Abstract
BACKGROUND: Home mechanical ventilation improves survival of critically ill children but partially affects quality of life. Studies in China have more often analyzed the risk factors for death from prolonged mechanical ventilation in hospitalized children while less attention has been paid to children with home mechanical ventilation. This study aimed to describe the quality of life of children with home mechanical ventilation and the influencing factors. METHODS: It was a prospective cohort study. The cohort population was children undergoing prolonged mechanical ventilation in the Pediatric Intensive Care Unit, with the outcome of whether they were alive or dead at 1-year follow-up after discharge. Standardized scores for quality of life were calculated using TNO-AZL Children's Health-Related Quality of Life and TNO-AZL Preschool Children Quality of Life. Multiple linear regression was used to analyze the factors affecting the quality of life. RESULTS: A total of 106 children were included, and 11 children (10.38%) died within one year after discharge. The mean age was 8.26 ± 4.10 years, and the hospitalization days was 68.46 ± 34.23. Child self-care had a significant effect on the risk of death one year after discharge, with higher Barthel self-care scores associated with a lower risk of death. There was a statistically significant difference in quality-of-life scores between the non-home and home mechanical ventilation groups, whereas tracheotomy or not had no effect. 81.57% of the surviving children with home mechanical ventilation were placed on invasive mechanical ventilation, with a mean ventilation duration of 19.94 h/d and a pressure-controlled mode primarily. Home invasive mechanical ventilation, age, and Barthel self-care score were independent influences on children's quality of life scores. CONCLUSION: The long-term survival rate of children who transitioned to home mechanical ventilation in Shanghai, China, was higher than the international average. Most children were discharged to home invasive mechanical ventilation, decreasing their quality of life. It needs to continue standardizing the post-discharge management procedures and explore how to better transition to home non-invasive mechanical ventilation. It's necessary to describe the parents' quality of life with home mechanical ventilated children and its impact on child outcomes.