Evaluation of a Screening Program: Challenges of Data Collection Using the Example of the Newborn Hearing Screening

Background The aim of the newborn hearing screening (NHS) is to identify and treat children with bilateral hearing disorders early. The NHS is regulated in Germany by the Pediatric Directive, which recommends an evaluation after 5 years. This evaluation was performed for the first time nationwide for children born between 2011 and 2012 regarding structural, process and result quality. Objectives Challenges in the collection of appropriate data as basis for evaluation are described and possible improvements are suggested. Methods All maternity and neonatology wards performing the NHS were identified and their documentations of the NHS analysed. In addition, all pediatric audiologists were identified to gather data on children with bilateral permanent congenital hearing disorder. Results The identification of relevant maternity and neonatology wards was very burdensome. More than half of them were not aware that NHS had to be documented. There was no documentation on more than 15% of the children that were to be screened. Furthermore, data concerning bilateral congenital hearing disorders was only accessible for 60% of the expected number of affected children. Conclusions Data required for the evaluation of the NHS regarding structural, process and result quality were incomplete and missing. The database for evaluations should be defined precisely and structures needed to obtain meaningful results have to be established in advance. Nevertheless, the evaluation of the NHS provides meaningful results concerning the screening process in Germany.