Raising retinoblastoma awarenesss

Annual figures released by the Childhood Eye Cancer Trust (CHECT) for World Retinoblastoma Awareness Week 2024 (12-18 May) reveal the key role eyecare clinicians can play in the early diagnosis of the rare eye cancer retinoblastoma (Rb).

Around one child a week in the UK is diagnosed with the condition, which mainly occurs in babies and young children up to the age in six. In 2023, a third of children later diagnosed with Rb were taken to their local optometrist by their parents in the first instance.*

Optometrists are consistently a vital route for referral, with 69 per cent** over the past 10 years making appropriate onward referrals for children, explains the charity – adding “However, there is room for improvement”. The main issue parents report to CHECT is that they have been turned away from optical practices by front of house staff, because their children are too young to be seen.

This is why CHECT has developed the Optical Assistants Protocol, a guide written for optical support staff highlighting the main signs of Rb, and what to do if a parent contacts the practice citing any of these signs.

The main symptoms reported by parents of children diagnosed with retinoblastoma are**:
• Leukocoria seen in photos or in the eye itself 76 per cent
• New onset strabismus – 35 per cent
• Change in colour of iris – nine per cent
• Loss of vision – eight per cent
• Roaming eyes / child not focusing – eight per cent
• Redness or swelling without infection – seven per cent
• Absence of red eye in a photo – one per cent

Richard Ashton, chief executive of CHECT, said: “It is really positive to see so many parents consulting their local optometrist with concerns about their child’s eyes. We know that when children are examined by an optometrist, they have an excellent chance of the signs of Rb being spotted and the correct referrals made. However, we do need to ensure these parents are not turned away and would encourage practices to make sure all their staff are aware of the need for children with symptoms of Rb being examined by the optometrist as soon as possible.”

Email info@chect.org.uk for Rb signs and symptoms leaflets for the practice reception area.

* CHECT’s Pathway to Diagnosis figures were gathered from the parents of 33 children diagnosed with retinoblastoma (Rb) in 2023. This information was recorded by support workers during the course of their conversations with families, and focused on whether the families had any prior awareness of retinoblastoma; the signs they noticed in their child’s eyes that prompted them to seek help; and the actions taken by the healthcare professionals they consulted.

** The 10-year figures refers to CHECT’s Pathway to Diagnosis figures gathered from the parents of 332 children diagnosed with Rb from 2014-2023.