Figures reveal pandemic impact on retinoblastoma diagnosis

Sharing 10-year figures of diagnosis patterns, The Childhood Eye Cancer Trust also highlighted the role of optometrists in spotting symptoms


The Childhood Eye Cancer Trust (CHECT) has released figures tracking the diagnosis of retinoblastoma (Rb) in the UK over a 10-year period.

Released to mark World Retinoblastoma Awareness Week 2022, held between 8–14 May, the Pathways to Diagnosis survey gathered diagnosis figures from over 300 families in the UK.

The organisation began collating the data in 2012 as part of aims to reduce the delays in diagnosis experienced by some families in the country, stating: “Very quickly it became apparent that the range of experience was huge.”

The data revealed the role optometrists play in referral, with 10% of parents in 2012 who observed a sign of Rb reporting taking their child to an optometrist in the first instance. In 2021 this had nearly doubled to 19%.

“The impact of the pandemic was clearly seen in 2020,” CHECT found, with only 3% of those diagnosed with Rb in 2020 having visited an optometrist in the first instance.

Commenting on the impact, CHECT reported: “As feared, the huge pressures on the NHS, parental caution, and the lack of face-to-face appointments, did seem to affect referrals of children with suspected Rb."

The number of children who waited six months to receive a diagnosis rose to 24% in 2020 – compared to the ten-year average of 11%. It was the highest figure since records began in 2012.

However, delays in diagnosis appeared to reduce the following year, with the organisation reporting 8% of children waiting over six months for a diagnosis.

The organisation highlighted that the most common symptom reported by parents of children diagnosed with Rb was a white glow in the child’s eye, with 60% reporting this sign. A squint was reported in over a third of cases (34%), while a white eye in a photo was the third most common symptom at 16%.

More information for optometrists on signs and symptoms can be found on the CHECT site, while awareness-raising social media resources are also available.