Long-term Home Ventilation of Children in Italy: a National Survey

Fabrizio Racca (1) , Giacomo Berta (1) , Marco Sequi (2) , Elisabetta Bignamini (3) , Elena Capello (1) , Renato Cutrera (4) , Giancarlo Ottonello (5) , Marco V Ranieri (1) , Ida Salvo (6) , Raffaele Testa (7) , Andrea Wolfler (6) , Maurizio Bonati (8)

1 Department of Anesthesiology and Intensive Care Medicine
2 Public Health
3 Pulmonology Unit
4 Respiratory Unit
5 Anesthesiology and Intensive Care Medicine Unit
6 Department of Anesthesiology and Intensive Care
7 Intensive Care Unit
8 Public Health

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 yrs). 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 give,r 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.

Mots clés: Medicine

Fabrizio Racca, Giacomo Berta, Marco Sequi, Elisabetta Bignamini, Elena Capello, et al.. Long-term Home Ventilation of Children in Italy: a National Survey. Pediatric Pulmonology, 2010, 46 (6), pp.566. ⟨10.1002/ppul.21401⟩. ⟨hal-00613787⟩