ArticleInternational journal of pediatric otorhinolaryngology2025
Shared Perspectives: Evaluating the impact of tracheostomy on quality of life through the voices of children and their parents.
Article in International journal of pediatric otorhinolaryngology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundThere 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.
methodsA 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.
resultsMean 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).
conclusionWe 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.
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