Who misses the newborn hearing screening? Five years’ experience in Friuli-Venezia Giulia Region (Italy)

Abstract Introduction Permanent hearing impairment is the most common sensory disorder in newborns. The Universal Newborn Hearing Screening (UNHS) is widely adopted as a cost-effective procedure to achieve early identification and treatment of congenital hearing impairment, with the final goal of an improved linguistic and cognitive outcome for hearing impaired children. The Italian Ministry of Health has recently comprised UNHS in the Essential Level of Health Assistance. Nevertheless, programs still vary both across and within Italian Regions in terms of coverage, testing, referral and tracking protocols. In Friuli-Venezia Giulia region the program for the early identification of newborn and childhood hearing impairment is operative since 2012. In order to minimize the lost to follow-up cases, UNHS and childhood hearing surveillance activities have been organized in close collaboration among birth centres, paediatric audiology services, territorial Family Paediatricians and the sole regional centre for paediatric hearing loss management. Material and methods We performed a five years’ retrospective analysis of the UNHS experience in Friuli-Venezia Giulia comparing the UNHS activity of year 2013 and year 2017. The focus of the study concerns the “missing” cases. Three different typologies of “miss” cases (“documentation-miss”, “access-miss” and “pathway-miss”) have been defined in correspondence with main reasons for their occurrence. Results Births in Friuli-Venezia Giulia were 9465 and 8432, respectively in 2013 and 2017. International quality indicators improved with a gain of efficiency in 5 years’ experience. However, “missing” cases were 486 in 2013 and 321 in 2017, mainly due to the lack of an efficient documentation system. Conclusion UNHS programs have proven to be valuable and cost-effective in Friuli-Venezia Giulia and other Italian regions. New resources and efforts are required to achieve a complete standardization and informatisation of the UNHS data to avoid documentation gaps. A possible strategy would point to the opportunity to unify data management systems for all the ongoing newborn screening programs (metabolic, hearing and visual), linking the integrated IT system with the regional repository of current datasets.