Overview
Understanding and addressing childhood visual disability is now a major concern throughout the world. This is both because of a lack of treatments available and because of the high and lifelong impact on the people directly affected, as well as their families and the societies they live in.
For most of these children, we don’t know what if anything makes them more at risk of sight loss, or the mechanics behind their condition. This makes preventing sight loss difficult.
There are some exciting developments in specific treatments for some disorders. For example, cooling the brain or body for some types of oxygen starvation at birth, or gene and stem cell therapies for some conditions affecting the retina. But on the whole, there aren’t many opportunities for good treatment.
All clinical services and public health programmes and policies that address childhood visual disability need good, up-to-date evidence. In the UK, this information is unavailable from either previous studies or existing ‘routine’ data sources. So in this study the research team is aiming to provide this evidence by doing a thorough study of visual disability in childhood.
This will be the first national study to find out how many children are born or become visually impaired each year, how they are detected, any risk factors, and what care they receive. The team will also study the short term health and social effects.-
Scientific summary
This is the first national study to determine the incidence, causes, mode/context of detection, determinants/risk factors, management and short term health and social outcomes of all-cause visual disability in childhood. This information is unavailable through either prior studies or existing ‘routine’ (health or administrative) data sources eg sight impairment registers.
All children <16 years diagnosed during a 1 year period as being VI/SVI/BL will be identified through their managing ophthalmologists and paediatricians using national active surveillance, including through the British Ophthalmological and Paediatric Surveillance Units. Standardised detailed data will be collected longitudinally and analysed using robust methods appropriate for hierarchical data.
The study will be undertaken in collaboration with the British Childhood Visual Impairment Study Group (established in 2000 for the team’s prior study ‘BCVIS’ of blindness alone).
Outcomes:
- Findings about frequency and current/ emerging determinants will inform prevention and treatment and targeting of screening.
- The ‘map’ of clinical and public health services involved in detection and management will inform commissioning and delivery of NHS services
- Findings about frequency and outcomes will permit the first robust health economic modelling of childhood visual disability
- Compilation of an evidence base about social determinants of childhood visual disability will inform national policies addressing inequalities and serve to strengthen advocacy for health, social and educational services, embedding visual disability in the broader Child Health agenda.