Targeting interventions to optimise school-age outcomes for children with hearing loss in a population with new-born screening

Research question What are the school-age health and education outcomes for children with hearing loss (HL) who experienced the NHS newborn hearing screening programme (NHSP); and how should this new knowledge effect improvements in intervention provision with a focus on neglected groups and sensitive periods of development? Background Around 2 in every 1000 UK children is diagnosed with HL, leading to problems with language, literacy and emotional wellbeing. While newborn screening has significantly decreased the age at hearing aid provision, 50% of children with HL have unilateral, progressive or late-detected types not targeted by newborn screening. Children with HL lag behind their classmates and evidence about school-age health impacts and inequalities is lacking. Aims/Objectives To identify and address outcomes for (1) a broader range of HL types, (2) inequalities, and (3) innovate novel linkage for monitoring school-age outcomes of the NHSP. Specific objectives are to: 1. Describe the population burden of HL and school-age health, neurodevelopment and education outcomes in children in England with/without HL who experienced NHSP, including changes over time. 2. Describe health/education outcomes for different HL trajectories (e.g. mild, fluctuating, progressive, unilateral, late-detected); identify trajectories and factors associated with adverse impact. 3. Establish differences in health/education outcomes for children with/without HL and identify what support optimises outcomes at school-age. 4. Assess whether implementing linkage to routine health/education records can monitor the success of the NHSP at improving outcomes, including addressing inequalities. Methods Three interlinked work packages (WPs) involving the following datasets: (a) Millennium Cohort Study: birth cohort of 19,000 children with linked hospital and education records; (b) linked newborn hearing screening and hospital records since 2006; (c) ECHILD dataset of linked routine health and education records for 20million children in England. WP1: Explore childhood HL trajectories (early/late-onset, progressive, fluctuating), their impacts on health and educational achievement at school-age and factors improving outcomes. WP2: Prevalence of HL identified by screening; healthcare usage, including by ethnicity, deprivation, mild/unilateral HL and treatment. WP3: Identify children with HL and compare school-age outcomes (e.g. comorbidities, healthcare usage, educational grades, special educational needs provision, absences) with children without HL. Timelines Months 1-2:recruit Research Associate, data familiarisation/structuring, advisory group meeting. Months 3-7: WP1 analysis, draft paper, advisory group meeting. Months 8-12: WP2 analysis, draft paper, advisory group meeting. Months 13-17: WP3 analysis, draft paper. Advisory group meeting to finalise policy recommendations, clinical guidelines and dissemination. Anticipated impacts (1) Improvements to newborn screening policy and programmes (1-2 years); (2) improved targeting/timing of existing interventions (1-2 years); (3) inform development of new interventions (≥3 years). Dissemination Different outputs (webpages, blogs, academic papers/presentations, public reports/webinars, policy briefs, clinical guidelines) will communicate information to key target audiences (parents, general public, NHSP, UK National Screening Committee, education/health professionals). All WPs will involve ongoing input from a parent and professional joint advisory group (involving health professionals, parents, teachers of the deaf, charity, support groups), which will be co-chaired by the study s PPI Lead (IN; National Deaf Children s Society). This group will drive changes to screening policy and clinical practice guidelines.