Long-Term Ventilation at Home and Pediatric Palliative Care: Patients’ Characterization in an Italian Regional Survey

Rusalen, Francesca; Agosto, Caterina; Brugnaro, Luca; Benini, Franca

doi:10.4172/2165-7386.1000237

J Palliat Care Med

2015

DOI: 10.4172/2165-7386.1000237

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Long-Term Ventilation at Home and Pediatric Palliative Care: Patients’ Characterization in an Italian Regional Survey

Francesca Rusalen¹,

Caterina Agosto²,

Luca Brugnaro³

et al.

Abstract: Background: The prevalence of children receiving long-term mechanical ventilation at home (LTMV-H) is rising in many countries as advances in technology and medicine extend the survival of such patients. In Italy, the prevalence is 4.2 per 100,000 pediatric patients. It becomes essential to thoroughly assess these patients' needs, and of the quality and adequacy of their home care. Pediatric palliative care (PPC) may be an appropriate strategy for the global care and quality of life of children needing LTMV-H … Show more

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2024

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Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years

Toussaint,

van Hove,

Leduc

et al. 2024

Thorax

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BackgroundHome mechanical ventilation (HMV) is the treatment for chronic hypercapnic alveolar hypoventilation. The proportion and evolution of paediatric invasive (IMV) and non-invasive (NIV) HMV across the world is unknown, as well as the disorders and age of children using HMV.MethodsSearch of Medline/PubMed for publications of paediatric surveys on HMV from 2000 to 2023.ResultsData from 32 international reports, representing 8815 children (59% boys) using HMV, were analysed. A substantial number of children had neuromuscular disorders (NMD; 37%), followed by cardiorespiratory (Cardio-Resp; 16%), central nervous system (CNS; 16%), upper airway (UA; 13%), other disorders (Others; 10%), central hypoventilation (4%), thoracic (3%) and genetic/congenital disorders (Gen/Cong; 1%). Mean age±SD (range) at HMV initiation was 6.7±3.7 (0.5–14.7) years. Age distribution was bimodal, with two peaks around 1–2 and 14–15 years. The number and proportion of children using NIV was significantly greater than that of children using IMV (n=6362 vs 2453, p=0.03; 72% vs 28%, p=0.048), with wide variations among countries, studies and disorders. NIV was used preferentially in the preponderance of children affected by UA, Gen/Cong, Thoracic, NMD and Cardio-Resp disorders. Children with NMD still receiving primary invasive HMV were mainly type I spinal muscular atrophy (SMA). Mean age±SD at initiation of IMV and NIV was 3.3±3.3 and 8.2±4.4 years (p<0.01), respectively. The rate of children receiving additional daytime HMV was higher with IMV as compared with NIV (69% vs 10%, p<0.001). The evolution of paediatric HMV over the last two decades consists of a growing number of children using HMV, in parallel to an increasing use of NIV in recent years (2020–2023). There is no clear trend in the profile of children over time (age at HMV). However, an increasing number of patients requiring HMV were observed in the Gen/Cong, CNS and Others groups. Finally, the estimated prevalence of paediatric HMV was calculated at 7.4/100 000 children.ConclusionsPatients with NMD represent the largest group of children using HMV. NIV is increasingly favoured in recent years, but IMV is still a prevalent intervention in young children, particularly in countries indicating less experience with NIV.

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Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years

Toussaint,

van Hove,

Leduc

et al. 2024

Thorax

View full text Add to dashboard Cite

show abstract

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Long-Term Ventilation at Home and Pediatric Palliative Care: Patients’ Characterization in an Italian Regional Survey

Cited by 1 publication

References 34 publications

Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years

Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years

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