Data that tracked the diagnosis of retinoblastoma (Rb) in the UK across 10 years has been released by the Childhood Eye Cancer Trust (CHECT).

The charity started collecting information from more than 300 families via a survey in 2012 and has released the data to mark World Retinoblastoma Awareness Week (May 8-14).

CHECT hoped to reduce delays in diagnosis of Rb experienced by families and quantify anecdotal feedback from families to highlight where delays occurred.

Petra Maxwell, information and research manager at CHECT, told Optician: ‘These figures give us a real insight into what’s happening on the ground for families whose children are diagnosed with this rare cancer and how that has changed over the last decade.’

CHECT found that some families were seen within days of referral while other families waited six months and had to visit healthcare professionals on a number occasions before receiving a diagnosis.

Data showed that in 2012, 10% of parents who noticed a sign of Rb in their child’s eyes took them to an optical practice in the first instance. By 2021, this had almost doubled to 19%.

During the pandemic in 2020, 3% of those diagnosed with Rb had seen an optometrist in the first instance. CHECT said the number of children who received a diagnosis after six months rose to 24% in 2020 against the 10-year average of 11%. In 2021, this figure was 8%.

CHECT said that optical practices were consistently a good route for referral, with 73% over the past 10 years making appropriate referrals.

Maxwell said opticians played an increasingly crucial role in ensuring early diagnosis for children with Rb.

‘However, some parents have been turned away from practices who do not examine very small children. We encourage stores to sign up to the Opticians Protocol, which states that all staff working in an optical practice should be aware of the main signs of Rb and offers clear information on what action to take if a parent is concerned by any of these symptoms,’ Maxwell added.

Data showed that parents most commonly identified a white glow in their child’s eye as a symptom of Rb at 60%, with a squint noticed in 34% of cases and a white eye in a photograph spotted in 16% of cases.