Pathways to Diagnosis
Each year, the Childhood Eye Cancer Trust reports back on families’ experiences of being diagnosed with retinoblastoma (Rb) in the UK: the symptoms they noticed; the healthcare professionals they saw; and how long it took them to reach one of the specialist retinoblastoma centres (Birmingham Children’s Hospital, BCH, or the Royal London Hospital, RLH).
By recording and reporting this information in the Pathways to Diagnosis report, we can identify where problems are occurring, and what CHECT may be able to do to help.
2023 round-up
Overall 51 children from the UK were diagnosed with retinoblastoma in 2023, and we have information from 33 of these families. Eight children were diagnosed through screening, either due to family history or other conditions, and we were unable to gather Pathways from the remaining ten. So what were families’ experiences in 2023?
Symptoms
A white glow in the eye remains the most common symptom overall. This year 21% of parents spotted white eye in a photo; but less than average saw the white glow in their child’s eye (48% in 2023 vs ten-year average of 57%).
After a white glow, a new squint was the next most-common symptom, observed in a third of children later diagnosed with retinoblastoma.
Healthcare professionals
Unusually, this year less parents took their child to the GP in the first instance on noticing something unusual with their eyes than any year since this study started in 2012. And more than any other year took their child to an optician in the first instance.
This may be either because families are struggling to get an appointment with their GP, or because GP surgeries are ‘triaging’ eye queries towards opticians. Either way it is an interesting scenario, and potentially positive for those families concerned, as opticians have a much better track record at making appropriate referrals for children with retinoblastoma than GPs (69% vs 45% from 2014 – 2023).
Encouragingly, this year saw more children than ever since 2012 following the appropriate referral route. 67% of children received urgent referrals after their first consultation with a healthcare professional to their local ophthalmology department (and then onto one of the specialist retinoblastoma centres). This is compared to the ten-year average of 44%.
Unsurprisingly, this was reflected in the overall speed of referrals. In the last ten years, 22% of children were diagnosed at one of the specialist retinoblastoma centres within a week of first going to a healthcare professional with signs of retinoblastoma. In 2023 this was 59%. Overall 72% of children were diagnosed within the recommended two-week period, second only to 2022 when 73% of children were diagnosed within this time period.