METHODOLOGY ОF ASSESSMENT THE QUALITY OF LIFE IN CHILDREN WITH EPILEPSY
About the author:
Sukhonosova O. Yu.
Type of article:
An important task of modern child neurology is to study the course of epilepsy in children. This is due to many factors, such as significant prevalence of this disease among children, high degree of disability, its effect on a body of a child, which is still growing and forming, growing number of ways to assess the effectiveness of therapy. The purpose of the work is to analyze scientific literature and to study modern scientific trends in defining quality of life in pediatric neurology, in particular for epilepsy, the methodology for assessing quality of life in order to determine the direction of further research and implementation in practical medicine. The analysis of scientific articles on the topic in search engines Google Academy, PubMed, as well as results of the author’s own research on the topical issue of modern children’s neurology, which is epilepsy in children, is presented. The particular importance of childhood and adolescence for the whole future life of a person is noted. Emotional factors, limitations in the social sphere, dependence on environmental factors accompanying a child with epilepsy from the first years of life, may be more important for him and his parents than the symptoms of the disease themselves. Therefore, a combination of data to determine the quality of life and clinical indicators can provide a complete picture of the effect of epilepsy and its treatment on the general well-being of a patient. Currently, the effectiveness of the treatment of epilepsy in children is assessed mainly on such indicators as the degree of remission, reduction in the frequency and decrease in the severity of attacks, severity of changes according to instrumental methods of research. But scientists agree that the goal of treating epilepsy is to improve the quality of life of patients. The article presents the definition of the term “quality of life” in a general sense, “quality of life associated with health”, the history of development of the science of quality of life, tools and requirements for them, according to international standards for assessing quality of life, modern questionnaires and legal aspects of assessing the quality of life in children with epilepsy. Directions for further research on the quality of life in children with epilepsy and introduction into medical practice are identified.
epilepsy, children, quality of life.
- Sukhonosova OYu. Sravnitelnyj analiz pokazatelej zabolevaemosti i rasprostranennosti patologij nervnoj sistemy i epilepsii sredi detskogo naseleniya Ukrainy i Kharkovskoj oblasti. Mіzhnarodnij medichnij zhurnal. 2017;23(1):65-9. [in Russian].
- Kіchula MYa. Strukturnij analіz ponyattya «yakіst zhittya» krіz prizmu yakostі osvіti medichna osvіta. Medichna osvіta. 2018;3:24-30. [in Ukrainian].
- Romanyuk І. «Yakіst zhittya» yak socіalno-ekonomіchna kategorіya ta obyekt statistichnogo doslіdzhennya. Vіsnik Kyyivskoho nacіonalnogo unіversitetu іmenі Tarasa Shevchenka. Ekonomіka. 2014;4:91-8. [in Ukrainian].
- Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55:475-82.
- Kovtyuk NІ, Nechitajlo YuM. Yakіst zhittya ta disfunkcіi snu u shkolyarіv. Aktualnі pitannya pedіatrіi, akusherstva ta gіnekologіi. 2014;1:44-6. [in Ukrainian].
- Ryan R. Heterogeneity and subgroup analyses in Cochrane Consumers and Communication Group reviews: planning the analysis at protocol stage. Cochrane Consumers and Communication Review Group. 2016. р. 2-9. Available from: https://cccrg.cochrane.org
- Kirabira J, Forry JB, Kinengyere AA, Adriko W, Amir A, Rukundo GZ, et al. A systematic review protocol of stigma among children and adolescents with epilepsy. Syst Rev. 2019;8:21.
- Esetova AA, Tuleeva TI, Dixanbaeva GA. Ocenka kachestva zhizni detej s epilepsiej s pomoshhyu oprosnika QOLCE v Yuzhnom Kazaxstane. Nejrokhirurgiya i nevrologiya Kazakhstana. 2017;2(47):20-5. [in Russian].
- Ferro M. Risk factors for health-related quality of life in children with epilepsy: A meta-analysis. Epilepsia. 2014;55(11):1722-31.
- Sadr SS, Javanbakht J, Javidan AN, Ghaffarpour M, Khamse S, Naghshband Z. Descriptive epidemiology: prevalence, incidence, sociodemographic factors, socioeconomic domains, and quality of life of epilepsy: an update and systematic review. Arch Med Sci. 2018;14(4):717-24.
- Kovtyuk NІ. Shhodo mozhlivostі pokrashhannya pokaznikіv yakostі zhittya u dіtej z epіlepsіeyu. Aktualnye problemy transportnoj mediciny. 2015;3.1(41-1):21-4. [in Ukrainian].
- Fayed N, Davis АM, Streiner LD, Rosenbaum PL, Cunningham CE, Lach LM, et al. Children’s perspective of quality of life in epilepsy. Neurology. 2015;5.84(18):1830-7.
- Rachelle RR, Loiselle K, Rausch RJ, Harrison J, Modi AC. Predictors of Trajectories of Epilepsy-Specific Quality of Life among Children Newly Diagnosed with Epilepsy. Epilepsy Behav. 2016;57:202-10.
- Rood JE, Schultz JR, Rausch JR, Modi AC. Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period. Epilepsy & Behavior. 2014;39:38-41.
- Liu S, Yang X, Chen B, Hou Z, An N, Yang M, et al. Clinical Outcomes and Quality of Life Following Surgical Treatment for Refractory Epilepsy: A Systematic Review and Meta-Analysis. Medicine (Baltimore). 2015;94(6):500.
- Loiselle KA, Ramsey RR, Rausch JR, Modi AC. Trajectories of Health-Related Quality of Life Among Children With Newly Diagnosed Epilepsy. J Pediatr Psychol. 2016;41(9):1011-21.
- Rocca FL, Finotti E, Pizza F, Ingravallo F, Gatta M, Bruni O, et al. Psychosocial Profile and Quality of Life in Children With Type 1 Narcolepsy: A Case-Control Study. Sleep. 2016;39(7):1389-98.
- Rosenberg ЕC, Louik J, Conway E, Devinsky O, Friedman D. Quality of Life of Childhood Epilepsy (QOLCE) in pediatric patients enrolled in a prospective, open-label clinical study with cannabidiol (CBD). Epilepsia. 2017;58(8):96-100.
- Conway L, Widjaja E, Smith ML. Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy. Epilepsia Open. 2018;3(1):46-54.
- Choi H, Kim S, Lee H, Kim E. Social Behavioral Problems and the Health-Related Quality of Life in Children and Adolescents with Epilepsy. Psychiatry Investigation. 2016;13(5):488.
- Kolotkin R, Andersen J. A systematic review of reviews: exploring the relationship between obesity, weight loss and health-related quality of life. Clinical Obesity. 2017;7(5):273-89.
- Ullah S, Ali N, Khan A, Nabi M. The prevalence, incidence and etiology of epilepsy. Int. J. Clin. Exp. Neurol. 2014;2:29-39.
- Mula M, Sander JW. Psychosocial aspects of epilepsy: a wider approach. Br J Psychiatry Open. 2016;2:270-4.
- Conway L, Smith M, Ferro M, Speechley K, Connoly M, Snead O, et al. Correlates of health-related quality of life in children with drug resistant epilepsy. Epilepsia. 2016;57(8):1256-64.
- Streiner DL, Norman GR, Cairney J. Health Measurement Scales: A Practical Guide to their Development and Use. Oxford: Oxford University Press. 2015.
- Chan C, Zou G, Wiebe S, Speechley K. Global assessment of the severity of epilepsy (GASE) Scale in children: Validity, reliability, responsiveness. Epilepsia. 2015;56(12):1950-6.
- Goodwin SW, Lambrinos AI, Ferro MA, Sabaz M, Speechley KN. Development and assessment of a shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Epilepsia. 2015;56(6):864-72.
- Conway L, Widjaja E, Smith ML, Speechley KN, Ferro MA. Validating the shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy. Epilepsia. 2017;58(4):646-56.
- de Vries PJ, Franz DN, Curatolo P, Nabbout R, Neary M, Herbst F, et al. Measuring health-related quality of life in tuberous sclerosis complex – psychometric evaluation of three instruments in individuals with refractory epilepsy. Frontiers in Pharmacology. 2018;9.964:1-11.
- Joachim KC, Wilk P, Ryan BL, Speechley KN. Family-centered care in children with epilepsy: Evaluating the Measure of Processes of Care (MPOC-20). Epilepsia. 2016;57(10):1660-8.
Publication of the article:
«Bulletin of problems biology and medicine» Issue 1 (155), 2020 year, 50-58 pages, index UDK 616.853-053.2:613.95