ArticlePediatric pulmonology2019
Understanding adherence to noninvasive ventilation in youth with Duchenne muscular dystrophy.
Article in Pediatric pulmonology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 29 citations in OpenAlex.
- Paediatric Long-Term Home Respiratory Support: Recommendations of the Swiss Society of Paediatric Pulmonology.Respiration; international review of thoracic diseases · 2026Guideline
- Patterns of Adherence to Lung Volume Recruitment Therapy Amongst Individuals With Duchenne Muscular Dystrophy: A Secondary Analysis of the STEADFAST Randomized Controlled Trial.Pediatric pulmonology · 2025Trial
- A novel age-based physiological definition of adherence to pediatric long-term non-invasive ventilation: an exploratory study.Sleep & breathing = Schlaf & Atmung · 2026Article
- Screening for brain-related comorbidities in Duchenne muscular dystrophy: Construction, reliability, and validity of the BIND screener.Developmental medicine and child neurology · 2026Observational
- Improving Nocturnal Non-Invasive Positive Pressure Support Adherence in Children and Young Adults With Duchenne Muscular Dystrophy.Pediatric pulmonology · 2026Article
- An underestimated factor for therapeutic decision-making in rare diseases: parents' (un)knowledge-the example of Duchenne muscular dystrophy caregivers and non-invasive ventilation.Orphanet journal of rare diseases · 2025Article
- Psychological aspects in neuromuscular patients: case series.Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology · 2025Article
- Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum disorder and ADHD.Frontiers in pediatrics · 2025Article
- Improved diagnostic performance of high-sensitivity cardiac troponins in muscle dystrophies using comprehensive definition criteria for cardiac involvement: A longitudinal study on 35 patients.European journal of neurology · 2024Article
- Interpretation of elevated baseline concentrations and serial changes of high-sensitivity cardiac troponin T in confirmed muscular dystrophies.ESC heart failure · 2024Article
- Indications and techniques of non-invasive ventilation (NIV) in neuromuscular diseases.Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology · 2024Review
- The experience of children using long-term non-invasive ventilation: a qualitative study.Frontiers in sleep · 2024Article
- Psychological Factors Influencing Adherence to NIV in Neuromuscular Patients Dependent on Non Invasive Mechanical Ventilation: Preliminary Results.Journal of clinical medicine · 2023Article
- Comparison of non-invasive ventilation use and outcomes in children with Down syndrome and other children using this technology.Frontiers in sleep · 2023Article
- Characterization of sleep-disordered breathing in children with Duchenne muscular dystrophy by the American Academy of Sleep Medicine criteria vs disease-specific criteria: what are the differences?Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2022Article
- ATS Core Curriculum 2020. Pediatric Pulmonary Medicine.ATS scholar · 2020Article
- Non-invasive Ventilation for Children With Chronic Lung Disease.Frontiers in pediatrics · 2020Review
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
Duchenne muscular dystrophy (DMD) is an X-linked, progressive neuromuscular disorder that results in chronic respiratory insufficiency and subsequently failure requiring noninvasive ventilation (NIV). Adherence to NIV in neuromuscular disorders and related barriers are poorly described. The aim of the current study was to assess NIV adherence, adherence barriers, and identify psychosocial predictors of adherence in young boys with early DMD-related sleep disordered breathing and recommended nocturnal NIV. This cross-sectional study included 42 youth with DMD with prescribed nocturnal NIV, and their caregivers. Caregivers and youth completed questionnaires assessing adherence barriers, psychosocial symptoms (eg, anxiety and depressive symptoms), and stress. Medical information pertinent to cardiopulmonary health and neurologic status at both enrollment and initiation of NIV was reviewed. Adherence to NIV, defined as percent days used and days used ≥4 hours/day was 56.1 ± 38.7% and 46.2 ± 40.6%, respectively. Average duration of use on days worn was 5.61 ± 4.23 hours. NIV usage was correlated with the severity of obstructive sleep apnea but not cardiopulmonary variables. Mask discomfort was the most commonly reported adherence barrier followed by behavioral barriers (eg, refusing to use). Multiple regression analyses revealed that internalizing behaviors (eg, anxiety and depressive symptoms) and total adherence barriers significantly predicted NIV adherence. Adherence to NIV in DMD is poor and similar to other pediatric chronic diseases. Our data suggest interventions targeting adherence barriers and patient internalizing symptoms may improve adherence to NIV in DMD.
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