Educational Objective: At the conclusion of this presentation, the participants should be able to recognize how pediatric tracheostomy impacts the family's quality of life.
Objectives: To study the longitudinal effects of pediatric tracheostomy impact on the family's quality of life.
Study Design: Cross-sectional analysis.
Methods: We performed a longitudinal analysis of QOL of families with children with tracheostomies using the PedsQL Family Impact module - a validated QOL instrument. The family's mean PedsQL scores were compared between index hospitalization, chronic tracheostomy children, and changes over time using mixed effect multiple linear regression. We compared changes in PedsQL score by demographics, indications for tracheostomy, neurocognitive disability, and the child's current status. We further compared these scores to healthy children.
Results: N=255 surveys were collected from 2018-2021. N=62 (26%) were from families at the time of tracheostomy placement. Eighty-two families (32%) filled out multiple surveys. Acute survey children were younger (3.6y vs. 6.9y), non-Hispanic (N=54, 82% vs. 68%), and not severely neurocognitively disabled (52% vs. 74%) when compared to chronic tracheostomy families (all P < .01). The mean total QOL impact score was 78.9 (SD=13.5). These scores were lower than families with healthy children (n=717, mean (SD) = 87.61 (12.33), 95% CI for difference = -10.52 to -6.82 ). QoL scores did not change over time except for improved emotional functioning (mean difference = 6.07, P=.01, 95% CI = 0.72 - 11.42). After controlling for time since tracheostomy both complex patient type (B=-4.06, P=.03, 95% CI= -7.81 to -0.31) and male sex (B=-3.86, P=.04, 95% CI= -7.58 to -0.14) affected QOL. Also, families where the child eventually died reported better QOL scores (B=5.89, P=.02, 95% CI=1.00 to 10.78).
Conclusions:Family QOL remains stable over time for those with tracheostomy dependent children while remaining lower than families of healthy children.