Parent-reported experiences of in-laboratory polysomnography in children with neurodevelopmental disorders: A cross-sectional multi-centre study

Abstract

PURPOSE: In-laboratory polysomnography (PSG) is the gold standard test for diagnosing certain paediatric sleep conditions. Children with neurodevelopmental disorders (NDD) often have difficulty tolerating PSG, but parent and patient experiences of PSG for children with NDD have not been thoroughly explored. The study aim was to evaluate the parent-reported experience of in-laboratory PSG undertaken in children with NDD and to identify factors predictive of poorer experience. METHODS: In this cross-sectional multicentre study, parents of 143 children with NDD who underwent in-laboratory PSG completed a customised survey to provide feedback on parent and child worry levels, subjective tolerance and overall experience of PSG, and hypothetical preference between in-laboratory PSG versus an in-home mat-based sleep test. ANOVA, Chi-squared and Kruskal-Wallis tests were used to determine participant factors associated with these outcomes. RESULTS: On average, parents rated their child's worry level with respect to undergoing PSG as 'moderate,' but their own worry levels lower. Autism spectrum / neuromuscular disorder diagnoses were risk factors for both higher worry score and reporting that sleep during PSG was non-representative of usual sleep at home. Parental preference was for in-home (mat-based) testing, with 57% indicating a preference for this if it wereavailable vs. 7% preferring in-laboratory testing. CONCLUSION: Parent/carer reports regarding in-laboratory PSG experiences for their children with NDD suggest the test is associated with child worry and concerns that the sleep is not-representative of usual sleep at home. Consumer preference favours in-home sleep study testing over current in-laboratory diagnostic testing. CLINICAL TRIAL REGISTRATION: This study is part of a larger trial ACTRN12622001544763.