title: Long-term home ventilation of children in Italy: a national survey.
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.
  
  
  OBJECTIVE
  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.
authors.affiliation: Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Racca
authors.forename: G
authors.initials: G
authors.lastname: Berta
authors.forename: M
authors.initials: M
authors.lastname: Sequi
authors.forename: E
authors.initials: E
authors.lastname: Bignamini
authors.forename: E
authors.initials: E
authors.lastname: Capello
authors.forename: R
authors.initials: R
authors.lastname: Cutrera
authors.forename: G
authors.initials: G
authors.lastname: Ottonello
authors.forename: V M
authors.initials: VM
authors.lastname: Ranieri
authors.forename: I
authors.initials: I
authors.lastname: Salvo
authors.forename: R
authors.initials: R
authors.lastname: Testa
authors.forename: A
authors.initials: A
authors.lastname: Wolfler
authors.forename: M
authors.initials: M
authors.lastname: Bonati
mesh_terms: D000293:Adolescent; D017677:Age Distribution; D002648:Child; D002675:Child, Preschool; D003710:Demography; D005260:Female; D006699:Home Care Services / Q000592:standards / Q000706:statistics & numerical data*; D006792:House Calls / Q000706:statistics & numerical data; D006801:Humans; D007558:Italy; D008297:Male; D008991:Monitoring, Physiologic; D010351:Patient Discharge / Q000706:statistics & numerical data; D012121:Respiration, Artificial / Q000592:standards / Q000706:statistics & numerical data*; D012131:Respiratory Insufficiency / Q000209:etiology / Q000628:therapy*; D011795:Surveys and Questionnaires; D013997:Time Factors