Development of the system for registration and monitoring system for children with cerebral palsy in the Tyumen region (CPUP-Tyumen region)

Full Text

Open Access Open Access
Restricted Access Access granted
Restricted Access Subscription Access

Abstract

Introduction. At the present stage in Russia, there is little research to study the patterns, causes, and real needs of people with cerebral palsy (СР). The source of such knowledge is the registers of children with CP. The system for recording and monitoring CP cases, introduced in the Tyumen Region, is an attempt to study the epidemiological characteristics of the population of CP children patients in terms of clinical manifestations and secondary orthopedic problems by creating an up-to-date register.

The aim of the work is to study the epidemiological characteristics of the population of children with cerebral palsy (CP) in the Tyumen region in terms of clinical manifestations and secondary orthopedic problems using a follow-up surveillance programme for people with cerebral palsy (CPUP) for recording and following-up CP cases) in the Tyumen region

Material and Methods. 685 children (80% of the total number of CP children patients in the region) were registered in the period from January 2014 to December 2016 on the basis of the Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda». The Protocol of the survey of children included the collection of demographic information, assessment of functional mobility, global motor function, hand function, communication functions, function of eating and drinking, Protocol of goniometric measurements, determination of spasticity test, interpretation of Х-ray examinations.

Results. The average age of CP children patients accounted for 10.2 ± 9.7 months (58% — boys, 42% — girls). 78% of children had spastic forms of CP, 4% — dyskinetic forms, 3% — ataxic forms, 15% had mixed CP forms. 50% of children had GMFCS IV–V, 31% had MACS I–II, 51% had CFCS IV–V. 28% had normal Reimers index values of less than 33%, 29% — in the range from 33% to 40%, 43% — more than 40%. GMFCS I CP children did not have hip displacement. 12% of GMFCS II children, 36% of GMFCS III children, 59% of children with and 71% of GMFCS V children had more than 40% of the Reimers Index.

Conclusion. CPUP–Tyumen Region was the first register of CP children patients in terms of demographic characteristics, birth history, risk factors for the development of the disease, clinical forms of cerebral palsy, as well as the frequency of secondary orthopedic complications, which became the basis for the development of a set of preventive measures to improve the quality of life of CP patients.

Full Text

Restricted Access

About the authors

V. A. Zmanovskaya

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Author for correspondence.
Email: 9798301@mail.ru
ORCID iD: 0000-0002-1742-1907

MD, Ph.D.

Russian Federation, Tyumen

E. V. Levitina

Tyumen State Medical University

Email: 9798301@mail.ru
ORCID iD: 0000-0003-2553-7552
Russian Federation, Tyumen

S. A. Bunkova

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0002-8909-8475
Russian Federation, Tyumen

М. N. Butorina

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0003-1545-9044
Russian Federation, Tyumen

N. N. Kharlamova

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0003-3366-7648
Russian Federation, Tyumen

D. M. Dankov

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0003-1526-8723
Russian Federation, Tyumen

А. А. Кокоrina

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0001-5622-6226
Russian Federation, Tyumen

I. L. Rudzevich

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0003-4546-3407
Russian Federation, Tyumen

V. L. Shusharina

Children’s Psychoneurological Treatment and Rehabilitation Center «Nadezhda»

Email: 9798301@mail.ru
ORCID iD: 0000-0002-8607-1285
Russian Federation, Tyumen

S. A. Ushakova

Tyumen State Medical University

Email: 9798301@mail.ru
ORCID iD: 0000-0002-1667-3221
Russian Federation, Tyumen

References

  1. Бадалян Л.О., Журба Л.Т., Тимонина О.В. Детские церебральные параличи. Киев: Здоров’я; 1988.
  2. Cans C., Surman G., McManus V., Coghlan D., Hensey O., Johnson A. Cerebral palsy registries. Semin. Pediatr. Neurol. 2004; 11(1): 18-23. DOI: http://doi.org/10.1016/j.spen.2004.01.004
  3. Rosenbaum P., Paneth N., Leviton A., Goldstein M., Bax M., Damiano D., et al. A report: The definition and classification of cerebral palsy April 2006. Dev. Med. Child Neurol. Suppl. 2007; 109: 8-14.
  4. Palisano R., Rosenbaum P., Walter S., Russell D., Wood E., Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev. Med. Child Neurol. 1997; 39(4): 214-23. DOI: http://doi.org/10.1111/j.1469-8749.1997.tb07414.x
  5. Cruz M., Jenkins R., Silberberg D. The burden of brain disorders. Science. 2006; 312(5770): 53. DOI: http://doi.org/10.1126/science.312.5770.53b
  6. Palisano R.J., Rosenbaum P., Bartlett D., Livingston M.H. Content validity of the expanded and revised Gross Motor Function Classification System. Dev. Med. Child Neurol. (2008); 50(10): 744-50. DOI: http://doi.org/10.1111/j.1469-8749.2008.03089.x
  7. Eliasson A.C., Krumlinde‐Sundholm L., Rösblad B., Beckung E., Arner M., Öhrvall A.M., et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: Scale development and evidence of validity and reliability. Dev. Med. Child Neurol. 2006; 48(7): 549-54. DOI: http://doi.org/10.1017/S0012162206001162
  8. Kentish M., Wynter M., Snape N., Boyd R. Five‐year outcome of state‐wide hip surveillance of children and adolescents with cerebral palsy. J. Pediatr. Rehabil. Med. 2011; 4(3): 205-17. DOI: http://doi.org/10.3233/PRM-2011-0176
  9. Sellers D., Mandy A., Pennington L., Hankins M., Morris C. Development and reliability of a system to classify eating and drinking ability of people with cerebral palsy. Dev. Med. Child Neurol. 2013; 56(3): 245-51. DOI: http://doi.org/10.1111/dmcn.12352
  10. Cans C. Surveillance of cerebral palsy in Europe: A collaboration of cerebral palsy surveys and registers. Dev. Med. Child Neurol. 2000; 42(12): 816-24. DOI: http://doi.org/10.1017/s0012162200001511
  11. WHO. International classification of functioning, disability and health. Geneva; 2001. Available at: https://www.who.int/classifications/icf/en/
  12. WHO. World report on disability. Geneva; 2011. Available at: https://www.who.int/disabilities/world_report/2011/report.pdf
  13. Almasri N.A., Saleh M., Abu-Dahab S., Malkawi S.H., Nordmark E. Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan). Child Care Health Dev. 2018; 44(1): 131-9. DOI: http://doi.org/10.1111/cch.12527
  14. Connelly A., Flett P., Graham H.K., Oates J. Hip surveillance in Tasmanian children with cerebral palsy. J. Paediatr. Child Health. 2009; 45(7-8): 437-43. DOI: http://doi.org/10.1111/j.1440-1754.2009.01534.x
  15. Hägglund G., Andersson S., Düppe H., Lauge-Pedersen H., Nordmark E., Westbom L. Prevention of hip dislocation in children with cerebral palsy. The first ten years’ experience of a population-based prevention programme. J. Bone Joint Surg. Br. 2005; 87(1): 95-101.
  16. Hägglund G., Lauge-Pedersen H., Wagner P. Characteristics of children with hip displacement in cerebral palsy. BMC Musculoskelet. Disord. 2007; 8: 101. DOI: http://doi.org/10.1186/1471-2474-8-101
  17. Terjesen T. The natural history of hip development in cerebral palsy. Dev. Med. Child Neurol. 2012; 54(10): 951-7. DOI: http://doi.org/10.1111/j.1469-8749.2012.04385.x
  18. Elkamil A.I., Andersen G.L., Hägglund G., Lamvik T., Skranes J., Vik T. Prevalence of hip dislocation among children with cerebral palsy in regions with and without a surveillance programme: A cross sectional study in Sweden and Norway. BMC Musculoskelet. Disord. 2011; 12: 284. DOI: http://doi.org/10.1186/1471-2474-12-284
  19. Hidecker M.J., Paneth N., Rosenbaum P.L., Kent R.D., Lillie J., Eulenberg J.B., et al. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Dev. Med. Child Neurol. 2011; 53(8): 704-10. DOI: http://doi.org/10.1111/j.1469-8749.2011.03996.x
  20. Soo B., Howard J.J., Boyd R.N., Reid S.M., Lanigan A., Wolfe R., et al. Hip displacement in cerebral palsy. J. Bone Joint Surg. Am. 2006; 88(1): 121-9. DOI: http://doi.org/10.2106/JBJS.E.00071

Supplementary files

There are no supplementary files to display.

Statistics

Views

Abstract: 134

Article Metrics

Metrics Loading ...

Refbacks

  • There are currently no refbacks.

Copyright (c) 2020 Zmanovskaya V.A., Levitina E.V., Bunkova S.A., Butorina М.N., Kharlamova N.N., Dankov D.M., Кокоrina А.А., Rudzevich I.L., Shusharina V.L., Ushakova S.A.

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

This website uses cookies

You consent to our cookies if you continue to use our website.

About Cookies