Long-term home ventilation of children in Italy: a national survey
1Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy.
Insights
This study characterizes Italian children requiring long-term home mechanical ventilation (HMV), finding significant variability in care needs and patterns across the country. National programs and registries are recommended to improve care for these critically ill children.
Area of Science:
- Pediatric Pulmonology
- Respiratory Medicine
- Healthcare Management
Background:
- Technological advancements and increased awareness allow more ventilator-dependent children to receive home care.
- The growing population of children on home mechanical ventilation (HMV) requires a comprehensive understanding of their profiles and care needs.
- Current home care quality and adequacy for these children necessitate thorough assessment.
Purpose of the Study:
- To characterize Italian children requiring long-term home mechanical ventilation (HMV).
- To identify patient demographics, diagnostic categories, and ventilation types in this population.
- To assess the involvement of healthcare professionals and parents in home care provision.
Main Methods:
- A nationwide questionnaire survey was distributed to 302 hospitals in Italy.
- Data collected included patient characteristics, ventilation methods, and home respiratory care details for children under 17.
- Prevalence, age, gender, diagnostic groups, and ventilation invasiveness were analyzed.
Main Results:
- 362 children on long-term HMV were identified, with a prevalence of 4.2 per 100,000.
- The median age was 8 years, with neuromuscular disorders being the most frequent diagnosis (49%).
- Invasive ventilation was used in 41% and associated with younger age, specific diagnoses, and regional factors. Parents were primary or sole caregivers in most cases.
Conclusions:
- Significant variability exists in the patterns of HMV across Italy, highlighting the need for standardized care.
- Assessment, planning, and resource allocation are crucial for the care of children on long-term HMV.
- Establishing a national ventilation program and registry is recommended to enhance care quality for these critically ill children.
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.
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