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World Orthoptic Day 2017

To mark this year’s World Orthoptic Day (5 June), we spoke to Sandra Staffieri on her role as a Clinical and Research Orthoptist at the Centre for Eye Research Australia.

World Orthoptic Day

1. What role do orthoptists play in treating eye problems in kids?
Orthoptists undertake specific training to examine, diagnose, manage and treat a variety of childhood eye conditions, most commonly this includes strabismus (turned eye) and refractive error (glasses). A child’s vision develops from birth until around seven or eight years of age and any condition that affects the eyes can significantly affect vision development. Less commonly, a child can develop eye problems that are usually associated with adults – like cataract and glaucoma. These conditions can be quite devastating to the child’s vision development and treatment is not as straightforward, particularly in the case of cataract, as it would be in an adult.

2. How closely do you work with ophthalmologists on a day to day basis?
Orthoptists usually work in public hospital clinics or private practices with an ophthalmologist. Orthoptists are very much an integral part of the eye health care team, performing all the preliminary examinations and assessments prior to the examination by the ophthalmologist. Orthoptists and ophthalmologists will often discuss difficult cases and formulate the best management plan for that individual child or family.
In some cases, orthoptists will work in their own private practice with paediatric patients being referred for assessment or management of eye movement problems (strabismus) and vision loss (amblyopia). Orthoptists are also active in the area of paediatric low vision. Through organisations such as the Royal Institute for Deaf and Blind Children and Vision Australia, an orthoptist can assess children with significant vision impairment in their own home environment or school setting and then provide a report to assist parents or teachers to provide a safe environment for the child as well as suggest ways to best optimise their vision for learning.

3. Can you tell us about your work with the Centre for Eye Research Australia as a research orthoptist?
I have been extremely fortunate to have spent the last 10 years at the Centre for Eye Research Australia as a research orthoptist in the Clinical Genetics Unit. I have had the opportunity to work on many projects that involved assessing adults and children with different eye diseases or disorders, such as strabismus, cataract and glaucoma and then collect DNA samples to be sent for analysis. In this way, we are able to compare each individual’s eye problems – or lack of – with their genetic make-up and try to uncover the gene changes that result in their eye disease. We often look closely at families with hereditary eye disease as this gives us vital clues as to the possible gene changes that cause these conditions. This knowledge helps us better understand how these conditions occur and perhaps develop better treatments or strategies for earlier diagnosis to limit vision loss. It has been exciting to marry my clinical skills with research skills and be given the opportunity to be at the forefront of gene discovery, cutting-edge technology and gene-therapy which is on the horizon. After so many years looking after children with irreversible vision loss I can see the hope that research can provide for future generations.

4. You’ve done quite a bit of work in retinoblastoma care, can you tell us a bit about that?
I have been the Retinoblastoma Care Coordinator at the Royal Children’s Hospital in Melbourne for 23 years. What started out as essentially an administrative role, it has become much more than that. I coordinate all the care of children with retinoblastoma as there are many doctors, nurses, allied health personnel and teachers involved in each child’s care and treatment over many, many years. I also spend time counselling parents, providing information and assistance as required. With the support of a Centres of Research Excellence grant from the National Health and Medical Research Council (NHMRC), I was able to start looking at causes of delayed diagnosis for retinoblastoma in Victoria. The findings of this research paved the way for me to undertake a PhD to develop and evaluate an awareness program for parents to recognise and respond to the very earliest signs of the disease. I have been fortunate enough to be supported for my studies by an NHMRC public health Postgraduate Scholarship.

5. It must be hard working with children affected by serious eye conditions, such as retinoblastoma. What role does the orthoptist play in helping parents cope with the situation?
I spend a lot of time with parents not only at the acute stage – at first diagnosis and during treatment – but also in the months and years that follow to review the information they have been given and help them navigate their way through the health system. Not only does their child have cancer, they will also likely have a vision impairment of some kind. In addition, I support the survivors of retinoblastoma (many of whom we looked after a generation ago!) who then have their own children with the same disease. I spend considerable time answering questions they might have after they have been to see the genetic counsellor.
All parents and survivors are provided with a lot of information that is often complex and difficult to understand, at a time when they are very anxious and distressed. My role is very much one of counselling and explaining the disease again, the treatment options and prognosis. In the acute stage, parents can be very worried about a red eye or some new sign or symptom. I like to think they can call me at any time and together we can decide if they need to be seen urgently, and if so, I can facilitate that. Yes, it is hard sometimes, because you do develop a relationship with the child and the family over time but I guess I am only doing what think I would want someone to do for me if I were in their shoes. I cannot begin to imagine, even after all these years, how it must feel to be told your child has eye cancer – because usually, they are not even sick.

6. What’s the most challenging part of your role?
It is my privilege to care for children with retinoblastoma and their families, but the most challenging thing is feeling helpless. Sometimes there is nothing more that can be done and the child needs to have their affected eye removed. They might have gone through many months of invasive treatments including chemotherapy, and we still lose the war. Sometimes we lose the war for both eyes.
I guess the other difficulty is wondering if the child might have been able to be diagnosed earlier, the outcome might have been different. The two most common signs of retinoblastoma are a white pupil or an eye turn. The child will be otherwise well, so it is common for these early signs to be overlooked simply because parents don’t know any different. In developed countries, the child will lose their eye and might need chemotherapy, but they will survive. In developing countries though, they will likely lose their life. It is challenging for me to think that the majority of children in a developing country with retinoblastoma will die because of delayed diagnosis when really it is the most survivable paediatric cancer in a developed country.
I look forward to my research perhaps developing a sustainable and cost-effective program to raise awareness of these early signs of retinoblastoma. Looking further ahead I hope to be able to examine how such a program might be adapted and implemented in developing countries to save lives.

Last updated: November 29, 2018

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