Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center

Çağatay Günay

doi:10.18614/dehm.1873614

Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center

Abstract

ABSTRACT BACKGROUND Although international care considerations for Duchenne muscular dystrophy (DMD) were revised in 2018, compliance in clinical practice remains unknown. The objective of this study was to investigate the parental compliance with care considerations in a tertiary hospital in Türkiye. METHODS A questionnaire was administered to parents of patients with DMD to assess compliance with recommended frequencies of visits to healthcare providers and clinical tests. The data collected from the questionnaires were analyzed using cross-tables to explore if there were differences between ambulant and non-ambulant patients. RESULTS Sixty-one participants completed the questionnaire, most of whom were parents of ambulant patients (n= 44, 72.1%). The majority of parents complied with the recommended frequency of cardiac assessments. However, suboptimal compliance was observed in the rest of the assessments, including the PPSV23 and influenza vaccination rates, which were notably low across all patient groups. Compliance with anthropometric assessments and the use of corticosteroids with proper posology was significantly higher in ambulant patients. Compliance with respiratory and orthopedic evaluations was significantly higher among non-ambulant patients. CONCLUSION This study showed several areas in which compliance is insufficient. To improve compliance, future work should focus on home-based assessments, educational programs for patients, parents, and physicians, as well as raising awareness about the importance and timing of recommended vaccinations

Keywords

References

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Details

Primary Language

English

Subjects

Clinical Sciences (Other)

Journal Section

Research Article

Authors

Çağatay Günay
0000-0001-7860-6297
Türkiye

Publication Date

January 28, 2026

Submission Date

February 11, 2025

Acceptance Date

September 18, 2025

Published in Issue

Year 2026 Volume: 40 Number: 1

DOI

https://doi.org/10.18614/dehm.1873614

IZ

https://izlik.org/JA76JY67DD

Cite

RIS / Bibtex

APA

Günay, Ç. (2026). Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center. Developments and Experiments in Health and Medicine, 40(1), 65-75. https://doi.org/10.18614/dehm.1873614

AMA

1.Günay Ç. Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center. Dev Exp Health Med. 2026;40(1):65-75. doi:10.18614/dehm.1873614

Chicago

Günay, Çağatay. 2026. “Compliance of Comprehensive Care in Children With Duchenne Muscular Dystrophy: Real-World Experience of a Pediatric Neuromuscular Diseases Center”. Developments and Experiments in Health and Medicine 40 (1): 65-75. https://doi.org/10.18614/dehm.1873614.

EndNote

Günay Ç (January 1, 2026) Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center. Developments and Experiments in Health and Medicine 40 1 65–75.

IEEE

[1]Ç. Günay, “Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center”, Dev Exp Health Med, vol. 40, no. 1, pp. 65–75, Jan. 2026, doi: 10.18614/dehm.1873614.

ISNAD

Günay, Çağatay. “Compliance of Comprehensive Care in Children With Duchenne Muscular Dystrophy: Real-World Experience of a Pediatric Neuromuscular Diseases Center”. Developments and Experiments in Health and Medicine 40/1 (January 1, 2026): 65-75. https://doi.org/10.18614/dehm.1873614.

JAMA

1.Günay Ç. Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center. Dev Exp Health Med. 2026;40:65–75.

MLA

Günay, Çağatay. “Compliance of Comprehensive Care in Children With Duchenne Muscular Dystrophy: Real-World Experience of a Pediatric Neuromuscular Diseases Center”. Developments and Experiments in Health and Medicine, vol. 40, no. 1, Jan. 2026, pp. 65-75, doi:10.18614/dehm.1873614.

Vancouver

1.Çağatay Günay. Compliance of comprehensive care in children with Duchenne muscular dystrophy: Real-world experience of a pediatric neuromuscular diseases center. Dev Exp Health Med. 2026 Jan. 1;40(1):65-7. doi:10.18614/dehm.1873614