31st December 2013
Figures released today from the Childhood Eye Cancer Trust (CHECT) show that since 2012, almost a quarter (24%) of babies and young children diagnosed with retinoblastoma (Rb) presented with a squint as a symptom.¹ It is the second most common symptom after leukocoria (white pupillary reflex).
Joy Felgate, Chief Executive of CHECT said: “In our experience, some babies and young children are facing serious delays in receiving life-saving treatment as a result of parents either being told incorrectly that their baby’s squint is completely normal, or being given a non-urgent squint referral.”
As squints are common in babies up to the age of three months, the only way to determine whether this is a sign of a much more serious condition is to carry out a simple red reflex test, which is a non-invasive procedure, simply involving looking in the eye with a hand-held ophthalmoscope.
Mrs Felgate continued: “Non-urgent squint referrals can take months to come through, which can be a devastating delay for a child with undiagnosed eye cancer. Retinoblastoma is a very aggressive form of cancer and any delays in diagnosis can have a serious impact on treatment options. Currently over 70% of children with unilateral Rb lose an eye to the disease.
“We are asking frontline healthcare professionals to check every squint they see with the red reflex test or, if they are don’t feel able to do this accurately, to refer the child urgently to their GP.”
A Mumsnet survey carried out for CHECT in 2011 found that 62% of parents said the person they would like to get more information about retinoblastoma from was their GP surgery, GP or nurse.² The survey also found that 50% of parents they would like to get more information about retinoblastoma from their health visitor.²
Retinoblastoma is a fast-growing cancer of the eye affecting mainly 0 to 5-year-old children. Early detection of this aggressive condition is crucial to offer the child the best chance of saving their vision, their eyes and their life.
The Trust urges health professionals to pay particular attention to children with a
- A recently onset squint
- A white reflex (leukocoria) or an abnormal reflex in flash photographs
- A change in colour to the iris
- A deterioration in vision
Occasionally a retinoblastoma may present as a red, sore or swollen eye without infection. It is important to remember, however, that a child with Rb may appear systemically well.
Following a successful campaign by CHECT, most of these symptoms are now also listed in the latest versions of the Public Child Health Record (red book).
If any of the above symptoms are detected, a simple red reflex test can rule out retinoblastoma. How to do a red reflex test
If you are unable to confidently rule out retinoblastoma with a red reflex test, NICE guidelines state an urgent referral must be made. Depending on local referral protocol, urgent referrals should be made to the GP or local ophthalmology department stating ‘suspected retinoblastoma’. Where referral is to the local ophthalmology department we recommend you call to alert them to the case and to find out how quickly urgent referrals are seen (in some cases it can be longer than two weeks).
