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Establishment of the Norwegian hearing register for children
Tone Stokkereit Mattsson1, Ann Helen Nilsen1, Siri Wennberg1
1Department of Medical Quality Registries, St. Olav's University Hospital, Trondheim, Norway.
Insights
The Norwegian Hearing Register for Children aims to enhance care for pediatric hearing loss. It monitors treatment quality and outcomes, enabling real-time comparisons for continuous improvement in diagnostics and intervention.
Area of Science:
- Pediatric Audiology
- Public Health Surveillance
- Healthcare Quality Improvement
Background:
- Permanent hearing loss affects children, necessitating specialized care and monitoring.
- The Norwegian Directorate of Health established the Norwegian Hearing Register for Children in 2022.
- Improving the quality of healthcare for children with hearing loss is a key public health objective.
Purpose of the Study:
- To establish a national registry for children with permanent hearing loss.
- To monitor and improve the quality of audiological care and interventions for children.
- To facilitate research on pediatric hearing loss through comprehensive data collection.
Main Methods:
- Inclusion criteria: children <18 years with permanent hearing loss (PTA4 > 20 dB HL) or failing newborn hearing screening.
- Data collection includes newborn screening, audiological assessments, medical history, interventions, and patient-reported outcomes.
- Follow-up data collected at ages 3, 6, 10, and 15 years.
Main Results:
- The register tracks four key quality indicators for newborn hearing screening and early intervention.
- These indicators include false positive rates, congenital cytomegalovirus testing, audiological evaluation timeliness, and intervention initiation.
- Hospitals can monitor their performance against national benchmarks in real-time.
Conclusions:
- The register provides a comprehensive dataset for monitoring and improving pediatric hearing healthcare in Norway.
- Continuous quality monitoring and comparison facilitate rapid identification of areas for improvement.
- The registry serves as a valuable resource for research on long-term outcomes of pediatric hearing loss.
Introduction:
The Norwegian Directorate of Health approved the Norwegian Hearing Register for Children in 2022. The main objective of the register is to improve the quality of treatment for children with permanent hearing loss, by measures, follow-ups and monitoring the quality and results of the health care system.
Methods:
Inclusion criteria are children who do not pass universal newborn hearing screening and/or children with permanent hearing loss <18 years of age. Hearing loss is defined as pure-tone audiometry threshold of (PTA4) > 20 dB in at least one ear. Data are registered at the Ear, Nose and Throat departments at inclusion and at follow-ups at the age of 3, 6, 10, and 15 years. The register collects information about the child within a holistic perspective. The key elements of the register are (a) data concerning newborn hearing screening; (b) data concerning hearing, medical information, hearing amplification and intervention (c) patient reported outcome measures registered by caregivers using three questionnaires; Pediatric Quality of Life Inventory, Strengths and Difficulties Questionnaire and Parents' Evaluation of Aural/Oral Performance of Children.
Results:
The register has established four quality indicators regarding newborn hearing screening and early intervention (a) the rate of false positive neonatal screens; (b) testing for congenital cytomegalovirus within 3 weeks of age for children who do not pass newborn hearing screening; (c) audiological evaluation to confirm the hearing status no later than 3 months of age and (d) initiated intervention within 3 months after confirmation of hearing status.
Discussion:
The register will include the total population of hearing impaired children over long time periods. Thus, the register enables each hospital to monitor their quality indicator scores continuously and compare them with national levels in real time. This facilitates and accelerates identification of improvement areas in the hospitals and will be an important contributor for quality improvement in NHS, diagnostics and hearing intervention for children in Norway. In addition, data from the register will be a unique source for research, and study designs with a long follow-up time can be applied.
