.Elsharkawy A.E., Thorbecke R., Ebner A., May T.W. Determinants of quality of life in patients with refractory focal epilepsy who were not eligible for surgery or who rejected surgery. Epilepsy Behav. 2012; 24 (2): 249–55. https://doi.org/10.1016/j.yebeh.2012.03.012.Elsharkawy A.E., Thorbecke R., Ebner A., May T.W. Determinants of quality of life in patients with refractory focal epilepsy who were not eligible for surgery or who rejected surgery. Epilepsy Behav. 2012; 24 (2): 249–55. https://doi.org/10.1016/j.yebeh.2012.03.012.Luoni C., Bisulli F., Canevini M.P., et al. Determinants of health-related quality of life in pharmacoresistant epilepsy: results from a large multicenter study of consecutively enrolled patients using validated quantitative assessments. Epilepsia. 2011; 52 (12): 2181–91. https://doi.org/10.1111/j.1528-1167.2011.03325.x.Luoni C., Bisulli F., Canevini M.P., et al. Determinants of health-related quality of life in pharmacoresistant epilepsy: results from a large multicenter study of consecutively enrolled patients using validated quantitative assessments. Epilepsia. 2011; 52 (12): 2181–91. https://doi.org/10.1111/j.1528-1167.2011.03325.x.Ridsdale L., Wojewodka G., Robinson E., et al. Characteristics associated with quality of life among people with drug-resistant epilepsy. J Neurol. 2017; 264 (6): 1174–84. https://doi.org/10.1007/s00415-017-8512-1.Ridsdale L., Wojewodka G., Robinson E., et al. Characteristics associated with quality of life among people with drug-resistant epilepsy. J Neurol. 2017; 264 (6): 1174–84. https://doi.org/10.1007/s00415-017-8512-1.Aghaei-Lasboo A., Fisher R.S. Methods for measuring seizure frequency and severity. Neurol Clin. 2016; 34 (2): 383–94. https://doi.org/10.1016/j.ncl.2015.11.001.Aghaei-Lasboo A., Fisher R.S. Methods for measuring seizure frequency and severity. Neurol Clin. 2016; 34 (2): 383–94. https://doi.org/10.1016/j.ncl.2015.11.001.Кузьминова М.В. Труд как фактор ресоциализации больных эпилепсией. Современная терапия психических расстройств. 2009: 2: 19–20.Kuzminova M.V. Labor as a factor of resocialization of patients with epilepsy. Current Therapy of Mental Disorders. 2009: 2: 19–20 (in Russ.).Фадин Н.И. Трудовая реабилитация инвалидов в концепции связанного со здоровьем качества жизни. Уровень жизни населения регионов России. 2016; 108 (4): 78–84.Fadin N.I. Employment rehabilitation of disabled persons in the concept of health-related quality of life. Living Standards of the Population in the Regions of Russia. 2016; 108 (4): 78–84 (in Russ.).Fiest K.M., Dykeman J., Patten S.B., et al. Depression in epilepsy: a systematic review and meta-analysis. Neurology. 2013; 80 (6): 590–9. https://doi.org/10.1212/wnl.0b013e31827b1ae0.Fiest K.M., Dykeman J., Patten S.B., et al. Depression in epilepsy: a systematic review and meta-analysis. Neurology. 2013; 80 (6): 590–9. https://doi.org/10.1212/wnl.0b013e31827b1ae0.

The authors declare that there are no conflicts of interest present.