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                <title xml:lang="en">Long-term Home Ventilation of Children in Italy: a National Survey</title>
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                <title level="j">Pediatric Pulmonology</title>
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              <p>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 &lt; 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.</p>
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              <country key="FR"/>
            </address>
          </desc>
        </org>
        <org type="institution" xml:id="struct-341556" status="INCOMING">
          <orgName>Santobono Hospital</orgName>
          <desc>
            <address>
              <country key="FR"/>
            </address>
          </desc>
        </org>
      </listOrg>
    </back>
  </text>
</TEI>