Validation of Child-Reported Quality of Life Instrument in Children with Sleep Apnea

Author: Christiana King
Program: Medicine
Mentor(s): Cristina Baldassari, MD, FAAP, FACS
Poster #: 142
Session/Time: B/3:40 p.m.

Abstract

Introduction:

Obstructive sleep apnea (OSA) is a sleep-related breathing disorder characterized by episodes of upper airway collapse. It has been increasingly acknowledged that children with OSA may experience negative impacts on their quality of life (QOL) including behavioral problems, poor attention, cognitive deficits, and impaired family interactions. The gold standard for diagnosis of OSA is in-laboratory nocturnal polysomnography (PSG). PSG measures the presence of OSA and provides an objective scale for OSA severity. However, PSG fails to quantify the impact of OSA on a child's general well-being. Thus, QOL instruments such as the OSA-18 are increasingly being used to assess symptom burden in children. Currently, all disease-specific QOL surveys for pediatric OSA patients are designed for caregiver completion. An instrument to assess the child's perception of OSA impact on their QOL is currently lacking. Prior research in other chronic pediatric medical conditions has demonstrated a lack of correlation between caregiver- and child-reported QOL. Thus, our primary objective will be to develop and validate a child-reported, disease-specific QOL survey.

Methods:

Children aged 5 to 16 years presenting to pediatric otolaryngology clinics for OSA evaluation are enrolled in concordance with the IRB-approved protocol. At baseline, children complete a modified OSA-18 that was developed during a focus group, while parents/caregivers complete the previously validated, standard OSA-18 survey and the Sleep Related Breathing Disorder section of Pediatric Sleep Questionnaire (PSQ-SRBD). The child-reported OSA-18 is readministered 7 days following baseline via telephone call, email, text messaging, or secure Zoom encounter.

Results:

There are currently 85 subjects enrolled with a mean age of 8 years and an obesity prevalence of 48.2%. At baseline, 23.5% had total caregiver OSA-18 and child-reported OSA-18 scores within the same severity category. A subset of 30 subjects have completed the 7-day follow-up child-reported OSA-18. Of those, 66.7% had total survey scores within the same severity category between baseline and follow-up for OSA impact on QOL.

Conclusion:

When validated, the child-reported OSA-18 survey will enable determination of symptom burden experienced by children and adolescents. This may be a valuable tool for future guidance of management decisions for children and adolescents with OSA.