epilepsiaEpilepsy and paroxysmal conditionsЭпилепсия и пароксизмальные состояния2077-83332311-4088IRBIS LLCepilepsia-190Research ArticleSCIENTIFIC SURVEYSНАУЧНЫЕ ОБЗОРЫPARTICULARS OF ASSESSMENT OF QUALITY OF LIFE IN PEDIATRIC AND JUVENILE EPILEPTIC PATIENTSОСОБЕННОСТИ ОЦЕНКИ КАЧЕСТВА ЖИЗНИ У БОЛЬНЫХ ЭПИЛЕПСИЕЙ ДЕТСКОГО И ПОДРОСТКОВОГО ВОЗРАСТАМеликянЭ. Г.MelikianE. G.

Кафедра неврологии с курсом нейрохирургии

Department of Neurology with Neurosurgery course

МухинК. Ю.MukhinК. Yu.

Кафедра неврологии и нейрохирургии педиатрического факультета

Department of Neurology and Neurosurgery, Pediatric Faculty

ИУВ ФГУ «Национальный медико-хирургический Центр им. Н.И. Пирогова Росздрава», МоскваРоссияIUV FGU «Roszdrav National medical and surgical center named after N.I. Pirogov», MoscowRussian FederationГОУ ВПО РГМУ Росздрава, МоскваРоссияGOU VPO RSMU of Roszdrav, MoscowRussian Federation201024082016223238Copyright © Melikian E.G., Mukhin К.Y., 20162016Меликян Э.Г., Мухин К.Ю.Melikian E.G., Mukhin К.Y.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/190

Nowadays, normalization of quality of life is considered to be one of key targets during epilepsy treatment. Given a high prevalence of epilepsy in pediatric and juvenile patients, and particular importance of this age period for the whole further human life, studying of quality of life is a topical issue. However, the first serious studies of quality of life in pediatric and juvenile epileptic patients have only begun in the 90th of the 20th century, i.e., significantly later than those in adult epileptic patients. The insufficient number of scales and methods in pediatrics is linked to objective impediments with definition of quality of life in children and adolescents. This article highlights the main issues of studying quality of life in this age category, shows the particulars of studying quality of life in various age categories and marks out the tasks for future investigations.

На современном этапе нормализация качества жизни рассматривается в качестве одной из ключевых задач при лечении эпилепсии. Учитывая высокую распространенность эпилепсии в детском и подростковом возрасте, особую важность этого возрастного периода для всей последующей жизни человека, исследование качества жизни является актуальной задачей. Однако первые серьезные исследования качества жизни у детей и подростков с эпилепсией начались только в 90-е годы 20 века, т. е. значительно позже, чем у взрослых больных эпилепсией. Недостаточное количество шкал и методик в педиатрии сопряжено с объективными особенностями и трудностями в определении качества жизни у детей и подростков. В статье расс мотрены основные проблемы исследования качества жизни в этой возрастной категории, показаны особенности исследования качества жизни в различных возрастных категориях, намечены задачи дальнейших исследований.

эпилепсиякачество жизнидетиподросткиepilepsyquality of lifechildrenadolescentsReferencesБаранов А.А., Альбицкий В.Ю., Валиуллина С.А. Изучение качества жизни детей – важнейшая задача современной педиатрии. // Российский педиатрический журнал. – 2005. – № 5. – С. 30–34.Баранов А.А., Альбицкий В.Ю., Валиуллина С.А. Изучение качества жизни детей – важнейшая задача современной педиатрии. // Российский педиатрический журнал. – 2005. – № 5. – С. 30–34.Белоусов Д.Ю. Качество жизни, связанное со здоровьем детей: обзор литературы. // Качественная клиническая практика. – 2008. – №2. – С. 28 –38.Белоусов Д.Ю. Качество жизни, связанное со здоровьем детей: обзор литературы. // Качественная клиническая практика. – 2008. – №2. – С. 28 –38.Карлов В.А. Эпилепсия как клиническая и нейрофизиологическая проблема // Журнал неврологии и психиатрии им. С.С. Корсакова. – 2000. – Т. 100, № 9. – С. 7-15.Карлов В.А. Эпилепсия как клиническая и нейрофизиологическая проблема // Журнал неврологии и психиатрии им. С.С. Корсакова. – 2000. – Т. 100, № 9. – С. 7-15.Карлов В.А., Петрухин А.С. Эпилепсия у подростков // Неврология и психиатрия. – 2002. – №9. – C. 9–13.Карлов В.А., Петрухин А.С. Эпилепсия у подростков // Неврология и психиатрия. – 2002. – №9. – C. 9–13.Лукьянова Е.М. Оценка качества жизни в педиатрии. // Качественная клиническая практика. – 2002. – №4. – С. 34–42.Лукьянова Е.М. Оценка качества жизни в педиатрии. // Качественная клиническая практика. – 2002. – №4. – С. 34–42.Меликян Э.Г., Гехт А.Б. Основные возможности исследования качества жизни в эпиептологии. II Международный форум неврологов. /Материалы конференции. 13-14 сентября. – Ереван. – 2008. – С.127–130.Меликян Э.Г., Гехт А.Б. Основные возможности исследования качества жизни в эпиептологии. II Международный форум неврологов. /Материалы конференции. 13-14 сентября. – Ереван. – 2008. – С.127–130.Меликян Э.Г., Мухин К.Ю. Педиатрические аспекты качества жизни больных эпилепией // Русский журнал детской неврологии. – 2009. – Том IV. – Вып. 4. – С. 3–13.Меликян Э.Г., Мухин К.Ю. Педиатрические аспекты качества жизни больных эпилепией // Русский журнал детской неврологии. – 2009. – Том IV. – Вып. 4. – С. 3–13.Austin J.K., Shafer P.O., Deering J.B. Epilepsy familiarity, knowledge and perception of stigma: report from a survey of adolescents in the general population // Epilepsy Behav. – 2002. –Vol. 3, №4. – P. 368–375.Austin J.K., Shafer P.O., Deering J.B. Epilepsy familiarity, knowledge and perception of stigma: report from a survey of adolescents in the general population // Epilepsy Behav. – 2002. –Vol. 3, №4. – P. 368–375.Buck D., Smith M., Appleton R., et al. The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale // Epilepsy Behav. – 2007. – Vol. 10, №1. – P.38–43.Buck D., Smith M., Appleton R., et al. The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale // Epilepsy Behav. – 2007. – Vol. 10, №1. – P.38–43.Camfield C., Breau L., Camfield P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use // Epilepsia. – 2001. – Vol. 42, №1. – P. 104–112.Camfield C., Breau L., Camfield P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use // Epilepsia. – 2001. – Vol. 42, №1. – P. 104–112.Carpay H.A., Vermeulen J., Stroink H., et al.Seizure severity in children with epilepsy: a parent-completed scale compared with clinical data // Epilepsia. – 1996. – Vol. 38, №3. – P. 346–352.Carpay H.A., Vermeulen J., Stroink H., et al.Seizure severity in children with epilepsy: a parent-completed scale compared with clinical data // Epilepsia. – 1996. – Vol. 38, №3. – P. 346–352.Chadwick D. (ed). The quality of life and the quality of care in epilepsy. –London: Royal Society of Medicine. – 1990.Chadwick D. (ed). The quality of life and the quality of care in epilepsy. –London: Royal Society of Medicine. – 1990.Connolly M.A., Johnson J.A. Measuring quality of life in pediatric patients // Pharmacoeconomics. – 1999. – Vol. 16, №6. – P. 605–625.Connolly M.A., Johnson J.A. Measuring quality of life in pediatric patients // Pharmacoeconomics. – 1999. – Vol. 16, №6. – P. 605–625.Cowan J., Baker G.A. A review of subjective impact measures for use with children and adolescents with epilepsy // Qual Life Res. – 2004. – Vol. 13, №8. – P. 1435–1443.Cowan J., Baker G.A. A review of subjective impact measures for use with children and adolescents with epilepsy // Qual Life Res. – 2004. – Vol. 13, №8. – P. 1435–1443.Cramer J.A., Westbrook L.E., Devinsky O., et al. Development of a quality of life inventory for adolescents: the QOLIEAD-48 // Epilepsia. – 1999. – Vol. 40, №8. – P.1114–1121.Cramer J.A., Westbrook L.E., Devinsky O., et al. Development of a quality of life inventory for adolescents: the QOLIEAD-48 // Epilepsia. – 1999. – Vol. 40, №8. – P.1114–1121.Creemens J., Eiser C., Blades M. Factors influencing agreement between child selfreport and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales // Health Qual Life Outcomes. – 2006. – Vol. 4. – P. 58.Creemens J., Eiser C., Blades M. Factors influencing agreement between child selfreport and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales // Health Qual Life Outcomes. – 2006. – Vol. 4. – P. 58.Davis E., Davies B., Waters E., Priest N. The relationship between proxy reported health-related quality of life and parental distress: gender differences // Child Care Health Dev. – 2008. – Vol. 3, №6. – P. 830–837.Davis E., Davies B., Waters E., Priest N. The relationship between proxy reported health-related quality of life and parental distress: gender differences // Child Care Health Dev. – 2008. – Vol. 3, №6. – P. 830–837.Dodrill C.B., Batzel L.W. Issues in quality of life assessment. In: Engel J., Pedley Jr T.A., ed. Epilepsy: a comprehensive textbook. Philadelphia (PA): Lippincott-Raven Publishers. – 1997. – P. 2227–2231.Dodrill C.B., Batzel L.W. Issues in quality of life assessment. In: Engel J., Pedley Jr T.A., ed. Epilepsy: a comprehensive textbook. Philadelphia (PA): Lippincott-Raven Publishers. – 1997. – P. 2227–2231.Eiser C., Jenney M. Measuring quality of life. //Arch Dis Child. – 2007. – Vol. 92, №4. – P.348-350.Eiser C., Jenney M. Measuring quality of life. //Arch Dis Child. – 2007. – Vol. 92, №4. – P.348-350.Hoare P., Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure // Dev Med Child Neurol. – 1995. – Vol. 37, №8. – P. 689–696.Hoare P., Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure // Dev Med Child Neurol. – 1995. – Vol. 37, №8. – P. 689–696.Lach L.M., Ronen G.M., Rosenbaum P.L., et al. Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and comorbidity // Qual Life Res. – 2006. – Vol. 15, №7. – P. 1161–1171.Lach L.M., Ronen G.M., Rosenbaum P.L., et al. Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and comorbidity // Qual Life Res. – 2006. – Vol. 15, №7. – P. 1161–1171.Landgraf J.M., Abetz L.N. Measuring health outcomes in pediatric populations: issue in psychometrics and application. //In: Spilker B., ed. Quality of life and pharmacoeconomics in clinical trials. – Philadelphia: Lippincott-Raven Publishers. – 1996.Landgraf J.M., Abetz L.N. Measuring health outcomes in pediatric populations: issue in psychometrics and application. //In: Spilker B., ed. Quality of life and pharmacoeconomics in clinical trials. – Philadelphia: Lippincott-Raven Publishers. – 1996.McEwan M., Espie C., Metcalfe J. A systematic review of the contribution of qualitative research to the study of quality of life in children and adolescents with epilepsy // Seizure. – 2004. – Vol. 13, №1. – P. 3–14.McEwan M., Espie C., Metcalfe J. A systematic review of the contribution of qualitative research to the study of quality of life in children and adolescents with epilepsy // Seizure. – 2004. – Vol. 13, №1. – P. 3–14.Millichap J.G. William Lennox. / In: Ashwal S., ed. The founders of child neurology. – San Francisco: Norman Publishing. – 1990. – P. 758–763.Millichap J.G. William Lennox. / In: Ashwal S., ed. The founders of child neurology. – San Francisco: Norman Publishing. – 1990. – P. 758–763.Moffat C., Dorris L., Connor L., Espie C.A. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy // Epilepsy Behav. – 2009. – Vol. 14, №1. – P. 179–189.Moffat C., Dorris L., Connor L., Espie C.A. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy // Epilepsy Behav. – 2009. – Vol. 14, №1. – P. 179–189.Ronen G.M., Streiner D.L., Rosenbaum P. Health-related quality of life in children with epilepsy. Development and validation of self-report and parent proxy measures // Epilepsia. 2003. – Vol. 44, №4. – P. 598–612.Ronen G.M., Streiner D.L., Rosenbaum P. Health-related quality of life in children with epilepsy. Development and validation of self-report and parent proxy measures // Epilepsia. 2003. – Vol. 44, №4. – P. 598–612.Rosenbaum P., Saigal S. Measuring health related quality of life in pediatric populations. /In: Spilker B., ed. Quality of life and pharmacoeconomics in clinical trials. 2. – New York. – ippincott-Raven. – 1996. – P. 785–791.Rosenbaum P., Saigal S. Measuring health related quality of life in pediatric populations. /In: Spilker B., ed. Quality of life and pharmacoeconomics in clinical trials. 2. – New York. – ippincott-Raven. – 1996. – P. 785–791.Sabaz M., Cairns D.R., Lawson J.A., et al. Validation of a new quality of life measure for children with epilepsy // Epilepsia. – 2000. – Vol. 41, №6. – P. 765–774.Sabaz M., Cairns D.R., Lawson J.A., et al. Validation of a new quality of life measure for children with epilepsy // Epilepsia. – 2000. – Vol. 41, №6. – P. 765–774.Sherman E.M.S., Slick D.J., Connolly M.B., et al. Validity of three measures of health related quality of life in children with intractable epilepsy // Epilepsia. – 2002. – Vol. 43, №10. – P. 1230–1238.Sherman E.M.S., Slick D.J., Connolly M.B., et al. Validity of three measures of health related quality of life in children with intractable epilepsy // Epilepsia. – 2002. – Vol. 43, №10. – P. 1230–1238.Townshend K.H., Dorris L., McEwan M.J., et al. Development and validation of a measure of the impact of epilepsy on a young person’s quality of life: Glasgow epilepsy outcome scale for young persons (GEOS-YP) // Epilepsy Behav. – 2008. – Vol. 12, №1. – P.115–123.Townshend K.H., Dorris L., McEwan M.J., et al. Development and validation of a measure of the impact of epilepsy on a young person’s quality of life: Glasgow epilepsy outcome scale for young persons (GEOS-YP) // Epilepsy Behav. – 2008. – Vol. 12, №1. – P.115–123.Theunissen N.C., Vogels T.G., Koopman H.M., et al. The proxy problem: child report versus parent report in health-related quality of life research // Qual Life Res. 1998. –Vol. 7, №5. – P. 387–397.Theunissen N.C., Vogels T.G., Koopman H.M., et al. The proxy problem: child report versus parent report in health-related quality of life research // Qual Life Res. 1998. –Vol. 7, №5. – P. 387–397.Upton P., Lawford J., Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature // Qual Life Res. –2008. – Vol. 17, №6. – P. 895–913.Upton P., Lawford J., Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature // Qual Life Res. –2008. – Vol. 17, №6. – P. 895–913.van Empelen R., Jennekens-Schinkel A., van Rijaen P.C., et al. Health-related quality of life and self-perceived competence of children assessed before and up to two years after epilepsy surgery // Epilepsia. – 2005. – Vol. 4, №2. – P. 258 –271.van Empelen R., Jennekens-Schinkel A., van Rijaen P.C., et al. Health-related quality of life and self-perceived competence of children assessed before and up to two years after epilepsy surgery // Epilepsia. – 2005. – Vol. 4, №2. – P. 258 –271.Varni J.W., Seid M., Knight T.S., et al. The PedsQL 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making // Journal of Behavioral Medicine. – 2002. – Vol. 25, №2. – P. 175–193.Varni J.W., Seid M., Knight T.S., et al. The PedsQL 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making // Journal of Behavioral Medicine. – 2002. – Vol. 25, №2. – P. 175–193.Varni J.W., Limbers C.A. The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents // Pediatr Clin North Am. – 2009. – Vol. 56, №4. –P. 843–863.Varni J.W., Limbers C.A. The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents // Pediatr Clin North Am. – 2009. – Vol. 56, №4. –P. 843–863.Verhey L.H., Kulik D.M., Ronen G.M., et al. Canadian Pediatric Epilepsy Network. Quality of life in childhood epilepsy: what is the level of agreement between youth and their parents? // Epilepsy Behav. – 2009. – Vol. 14, №2. – P.407– 410.Verhey L.H., Kulik D.M., Ronen G.M., et al. Canadian Pediatric Epilepsy Network. Quality of life in childhood epilepsy: what is the level of agreement between youth and their parents? // Epilepsy Behav. – 2009. – Vol. 14, №2. – P.407– 410.Yam W.K., Ronen G.M., Cherk S., et al. Health-related quality of life of children with epilepsy in Hong Kong: how does it compare with that of youth with epilepsy in Canada? // Epilepsy Behav. – 2008. –Vol. 12, №3. – P. 419–426.Yam W.K., Ronen G.M., Cherk S., et al. Health-related quality of life of children with epilepsy in Hong Kong: how does it compare with that of youth with epilepsy in Canada? // Epilepsy Behav. – 2008. –Vol. 12, №3. – P. 419–426.

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