Shared Perspectives: Evaluating the impact of tracheostomy on quality of life through the voices of children and their parents.

BACKGROUND

There is a significant morbidity burden associated with tracheostomy in children as well as the physical, time, and financial burdens on their caregivers. We aimed to assess how living with a tracheostomy impacts the quality of life of patients and their caregivers compared to children without tracheostomy.

METHODS

A cross sectional study was conducted of children attending the outpatient otolaryngology clinic at a tertiary urban children's hospital. All parents completed the Pediatric Quality of Life Inventory™ (PedsQL) 4.0 and the PedsQL™ Family Impact Module questionnaires. Children 5 years of age and older completed the age group specific PedsQL™ 4.0 Child Report.

RESULTS

Mean scores for the Family Impact Module (FIM) were significantly lower in the tracheostomy group as compared to the controls (68.9 [SD 20] vs. 79.7 [SD 16], p = 0.004) representing more reported problems. The biggest differences in the parents' report on their children's quality of life were seen in the social functioning and cognition of the children (66.1 [SD 25.8] vs. 82.3 [SD 19.7], p < 0.001; and 58.0 [SD 27] vs. 72.2 [SD 23.5], p = 0.01, respectively). Additionally, parent reported scores for their children were highly correlated with their children's self-reports (R = 0.44, p = 0.002).

CONCLUSION

We describe a novel measurement among tracheostomy patients of children's self-reported quality of life. Physicians and care teams involved in caring for children living with tracheostomy should be aware of the wide-ranging impacts on the quality of life for the entire family and be prepared to offer appropriate resources.