What are the current guidelines for follow-up care and surveillance in children treated for retinoblastoma?

Follow-up care and surveillance in children treated for retinoblastoma should focus on monitoring for late effects of treatment, secondary tumours, and visual function.

Children who have undergone treatment for retinoblastoma are at risk of developing late-onset side effects such as secondary tumours and visual impairment, which may occur months or years after treatment.

It is important to assess the individual risk of late effects at the end of treatment and document these in a written treatment summary, which should be explained to the child’s family or carers.

Regular ophthalmological assessments are recommended to monitor for visual impairment and detect any recurrence or secondary tumours early.

For those who have received cranial radiotherapy as part of their treatment, ongoing surveillance should include monitoring for cognitive decline, endocrine dysfunction (including pituitary function), hearing loss, and stroke risk factors such as blood pressure, HbA1c, and cholesterol.

Encouraging a healthy lifestyle, including exercise, a healthy diet, and smoking cessation (if applicable), is advised to reduce stroke risk.

Neuropsychological assessments may be considered for children at risk of cognitive decline.

Referral to audiology for hearing tests should be considered if there is a risk of hearing loss.

Any asymptomatic ischemic stroke identified on imaging during active monitoring should prompt referral to stroke services.

These recommendations align with NICE guidance on surveillance for late effects of treatment in children with brain tumours, which is applicable to retinoblastoma survivors due to similar risks from treatment modalities.