This is an epidemic and should be treated as such.

Creig Hoyt, MD, Professor of Ophthalmology at University of California, San Francisco

CVI (Cerebral / Cortical Visual Impairment) is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain. And it’s currently the leading cause of blindness and low vision in children.

Using health insurance data and advanced analytics, the CVI Center at Perkins School for the Blind conducted an assessment focused on children and young adults with CVI in the U.S., drawing upon analysis from McKinsey & Company. This article explores the epidemiology of CVI and the pressing need for greater awareness, accurate diagnosis, and improved access to quality care.

Why does this matter?

CVI is common – but alarmingly underdiagnosed

Despite being the leading cause of childhood blindness and low vision, CVI isn’t widely recognized, diagnosed or understood – by educators, the medical community or even many vision professionals.

CVI poses significant risk to the future of our children

We estimate that there are over 180,000 kids with CVI in the US – and most of these kids are not being diagnosed.

Children with a missed diagnosis may not receive the supportive care they need to learn and find their own success. (And even those with a CVI diagnosis have difficulty finding specially trained educators.) 

CVI represents opportunity: We can improve outcomes

With greater awareness, accurate diagnosis, and improved access to quality care and educational services, we can begin to improve outcomes.

We found that there are many regions with elevated rates of CVI and high social risk, so we must focus efforts in areas of greatest social need.

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Everyone’s experience is unique

Fewer than 20% of likely CVI cases may receive a diagnosis…

To better understand the impact of CVI in the United States, we leveraged nationally representative health insurance data and advanced analytics to identify patients with diagnosed CVI and likely CVI.

We identified 24,260 patients with diagnosed CVI…

… and using advanced analytics, we identified 155,980 additional patients with likely CVI.

This brings our total estimate to at least 180,449 patients with diagnosed or likely CVI in the US.

Based on our analyses, the estimated rate of diagnosis in the US is less than 20%.

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The estimated prevalence of diagnosed CVI varies across the country. Most counties have less than 50 cases per 100k individuals aged 0-22, while others (predominantly in New Mexico, Texas, Kansas, and Oklahoma) exhibit a medium to high estimated prevalence, ranging from 100 to over 250 cases per 100k.

The estimated prevalence of likely CVI varies as well, ranging from less than 50 to over 250 cases per 100k. The counties with the highest overall estimated prevalence of CVI are primarily found in New Mexico, Texas, Oklahoma, Alaska, northern California, southern Oregon, and the New England region.

The Southeast and Mid-Atlantic regions tend to have medium to high CVI prevalence, while the majority of the Midwest and Mountain regions experience low to medium prevalence.

… and there are possibly many more children with CVI

Our analyses likely represent a conservative estimate of actual CVI cases. One study found 1 in 30 primary school children may have CVI-related vision problems. Patients in our data experience multiple comorbidities and frequent healthcare encounters, consistent with published literature.

For example, 65% have a cerebral palsy diagnosis, 64% epilepsy, 72% developmental delay, 23% autism spectrum disorder, and 20% genetic anomalies. They experience an average of 14 specialty and seven primary care encounters. However, there is a wide spectrum of experience. Children with CVI and normal visual acuity, or lack of other comorbidities, and risk factors are less likely to appear in the data or be identified as having likely CVI.

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Shaping the future: How can we improve CVI outcomes?

Children with CVI and their families face significant challenges and a confusing healthcare landscape that is often inadequate to support their needs. Families, care providers, educators, and policymakers can take decisive action to ensure this group gets the services and support they need to fully access their world and define their success.

Enable diagnosis and measurement of CVI

Educating parents, educators, and healthcare professionals about the unique visual behaviors and manifestations of CVI and appropriate referrals to providers familiar with diagnosing CVI can facilitate timely diagnosis and appropriate intervention.

Developing standardized and clinically validated diagnostic tools is essential to facilitate prompt diagnosis, especially for children with comorbidities (e.g., cerebral palsy, epilepsy).

Standardizing coding and measurement for CVI is crucial for accurate data tracking and understanding the unmet needs of this population. A dedicated and current CVI code in the International Classification of Diseases (ICD) system would enable better identification, monitoring, and evaluation of CVI through research.

Improve availability and access to support services

Increasing availability of specialized support providers (e.g., Teachers of the Visually Impaired (TVIs), pediatricians, occupational therapists) is necessary to holistically meet the needs of children with CVI and ensure their success in society.

Improving access to resources designated for the blind and visually impaired could range from including CVI in eligibility criteria for state-based early intervention and special education services to expanding definitions for determining legal blindness to addressing community access and transportation barriers.

Focus efforts in areas of greatest social need

Successful CVI support programs should consider and help address a range of socioeconomic risk factors (e.g., rates of poverty, food insecurity, maternal mortality).

Directing resources to areas of greatest social need has the potential to achieve outsized impact by supporting children who are at the highest risk of being overlooked.

In summary, raising awareness, advocating for inclusive policies, and addressing socioeconomic risk factors are crucial steps in empowering children with CVI. By focusing on these steps, we can improve outcomes for a generation of children.

Data Sources:

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McKinsey Health Institute, McKinsey & Company. Vulnerable Populations Dashboard.