Author: Dr. Sandra Staffieri, BAppSc(orth), PhD

I am an orthoptist by training, so my expertise lies in vision and eye problems, particularly in children. I have worked in the eye department at the largest paediatric hospital in Melbourne, the Royal Children’s Hospital, for 35 years. 26 years ago, I was asked to help coordinate the care of children diagnosed with retinoblastoma. Little did I know this would become a lifelong passion of mine.  As a Retinoblastoma Care Coordinator I have the privilege to walk alongside newly diagnosed families from diagnosis, through treatment to maintenance – and watch the children grow up and do amazing things – just like anybody else. I have been doing this for so long, I am now looking after the next generation – and that has been rather special.

All aspects of retinoblastoma are important. Genetic testing, the impact diagnosis and treatment has on emotional well-being on the whole family unit, survivorship, surveillance, and screening. That said, I have a particular interest in delayed diagnosis of retinoblastoma and raising awareness of the early signs of the disease. This brought me to completing my PhD in this area.

My research involved developing and evaluating an information pamphlet for parents to recognize the early signs of retinoblastoma – turned eyes (strabismus) and white pupils (leukocoria). Because of my background in children’s eye problems, I acknowledged that strabismus and leukocoria can mean lots of different problems – not just retinoblastoma. Armed with this understanding, I successfully advocated to our health department to include this information for parents as it was more than just the small number of children with retinoblastoma I was looking to diagnose early; it was all children with any eye problem that presented in the same way. Other diseases that present with these signs are often not as serious as retinoblastoma, but like retinoblastoma, early diagnosis means early treatment and better outcome.

I have been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017, but have known many of the Canadian retinoblastoma specialists for almost a decade.

I am very excited to be a member of the Research Development Working Group – Research Priority #1 “How to increase early diagnosis of retinoblastoma”. Due to my background in research, developing health information, childhood eye problems, and retinoblastoma; I am the research lead for a specific project that we hope will lead to earlier diagnosis. Together with other researchers, parents, and survivors interested in this topic we are trying to understand the process parents go through to achieve a retinoblastoma diagnosis in their child. When we identify the “barriers” (what caused delay) and the “enablers” (what worked well) for parents whose children have been diagnosed with retinoblastoma, only then can we see what worked and what didn’t – and then we can develop an action plan for improvement.

I look forward to completing this study and making a difference, where a difference can be made.