ArticleEuropean journal of pediatrics2017
Quality of life in home-ventilated children and their families.
Article in European journal of pediatrics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
What it found
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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
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Outcomes of children and young people with cerebral palsy receiving long-term respiratory support: A systematic review.Developmental medicine and child neurology · 2026Pooled it
- Community-based pediatric palliative care: a systematic review of structures, processes, and outcomes.Jornal de pediatriaPooled it
- 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
- Quality of life among children and young adults with rare diseases. A parental perspective.European journal of pediatrics · 2025Article
- Analysis of factors affecting long-term quality of life in children on home mechanical ventilation: a 4-year prospective observational cohort study.Italian journal of pediatrics · 2025Observational
- Congenital Central Hypoventilation Syndrome (CCHS): Patient Quality of Life and Caregiver Burden.Pediatric pulmonology · 2025Article
- Efficacy of home healthcare on the management of tracheostomy patients.Saudi medical journal · 2024Article
- Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role.Indian journal of critical care medicine : peer-reviewed, official publication of Indian Society of Critical Care Medicine · 2024Article
- Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation.PEC innovation · 2023Article
- Back Transfer of Infants with Tracheostomies: A Regional Center Experience.Journal of pediatric intensive care · 2023Article
- Home mechanical ventilation in children with chronic respiratory failure: a narrative review.Journal of Yeungnam medical science · 2023Article
- Diaphragm pacing and independent breathing in individuals with severe Pompe disease.Frontiers in rehabilitation sciences · 2023Article
- 'I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child.Health & social care in the community · 2022Article
- Article
- INCEPTUS Natural History, Run-in Study for Gene Replacement Clinical Trial in X-Linked Myotubular Myopathy.Journal of neuromuscular diseases · 2022Article
- Living as a family with a child on home mechanical ventilation and personal care assistants-A burdensome impact on family life.Nursing open · 2021Article
- Ventilatory support at home for children: A joint position paper from the Thoracic Society of Australia and New Zealand/Australasian Sleep Association.Respirology (Carlton, Vic.) · 2021Review
- How Do you Focus on Quality of Life When Kids Cannot Go to School or Outside?Current pediatrics reports · 2021Review
- Depression and anxiety in mothers of home ventilated children before and during COVID-19 pandemic.Pediatric pulmonology · 2021Article
- 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?Health and quality of life outcomes · 2020Article
Corrections and comments
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Authors and funding
22 authors.
Funding
Abstract
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively.
conclusionsPerceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
Indexed as
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.