Оценка качества жизни педиатрических пациентов с рассеянным склерозом

Ахметгалеева Н.Ф., Симанив Т.О., Бахтиярова К.З. Оценка качества жизни педиатрических пациентов с рассеянным склерозом. Consilium Medicum. 2025;27(2):88–93. DOI: 10.26442/20751753.2025.2.203140

© ООО «КОНСИЛИУМ МЕДИКУМ», 2025 г.

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Akhmetgaleeva NF, Simaniv TO, Bakhtiyarova KZ. Assessment of the quality of life of pediatric patients with multiple sclerosis. Consilium Medicum. 2025;27(2):88–93. DOI: 10.26442/20751753.2025.2.203140

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Аннотация

Обоснование. Рассеянный склероз (РС) – хроническое демиелинизирующее заболевание, дебют которого в 5% случаев приходится на детский возраст. РС оказывает большое влияние на качество жизни (КЖ) детей, особенно в периоды обострения заболевания.
Цель. Оценить КЖ педиатрических пациентов с РС и выявить факторы, которые влияют на него в наибольшей степени.
Материалы и методы. Оценивалось КЖ 22 пациентов с РС в обострении и ремиссии (отсутствие обострений в течение не менее 6 мес) и 20 здоровых детей, сопоставимых по полу и возрасту. Оценка КЖ выполнена с помощью опросника Pediatric Quality of Life Questionnaire.
Результаты. У всех детей в стадии обострения заболевания отмечалось достоверное снижение уровня КЖ по сравнению со стадией ремиссии (р<0,001), при этом показатели КЖ в стадии ремиссии не отличались от таковых у здоровых детей (p=0,294). КЖ у детей с РС в стадии обострения ниже, чем у здоровых детей (p<0,001). Установлено, что чем выше степень инвалидизации по шкале EDSS, тем ниже КЖ. Длительность заболевания и возраст дебюта не влияют на КЖ пациентов.
Заключение. Обострения РС снижают КЖ детей, причем данное снижение коррелирует с тяжестью неврологического дефицита. При достижении и поддержании ремиссии КЖ восстанавливается и не отличается от такового у здоровых детей.

Ключевые слова: рассеянный склероз, качество жизни, дети, опросник PedsQL 4.0

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Background. Multiple sclerosis (MS) is a chronic Demyelinating disease, the onset of MS occurs in childhood in 5% of cases. MS has a great impact on the quality of life (QoL) of children, especially during periods of exacerbation of the disease.
Aim. To assess the quality of life of pediatric patients with MS and identification the factors that have impact on it.
Materials and methods. Examined 22 patients with MS in exacerbation and remission (no exacerbations for 6 months) and 20 healthy children, comparable in gender and age. The quality of life of children was assessed using the Pediatric Quality of Life Questionnaire – PedsQL 4.0.
Results. QoL of children have significally decreased during exacerbation of MS compared with remission (p<0.001). The indicators of QoL in remission of MS are not differ from those in healthy controls (p=0.294). QoL in children with MS during the period of exacerbation is lower than in healthy controls (p<0.001). Lower QoL is associated with more disability on the EDSS scale. The duration of the MS and the age of onset do not affect the QoL of patients.
Conclusion. Exacerbations of multiple sclerosis reduce the quality of life of children, and QoL decrease correlates with the severity of neurological deficits. When remission is achieved and maintained, the quality of life is restored and does not differ from that of healthy children.

Keywords: multiple sclerosis, quality of life, children, PedsQL 4.0 Questionnaire

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Список литературы

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1. Sivertseva SA, Bykova OV, Bakhtiiarova KZ, et al. Clinical cases of multiple sclerosis in children with cerebral palsy. S.S. Korsakov Journal of Neurology and Psychiatry. 2018;118(8-2):55-61 (in Russian). DOI:10.17116/jnevro201811808255
2. Hardy D, Chitnis T, Waubant E, Banwell B. Preventing Multiple Sclerosis: The Pediatric Perspective. Front Neurol. 2022;13:802380. DOI:10.3389/fneur.2022.802380
3. Ghezzi A, Amato MP, Makhani N, et al. Pediatric multiple sclerosis: Conventional first-line treatment and general management. Neurology. 2016;87(19):2068. DOI:10.1212/WNL.0000000000002823
4. MacAllister WS, Christodoulou C, Troxell R, et al. Fatigue and quality of life in pediatric multiple sclerosis. Mult Scler. 2009;(15):1502-8. DOI:10.1177/1352458509345902
5. O’Mahony J, Marrie RA, Laporte A, et al. Pediatric-onset multiple sclerosis is associated with reduced parental health–related quality of life and family functioning. Mult Scler. 2019;(25):1661-72. DOI:10.1177/1352458518796676
6. Lanzillo R, Chiodi A, Carotenuto A, et al. Quality of life and cognitive functions in early onset multiple sclerosis. Eur J Paediatr Neurol. 2016;(20):158-63. DOI:10.1016/j.ejpn.2015.08.005
7. Ostojic S, Stevanovic D, Jancic J. Quality of life and its correlates in adolescent multiple sclerosis patients. Mult Scler Relat Disord. 2016;(10):57-62. DOI:10.1016/j.msard.2016.08.013
8. Florea A, Maurey H, le Sauter M, et al. Fatigue, depression, and quality of life in children with multiple sclerosis: A comparative study with other demyelinating diseases. Dev Med Child Neurol. 2020;(62):241-4. DOI:10.1111/dmcn.14242
9. Mrosková S, Klímová E, Majerníková L, Tkáčová Ľ. Quality of Life of Children and Adolescents with Multiple Sclerosis-A Literature Review of the Quantitative Evidence. Int J Environ Res Public Health. 2021;18(16):8645. DOI:10.3390/ijerph18168645
10. Mowry EM, Julian LJ, Im-Wang S, et al. Health-related quality of life is reduced in pediatric multiple sclerosis. Pediatr Neurol. 2010;43:97-102. DOI:10.1016/j.pediatrneurol.2010.03.007
11. Yeh EA, Grover SA, Powell VE, et al. Impact of an electronic monitoring device and behavioral feedback on adherence to multiple sclerosis therapies in youth: Results of a randomized trial. Qual Life Res. 2017;(26):2333-49. DOI:10.1007/s11136-017-1571-z
12. Nunan-Saah J, Paulraj SR, Waubant E, et al. Neuropsychological correlates of multiple sclerosis across the lifespan. Mult Scler. 2015;21:1355-64. DOI:10.1177/1352458515586088
13. Williams MT, Sivaswamy L. Quality of Life in Multiple Sclerosis. Pediatr Neurol Briefs. 2020;34:14. DOI:10.15844/pedneurbriefs-34-14
14. Banwell BL, Anderson PE. The cognitive burden of multiple sclerosis in children. Neurology. 2005;64(5):891-4. DOI:10.1212/01.WNL.0000152896.35341.51Banwell
15. Amato MP, Goretti B, Ghezzi A, et al. Cognitive and psychosocial features of childhood and juvenile MS. Neurology. 2008;70(20):1891-7. DOI:10.1212/01.wnl.0000312276.23177.fa
16. Till C, Udler E, Ghassemi R, et al. Factors associated with emotional and behavioral outcomes in adolescents with multiple sclerosis. Mult Scler. 2012;18(8):1170-80. DOI:10.1177/1352458511433918
17. Рortaccio E, De Meo E, Bellinvia A, Amato MP. Cognitive issues in pediatric multiple sclerosis. Brain Sci. 2021;11(4):442. DOI:10.3390/brainsci11040442
18. Parrish JB, Fields E. Cognitive functioning in patients with pediatric-onset multiple sclerosis, an Updated Review and Future Focus. Children (Basel). 2019;6(2):21. DOI:10.3390/children6020021
19. Tarantino S, Proietti Checchi M, et al. Neuropsychological performances, quality of life, and psychological issues in pediatric onset multiple sclerosis: a narrative review. Neurol Sci. 2024;45(5):1913-30. DOI:10.1007/s10072-023-07281-y
20. Zarubina NV, Mozokina KS, Spirin NN. Relationship of depressive disorders with MRI picture of patients with MS. Eurasian Union of Scientists. 2020;6-5(75) (in Russian). DOI:10.31618/ESU.2413-9335.2020.5.75.863
21. Nikitina TP. Razrabotka i otsenka svoistv russkoi versii oprosnika Pedsql dlia issledovaniia kachestva zhizni detei 8-18 let : avtoref. dis. ... kand. med. nauk. Saint Petersburg. 2004 (in Russian).
22. Malkova ON, Jerusalemskii AP. Health-related quality of life in patients with multiple sclerosis. Multiple sclerosis. 2006;116-97. (in Russian).
23. Boiko AN, Bakhtiyarova KZ, Sherman MA, et al. Results of a study of the quality of life in patients with highly active multiple sclerosis in Russia. Neurology, Neuropsychiatry, Psychosomatics. 2022;14(Suppl. 1):9-15 (in Russian). DOI:10.14412/2074-2711-2022-1S-9-15
24. Waldman A, Ness J, Pohl D, et al. Pediatric multiple sclerosis: clinical features and outcome. Neurology. 2016;87(9 Suppl. 2):74-81. DOI:10.1212/WNL.0000000000003028
25. Lulu S, Julian L, Shapiro E, et al. Treatment adherence and transitioning youth in pediatric multiple sclerosis. Mult Scler Relat Disord. 2014;(3):689-95. DOI:10.1016/j.msard.2014.09.088
26. McKay KA, Ernstsson O, Manouchehrinia A, et al. Determinants of quality of life in pediatric- and adult-onset multiple sclerosis. Neurology. 2020;94(9):932-41. DOI:10.1212/WNL.0000000000008667
27. Ghezzi A, Bianchi A, Baroncini D, et al. Future Study Group A multicenter, observational, prospective study of self- and parent-reported quality of life in adolescent multiple sclerosis patients self-administering interferon-β1a using RebiSmar-the FUTURE study. Neurol Sci. 2017;38(11):1999-2005. DOI:10.1007/s10072-017-3091-6

Авторы

Н.Ф. Ахметгалеева*^1,2, Т.О. Симанив³, К.З. Бахтиярова¹

¹ФГБОУ ВО «Башкирский государственный медицинский университет» Минздрава России, Уфа, Россия;
²ГБУЗ «Республиканская детская клиническая больница», Уфа, Россия;
³ФГБНУ «Научный центр неврологии», г. Москва, Россия
*nailya_9292@list.ru

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Nailya F. Akhmetgaleeva*^1,2, Taras O. Simaniv³, Klara Z. Bakhtiyarova¹

¹Bashkir State Medical University, Ufa, Russia;
²Republican Children’s Clinical Hospital, Ufa, Russia;
³Scientific Center of Neurology, Moscow, Russia
*nailya_9292@list.ru

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