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

Abstract

BackgroundImproved 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.ObjectivesTo define the characteristics of Italian children receiving long‐term home mechanical ventilation (HMV) in Italy.MethodsA 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.ResultsA 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.ConclusionsCare 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. Pediatr. Pulmonol. 2011; 46:566–572. © 2011 Wiley‐Liss, Inc.

The Chronically Critically Ill Patient: Pediatric Considerations

“…Racca et al 30 described 362 pediatric patients requiring chronic ventilatory support. Of these infants and children, 41% were invasively ventilated, while the remaining 59% were managed with noninvasive respiratory support.…”

Rehabilitation Considerations for Children Dependent on Long-Term Mechanical Ventilation

“…When medically stable on a ventilator suitable for nonhospital use and with appropriate caregiver support, children dependent on MV can be cared for at home and participate in community activities [9,11,23,39,40,52,53]. This option is dependent on many factors, but primarily on a stable airway, an oxygen requirement typically less than 40%, a PaCO 2 level not more than 10% above baseline, as well as an adequate nutritional intake to maintain growth and development [12].…”

“…The causes of chronic respiratory insufficiency in children have been grouped into the following categories: conditions which affect the lungs, lung parenchyma, and airway (e.g., bronchopulmonary dysplasia, tracheobronchomalacia); conditions which cause central dysregulation of breathing (e.g., ischemic encephalopathy, traumatic brain injury); and diseases or disorders of the chest wall and thorax, which affect the "respiratory pump" (e.g., spinal muscular atrophy, scoliosis) [9,[12][13][14][15][16]. Additionally, there may be combinations of the aforementioned conditions such as in genetic disorders that have associated pulmonary manifestations [17].…”

“…Additionally, advances in medical technology are allowing children to live in to adulthood and the increasing use of portable ventilators is allowing children to be managed at home and in their communities [1][2][3][4][5]. While children dependent on long-term MV remain a small percentage of the overall group of children requiring rehabilitation services, studies indicate that this group of children continues to grow around the world [3,[6][7][8][9][10][11].…”

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

“…In many countries the last two decades have seen a gradual increase in the prevalence of pediatric patients on long-term mechanical ventilation at home (LTMV-H) [1][2][3][4][5][6][7][8][9][10][11][12] as a result of advances in medicine and technology affording these children a longer survival [1][2][3][4][7][8][9]11,12]. This has given rise to a new pediatric population represented by young patients on LTMV-H, be it invasive (IMV) or non-invasive (NIV), that has been growing more rapidly in the last few years, especially the latter subgroup [4,13].…”