ArticleHealth and quality of life outcomes2020
The impact of long-term ventilator-use on health-related quality of life and the mental health of children with neuromuscular diseases and their families: need for a revised perspective?
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed.
- Methodological and clinical considerations for polysomnographic criteria guiding non-invasive ventilation initiation in pediatric neuromuscular diseases.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2026Article
- Caregivers' outcome prioritization for home positive airway pressure in children: a mixed-methods study.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025Article
- Highlights from the Respiratory Failure and Mechanical Ventilation Conference 2024.Breathe (Sheffield, England) · 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
- Predictors of overload in parents of children with neuromuscular diseases.Frontiers in neurology · 2024Article
- Psychological Factors Influencing Adherence to NIV in Neuromuscular Patients Dependent on Non Invasive Mechanical Ventilation: Preliminary Results.Journal of clinical medicine · 2023Article
- Home mechanical ventilation in children with chronic respiratory failure: a narrative review.Journal of Yeungnam medical science · 2023Article
- Article
- The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study.International journal of environmental research and public health · 2022Article
- The Influence of Disney Musical Practice Course on the Mental Health of Chinese Left-Behind Children from the Perspective of Art Communication.Occupational therapy international · 2022Article
- Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation.International journal of environmental research and public health · 2020Article
- Review
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Authors and funding
6 authors.
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Abstract
backgroundLife extension by medical interventions and health-related quality of life (HRQOL) are sometimes conflicting aspects of medical care. Long-term ventilation in children with neuromuscular disease is a well-established life-extending procedure and often at the center of this conflict. HRQOL and the mental health of affected children and their families become even more important in respect to emerging therapies in neuromuscular diseases with longer life-expectancy of treated patients and considerable costs of medical treatment.
methodsWe performed a questionnaire survey in a total of forty-three families of children with neuromuscular disease treated in the University Medical Center Hamburg-Eppendorf and the Children's Hospital Altona. We evaluated self- and proxy-reported HRQOL and mental health outcomes of affected children and their parents using validated and age-appropriate instruments.
resultsCompared to normative data, children with neuromuscular diseases and their families experienced a lower HRQOL and mental health. However, there was no additional negative influence on the overall HRQOL by ventilator use.
conclusionsAs ventilator use was not responsible for the reduction of HRQOL and mental health our data contributes an important aspect to the discussion about life-prolonging procedures, in particular mechanical ventilation, in severly disabled patients.
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