Quality of life in children with Duchenne muscular dystrophy and other neurological disorders: age-related differences and strategies for optimizing healthcare.

He quality of life of children with neurological diseases remains one of the most urgent and complex topics in modern medicine and social policy. Among these diseases, Duchenne myodystrophy occupies a special place as a severe progressive genetic disorder characterized by rapid muscle weakening, irreversible loss of motor function and shortened life expectancy. However, despite the uniqueness of Duchenne myodystrophy, children with other neurological pathologies also face multiple barriers that affect their physical, emotional and social well-being. Comparing quality of life across different neurological conditions reveals both common problems (e. g., limited access to rehabilitation, stigmatization, psychological burden on families) and the specific challenges posed by each pathology. For children with Duchenne myodystrophy, the key challenges are progressive decline in physical abilities, emotional instability, and social isolation, whereas in other diseases, emotional lability, deficit of communication skills, and school maladjustment may come to the fore. Purpose of the study is to conduct a comparative analysis of the quality of life of children with Duchenne myodystrophy and children with other neurological diseases in the age groups of 5–7, 8–12 and 13–18 years, as well as to develop recommendations for improving medical care. Materials and methods. The study included 337 children aged 5 to 18 years who underwent inpatient examination in the pediatric neuropsychiatric department of the Federal State Budgetary Institution “Central Clinical Hospital with Polyclinic” of the UDP RF in the period from June to December 2024. The main group consisted of patients with Duchenne/Becker myodystrophy (n=145), and the control group consisted of children with other non-progressive neurologic diseases (n=192). The validated PedsQL™ 4.0 SF‑15 questionnaire and methods of descriptive statistics, comparison of mean values and Student’s t-test were used to assess quality of life. The analysis was performed taking into account the age division and four scales of functioning: physical, emotional, social and educational. Results. Children with Duchenne myodystrophy have a progressive decline in mobility, in contrast to consistently high scores in other neurological diseases, which can be improved by developing early rehabilitation to slow muscle atrophy and prevent complications Emotional difficulties in Duchenne myodystrophy increase in parallel with physical deterioration, whereas in other patients, stress peaks in the early school years. Children with Duchenne myodystrophy show high social adjustment, probably due to inclusive programs. However, by adolescence, involvement in school declines due to physical limitations. Findings. Children with Duchenne myodystrophy need a multidisciplinary approach combining physical rehabilitation, psychological care and adaptive education. For patients with other neurological pathologies, socialization (especially at the age of 8–12 years) and emotional support are priorities. A key limitation of the study is the use of the SF15 questionnaire only. For future work, it is advisable to add qualitative methods (interviews, observation).

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Publication Details

Journal
Manager Zdravookhranenia
Published
2025-08-27
DOI
https://doi.org/10.21045/1811-0185-2025-9-131-139
Primary Topic
Muscle Physiology and Disorders
Type
article
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article

Quality of life in children with Duchenne muscular dystrophy and other neurological disorders: age-related differences and strategies for optimizing healthcare.

Sergey V. Russkikh, G. E. Sakbaeva, A.A. Stepanov, I.Yu. Vdovenko et al.
Manager Zdravookhranenia
Muscle Physiology and Disorders
article

Quality of life in children with Duchenne muscular dystrophy and other neurological disorders: age-related differences and strategies for optimizing healthcare.

Sergey V. Russkikh, G. E. Sakbaeva, A.A. Stepanov, I.Yu. Vdovenko, Tatyana P. Vasilieva, T. A. Gremyakova
article en

Abstract

He quality of life of children with neurological diseases remains one of the most urgent and complex topics in modern medicine and social policy. Among these diseases, Duchenne myodystrophy occupies a special place as a severe progressive genetic disorder characterized by rapid muscle weakening, irreversible loss of motor function and shortened life expectancy. However, despite the uniqueness of Duchenne myodystrophy, children with other neurological pathologies also face multiple barriers that affect their physical, emotional and social well-being. Comparing quality of life across different neurological conditions reveals both common problems (e. g., limited access to rehabilitation, stigmatization, psychological burden on families) and the specific challenges posed by each pathology. For children with Duchenne myodystrophy, the key challenges are progressive decline in physical abilities, emotional instability, and social isolation, whereas in other diseases, emotional lability, deficit of communication skills, and school maladjustment may come to the fore. Purpose of the study is to conduct a comparative analysis of the quality of life of children with Duchenne myodystrophy and children with other neurological diseases in the age groups of 5–7, 8–12 and 13–18 years, as well as to develop recommendations for improving medical care. Materials and methods. The study included 337 children aged 5 to 18 years who underwent inpatient examination in the pediatric neuropsychiatric department of the Federal State Budgetary Institution “Central Clinical Hospital with Polyclinic” of the UDP RF in the period from June to December 2024. The main group consisted of patients with Duchenne/Becker myodystrophy (n=145), and the control group consisted of children with other non-progressive neurologic diseases (n=192). The validated PedsQL™ 4.0 SF‑15 questionnaire and methods of descriptive statistics, comparison of mean values and Student’s t-test were used to assess quality of life. The analysis was performed taking into account the age division and four scales of functioning: physical, emotional, social and educational. Results. Children with Duchenne myodystrophy have a progressive decline in mobility, in contrast to consistently high scores in other neurological diseases, which can be improved by developing early rehabilitation to slow muscle atrophy and prevent complications Emotional difficulties in Duchenne myodystrophy increase in parallel with physical deterioration, whereas in other patients, stress peaks in the early school years. Children with Duchenne myodystrophy show high social adjustment, probably due to inclusive programs. However, by adolescence, involvement in school declines due to physical limitations. Findings. Children with Duchenne myodystrophy need a multidisciplinary approach combining physical rehabilitation, psychological care and adaptive education. For patients with other neurological pathologies, socialization (especially at the age of 8–12 years) and emotional support are priorities. A key limitation of the study is the use of the SF15 questionnaire only. For future work, it is advisable to add qualitative methods (interviews, observation).

Manager Zdravookhranenia
Openalex Percentile: Top 80%
Muscle Physiology and Disorders
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