ABSTRACT

INTRODUCTION. Quality of life is a comprehensive characteristic of the standard of living, consisting of objective and subjective living conditions of the population. Specialized questionnaires are used to assess the quality of life in adults and children. In particular, the general PedsQL questionnaire and its specialized modules are used to assess the quality of life of children with various diseases.

AIM. To evaluate the use of questionnaires in patients with various diseases, such as cardiovascular pathology, gastrointestinal diseases, neuromuscular diseases, etc. One of the severe neuromuscular diseases is spinal muscular atrophy, characterized by progressive symptoms of flaccid paralysis and muscle atrophy due to degeneration of α-motor neurons of the anterior horns of the spinal cord. This disease most often manifests itself in childhood or infancy and significantly worsens the quality of life of young patients. In the world, PedsQL 3.0 Neuromuscular Module is used to assess the quality of life of children with spinal muscular atrophy, to determine the level of their physical, psychosocial and material well-being. This questionnaire has proven itself to be the most convenient not only for parents, but also for children.

CONCLUSION. Different questionnaires are used for different groups of diseases, but all questionnaires have a common denominator in the form of an assessment of physical and psychosocial well-being indicators.

KEYWORDS: spinal muscular atrophy, children's quality of life, questionnaire, PedsQL, PedsQL 3.0 Neuromuscular Module, social well-being

For citation: Komarova E.A., Kotov A.S. Quality of Life in Children with Spinal Muscular Atrophy: A Review. Comorbidity Neurology. 2024; 1 (4): 89-95. https://doi.org/10.62505/3034-185x-2024-1-4-89-95

For correspondence: Eugenia A. Komarova, Postgraduate of the Department of Neurology, M.F. Vladimirsky Moscow Regional Research and Clinical Institute, Moscow, Russia, e-mail: manfromthestars542@gmail.com

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ADDITIONAL INFORMATION

Eugenia A. Komarova, Postgraduate of the Department of Neurology, M.F. Vladimirsky Moscow Regional Research and Clinical Institute, Moscow, Russia. E-mail: manfromthestars542@gmail.com. ORCID: https://orcid.org/0000-0003-4482-7432

Alexey S. Kotov, Dr. Sci. (Med.), Associate Professor of the Department of Neurology, M.F. Vladimirsky Moscow Regional Research and Clinical Institute, Moscow, Russia. E-mail: alex-013@yandex.ru ORCID: https://orcid.org/0000-0003-2988-5706

Author contributions. All authors confirm the compliance of their authorship, according to international ICMJE criteria (all authors made a significant contribution to the development of the concept, research and preparation of the article, read and approved the final version before publication). Komarova E.A. – formation of ideas, formulation and development of key goals and objectives, analysis of literary sources; Kotov A.S. – preparation and editing of the text, approval of the final version of the article.

Funding. This study was not supported by any external sources of funding.

Disclosure. The authors declare that they have no competing interests.

The content is available under the Creative Commons Attribution 4.0 License.

©2024. Eugenia A. Komarova, Alexey S. Kotov