Early hearing outcomes of children born with an orofacial cleft in England: an observational study linking two national datasets

Objective To link two national datasets to report outcomes of the newborn hearing screen and hearing loss prevalence at first audiology assessment for English newborns with an orofacial cleft. Design An observational study using national data from the Cleft Registry and Audit Network (CRANE) Database and the Newborn Hearing Screening Programme (NHSP). Setting National Health Service England. Patients English children born with an orofacial cleft, 1 March 2006–31 December 2021 with consent to data linkage. Outcome measure Hearing status at newborn screen and outcome of first audiology assessment are reported. Linkage rates were assessed according to patient characteristics. Χ2 tests were used to compare percentages between subgroups. Results 11 888/12 438 (96%) children in CRANE were linked to their NHSP record. Linkage rate varied significantly according to patient characteristics. Overall, 75% of children had a clear response in both ears on their newborn screen. 72% of children with a cleft involving the palate were referred appropriately for audiological assessment. Using the newborn screen and first audiology assessment, one in five children with an orofacial cleft had a hearing loss. Children with any cleft involving the palate or with a diagnosed syndrome were more likely to have a hearing loss. Conclusions Through linkage of two national databases, we were able to characterise hearing loss prevalence among children born with an orofacial cleft in England. Further work is needed to determine why some children were not appropriately targeted for audiological assessment and explore the impact on speech, language and educational attainment.