Basic Demographic Information

How did you hear about this project? Advertisement Email/Newsletter Facebook Family or Friend Magazine Article Newspaper Story TV/Cable News Twitter Website/Search Engine YouTube Other

Gender: Male Female

Age: 15161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960616263646566676869707172737475767778798081828384858687888990919293949596979899100

Which state do you live in? QLD NSW VIC WA SA TAS NT Overseas

Where do you live? In a city Regional town

Do you have any children or grandchildren? Yes No

Number of children: 0 1 2 3 4 5 5+

Number of grandchildren: 0 1 2 3 4 5 5+

Scenario:

You have recently taken these photographs of a family member on separate occasions.

Task 1.

Do you notice anything about these photographs?

Yes No

If you had taken these photographs would you be concerned?

Yes No

How would you initially find out more information about what you notice?

Internet GP Friend Family Member Health Nurse Optometrist Eye Doctor Children's Doctor I would not enquire Other

You decide to search the internet...

Task 2

In the field below please search to find out what you think could be wrong with their eye. Click the next button when you think you know what it could be and what you should do about it. Please click on at least one search result.

Task 3.

What do you think the most likely diagnosis is?

Task 4.

Could this be anything else?

Yes No

Please list what else it could be?

Task 5.

Would you do anything about this?

Yes No

What would you do?

How Urgently would you do this? Today This Week This Month This Year

Please list your reasons why not

Do you work or have a background in healthcare? Yes No

Please specify: Nursing Medical Optometry Allied Health Other

Final Demographics Data Question:

Do any of your children/grandchildren have any known eye problems?

Yes No Unsure

Thank you for participating...

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Find out more

That glint should make you think...
"Leukocoria or white pupil reflex"

Often leukocoria is seen by the parent in family photographs or with the naked eye. Delay in diagnosis for retinoblastoma is common and can result in further advancement of the disease with adverse consequences. All published reports on delayed diagnosis of retinoblastoma recommend improved education for health practitioners and the general community alike of the potentially sinister sign of leukocoria. Such education programs have not been forthcoming, except for sporadic cases reported in the newspapers and magazines. Earlier diagnosis could save the child's vision, eye or their life.

This research project aims to identify the free text search words people might use to seek further information on photographic findings using online search engines. By determining the most commonly used free text search words, recommendations and changes can be made to ensure prompt access and direction via the internet to appropriate, reliable information regarding retinoblastoma and cataract, and the importance of seeking urgent referral to a medical practitioner. This better access may in turn lead to reduced delays in diagnosis and improved outcomes for the affected individual.

This work was supported by an Australian National Health and Medical Research Council Centre of Research Excellence in Translation of Genetic Eye Research.

• A 'white' pupil seen in photographs could indicate any of the following:
  • Reflection off the optic nerve – photographic artefact
  • Retinoblastoma
  • Cataract
  • Or other less common eye conditions.
    • Coloboma
    • Retinopathy of prematurity
    • Retinal detachment
    • Toxocara
    • Retinal malformation
    • Coats disease
    • Norrie disease
    • Persistent hyperplastic primary vitreous


• If you have taken a photograph like this, you should seek URGENT medical attention to confirm the diagnosis.


• Retinoblastoma (RB) – malignant eye tumour
  • Can occur in one or both eyes
  • Can be present at birth, or develop in the first 5 years of life
  • Can be hereditary – if there is a history of RB in your family you MUST seek further advice from an ophthalmologist (eye specialist) or genetic counsellor
  • Earlier detection can save the child’s vision, eye or life
  • Untreated, RB can be fatal
  • To find out more see www.daisyfund.org; www.chect.org.uk