The Queensland paediatric tracheostomy quality of life study

Abstract

Background: Currently, there is no Australian data on the quality of life (QOL) of families who care for a child with a tracheostomy. However, overseas studies to date point to a significant issue. The aim of this study was to describe the QOL of Australian families and/or carers of children with a tracheostomy. Methods: A prospective study was undertaken utilising two questionnaires, the “PedsQLTM Family Impact Module Version 2.0” and a second questionnaire on access to respite and psychology services. All families of children (inpatient and outpatient) currently living with a tracheostomy and receiving care with the Department of Otolaryngology at the Queensland Children’s Hospital (QCH) were invited to participate during July 2023. Scores were compared to previous cohorts of children with tracheostomy from overseas as well as medically fragile children. Statistical comparison of the PedsQLTM Family Impact Module Version 2.0 mean summary and domain scores was performed for significant differences. Results: Eighteen out of 42 (43%) families returned QOL data. Seventeen out of 18 (94%) respondents reported access to the National Disability Insurance Scheme (NDIS). Seven out of 18 (39%) families reported access to respite (median 10 hours/week). Five out of 18 (28%) respondents reported access to a psychologist. From the PedsQLTM Family Impact Module Version 2.0 survey, the mean total family impact score was 44±20 (range, 14–90). The lowest mean domain score was family daily activities 25±29. The lowest mean individual question score was 18±27 regarding problems with family activities. When comparing the mean PedsQLTM Family Impact Module Version 2.0 score to a group of medically fragile children in outpatient care (44 vs. 63), in residential care (44 vs. 81) and groups of children with tracheostomy from overseas, the Australian cohort scored worse in all instances (P<0.001). Conclusions: This is the first study to publish Australian data regarding paediatric tracheostomy QOL. Within our cohort, the majority had NDIS access and reported respite to be useful. A minority had accessed a psychologist. The Australian cohort returned QOL scores worse than other medically fragile children and other children with a tracheostomy from overseas.