BACKGROUND: Improved technology, as well as professional and parental awareness, enable many ventilator-dependent children to live at home. However, the profile of this growing population, the quality and adequacy of home care, and patients' needs still require thorough assessment. OBJECTIVES: To define the characteristics of Italian children receiving long-term home mechanical ventilation (HMV) in Italy. METHODS: A detailed questionnaire was sent to 302 National Health Service hospitals potentially involved in the care of HVM in children (aged <17 years). Information was collected on patient characteristics, type of ventilation, and home respiratory care. RESULTS: A total of 362 HMV children was identified. The prevalence was 4.2 per 100,000 (95% CI: 3.8-4.6), median age was 8 years (interquartile range 4-14), median age at starting mechanical ventilation was 4 years (1-11), and 56% were male. The most frequent diagnostic categories were neuromuscular disorders (49%), lung and upper respiratory tract diseases (18%), hypoxic (ischemic) encephalopathy (13%), and abnormal ventilation control (12%). Medical professionals with nurses (for 62% of children) and physiotherapists (20%) participated in the patients' discharge from hospital, though parents were the primary care giver, and in 47% of cases, the sole care giver. Invasive ventilation was used in 41% and was significantly related to young age, southern regional residence, longer time spent under mechanical ventilation, neuromuscular disorders, or hypoxic (ischemic) encephalopathy. CONCLUSIONS: Care and technical assistance of long-term HMV children need assessment, planning, and resources. A wide variability in pattern of HMV was found throughout Italy. An Italian national ventilation program, as well as a national registry, could be useful in improving the care of these often critically ill children.

Long-term home ventilation of children in Italy: A national survey

RACCA, FEDERICO;CAPELLO, ELENA;RANIERI, Vito Marco;BERTA, GIACOMO;DEL SORBO, Lorenzo;
2011

Abstract

BACKGROUND: Improved technology, as well as professional and parental awareness, enable many ventilator-dependent children to live at home. However, the profile of this growing population, the quality and adequacy of home care, and patients' needs still require thorough assessment. OBJECTIVES: To define the characteristics of Italian children receiving long-term home mechanical ventilation (HMV) in Italy. METHODS: A detailed questionnaire was sent to 302 National Health Service hospitals potentially involved in the care of HVM in children (aged <17 years). Information was collected on patient characteristics, type of ventilation, and home respiratory care. RESULTS: A total of 362 HMV children was identified. The prevalence was 4.2 per 100,000 (95% CI: 3.8-4.6), median age was 8 years (interquartile range 4-14), median age at starting mechanical ventilation was 4 years (1-11), and 56% were male. The most frequent diagnostic categories were neuromuscular disorders (49%), lung and upper respiratory tract diseases (18%), hypoxic (ischemic) encephalopathy (13%), and abnormal ventilation control (12%). Medical professionals with nurses (for 62% of children) and physiotherapists (20%) participated in the patients' discharge from hospital, though parents were the primary care giver, and in 47% of cases, the sole care giver. Invasive ventilation was used in 41% and was significantly related to young age, southern regional residence, longer time spent under mechanical ventilation, neuromuscular disorders, or hypoxic (ischemic) encephalopathy. CONCLUSIONS: Care and technical assistance of long-term HMV children need assessment, planning, and resources. A wide variability in pattern of HMV was found throughout Italy. An Italian national ventilation program, as well as a national registry, could be useful in improving the care of these often critically ill children.
PEDIATRIC PULMONOLOGY
46
566
572
Racca F; Berta G; Sequi M; Bignamini E; Capello E; Cutrera R; Ottonello G; Ranieri VM; Salvo I; Testa R; Wolfler A; Bonati M; Anna Costantino; Raffaella Pagni; Anna Maria Miorelli; Paolo Castaldi; Mariano Cabras; Bruno Dengo; Augusto Biasini; Francesco Morandi; Carlo Minetti; Giancarlo Ottonello; Paolo Banfi; Maurizio Bonati; Edoardo Calderini; Edi Prandi; Ida Salvo; Marco Sequi; Andrea Wolfler; Marco Zucconi; Giuseppe Fiorentino; Antonio Maddalena; Raffaele Testa; Grazia Crescimanno; Anna Guddo; Livio Carnevale; Andrea Vianello; Giancarlo Piccinini; Valter Bottari; Maurizio Corbari; Renato Cutrera; Martino Pavone; Giacomo Berta; Elisabetta Bignamini; Elena Capello; Lorenzo Del Sorbo; Cesare Gregoretti; Maria Maspoli; Fabrizio Racca; Marco V. Ranieri; Antonio Peratoner; Monica Benedetti
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Utilizza questo identificativo per citare o creare un link a questo documento: http://hdl.handle.net/2318/110631
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