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Babies Count: the national registry for children with visual impairments, birth to 3 years
Deborah D Hatton1, Eric Schwietz, Burt Boyer
1F.P.G. Child Development Institute, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Insights
The Babies Count registry reveals that cortical visual impairment, retinopathy of prematurity (ROP), and optic nerve hypoplasia (ONH) are leading causes of childhood visual impairment in the US. Delays in diagnosis and service referral impact outcomes for these young children.
Area of Science:
- Pediatric Ophthalmology
- Public Health
- Epidemiology
Background:
- Systematic data on childhood visual impairment prevalence is lacking, especially for those under age 6.
- The Babies Count registry collects data on children aged 0-3 years with visual impairment in the US.
Purpose of the Study:
- To describe the epidemiology of visual impairment in young children using data from the Babies Count registry.
- To identify prevalent visual conditions and associated factors in children aged birth to 3 years.
Main Methods:
- Data collected from 2,155 children entering early intervention programs.
- Included diagnosis, functional vision, demographics, family characteristics, and co-occurring conditions.
- Concurrent visual pathology and systemic disabilities were documented.
Main Results:
- Cortical visual impairment, retinopathy of prematurity (ROP), and optic nerve hypoplasia (ONH) were most common.
- A 4.5-month average delay existed between visual impairment diagnosis and service referral.
- Optic nerve hypoplasia (ONH) was associated with poorer visual outcomes compared to other conditions.
Conclusions:
- Prevalent childhood visual conditions in the US differ from those in developing countries and adults.
- Babies Count data offers valuable insights into the epidemiology of visual impairment in young US children.
- Understanding the impact of these disorders is crucial for preventive medicine and healthcare funding.
Introduction:
Information about the prevalence of visual impairment in children is not collected systematically. Further, little information is available about children under age 6. Babies Count is a national registry of children with visual impairment in the United States, aged birth to 3 years.
Methods:
Data were collected on 2,155 children at the point of entry into specialized early intervention programs. Data include patient diagnosis, functional vision, age, gender, ethnicity, and family characteristics. Concurrent visual pathology and systemic disabilities were also documented.
Results:
Of the sample of 2,155 children, 1,167 (54%) were boys; approximately 40% of the children were legally blind, and 68% had disabilities in addition to visual impairment. Cortical visual impairment, retinopathy of prematurity (ROP), and optic nerve hypoplasia (ONH) were the three most prevalent visual conditions. In children with these three conditions, those with ROP were diagnosed the earliest (mean, 3.4 months), and those with cortical visual impairment were diagnosed latest (mean, 7.6 months). There was on average a 4.5 month mean lag between the diagnosis of children's visual impairment and referral for services. ONH carried a poorer visual outcome when compared with other diagnoses, including CVI, ROP, and albinism.
Conclusions:
Prevalent visual conditions in children in the United States differ from those found in developing countries and in adults with visual impairment. Babies Count is a comprehensive set of data that may affect our understanding of the epidemiology of visual impairment in the United States. In an era of preventive and outcome-based medicine, and with competition for health care and research funding, these data provide a valuable means for understanding the impact of these disorders on society.
