Source: International Congress 2016 – Origins of infant pulmonary disease: early pointers for identifying infants at risk and ways to improve their care
Disease area: Paediatric lung diseases, Respiratory critical care

Abstract

Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support.Objectives: Our aim was to review palliative indication of home mechanical ventilation (HMV) in Southwestern Spain.Methods: Descriptive cross-sectional study including pediatric patients (aged 0 to 18 years) who were being taken care by the HMV program at the University Hospital Virgen del Rocio in Seville between 2000 and 2015.Results: A total of 78 patients were analyzed, 22 on invasive ventilation (10 with 24 hours/day) and 56 on no invasive ventilation. Duration of HMV varies from 2 days to 15 years. According to standards for pediatric palliative care in Europe, 12 patients suffered from life-threatening illness, (group 1; 4 cancer, 8 no progressive lung disease), 17 had conditions in which premature death is inevitable (group 2; 3 mucopolysaccharidosis, 14 malformative syndrome or chromosomopathy), 38 had progressive conditions without curative options (group 3; 30 neuromuscular diseases, 8 neurological progressive disease of unknown origin), 7 had irreversible but not progressive conditions (group 4; cerebral palsy). When HMV was started 17 patients had severe cognitive impairment, and HMV was indicated to improve quality of life by reducing hospital visits. During follow up, 3 patients died and 3 were weaned from HMV (group 1). Only 4 patients were included in a pediatric palliative care program.Conclusions: Up to 95% of patients with HMV can benefit from palliative care. HMV in children with chronic conditions aims to ameliorate their quality of life, but may pose ethical dilemmas.


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Mirella Gaboli (Seville, Spain), Mirella Gaboli, Isabel Delgado Pecellín, Marcos Madruga Garrido, Eduardo Quiroga Cantero, Carmen Cabrera Carro, Luis Manuel Reyes Rodriguez, Juan Pedro González Valencia. Mechanical ventilation in children with life-limiting conditions. Eur Respir J 2016; 48: Suppl. 60, 248

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