The Family Impact of Having a Child with a Tracheostomy

Abstract

Objectives: Measure the quality of life among families with children with tracheostomies. Methods: We performed a prospective cross-sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module-a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t-test. We determined the effect size of the difference between the two groups using the Cohen's d test. Results: Ninety-eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, "I worry about my child's future," mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, −26 to −4.8, P = .005, Cohen's d = −0.66). Conclusion: The presence of a tracheostomy is associated with QOL scores like other medically fragile children.

The Impact of Socioeconomic Disadvantage on Pediatric Tracheostomy Outcomes

“…Previous work concluded that families of children with tracheostomies have mean PedsQL scores similar to families with medically fragile children and lower than those with healthy children. 28 No study has looked at quality of life for families of children with tracheostomies based on community disadvantage. Inclusion of this secondary metric, focusing on family-reported impact, reflects a growing emphasis on quality when assessing health outcomes.…”

“…The program has previously published outcomes related to decannulation, mortality, and quality of life after tracheostomy placement. [26][27][28] Therefore, it is well-suited to examine socioeconomic effects on risk factors, hospital courses, and readmissions after tracheostomy placement.…”

Mortality Among Children with a Tracheostomy

“…This program at Children's Medical Center Dallas has previously published reports on perioperative outcomes, quality of life, and socioeconomic factors. 6,[13][14][15][16] It is therefore suited to analyze mortality events after tracheostomy. The primary objective of this study was to prospectively characterize mortality among tracheostomy-dependent children.…”

“…Children are prospectively enrolled in a registry at tracheostomy placement, allowing a multidisciplinary team of providers to manage patients and collect outcome metrics. This program at Children's Medical Center Dallas has previously published reports on perioperative outcomes, quality of life, and socioeconomic factors 6,13–16 . It is therefore suited to analyze mortality events after tracheostomy.…”

Incidence of Persistent Tracheocutaneous Fistula After Pediatric Tracheostomy Decannulation

“…The Children's Health Airway Management Program (CHAMP) prospectively follows children with tracheostomies and has previously published reports on perioperative outcomes, quality of life, and socioeconomic factors. [10][11][12][13][14] It is therefore suitable to study persistent tracheocutaneous fistulas.…”