Letters to INCTR

INCTR solicited information from Retinoblastoma Strategy Group Members about their activities in trying to improve the early diagnosis of retinoblastoma. Here are some of the replies.

First of all I would like to congratulate you on the success of the newsletter, it is indeed very informative and very well composed, particularly the president’s message. The quotations and information provided in the panels are wonderful and can be used for teaching purposes. You must be working very hard to collect all this material, and to use it to create such a wonderful newsletter.

With regard to our activities in retinoblastoma, we have been running a regular retinoblastoma clinic in which ophthalmologists, radiotherapists, pediatricians and other professionals sit and discuss each case. This has helped us to bring down the stage of the disease at diagnosis and the severity of the disease at the time of presentation. We are planning to run a short advertisement on the radio and on TV channels which attract the largest audiences. We are also about to bring out a brochure which would be distributed to various hospitals and private clinics to make the general practitioners more aware of retinoblastoma and to help them make an early diagnosis of the disease.

L. S. Arya
Dept of Pediatrics
All India Institute of Medical
Sciences
Delhi, India

We find that one of the main reasons for the late presentation of children with retinoblastoma in India is because the ophthalmologist/pediatrician tells the parents that “enucleation (removal) of the eye” as the only treatment option. Naturally, few parents accept this and most then take the child to people practicing “Alternative Medicine” and finally come to the cancer hospital only when there is extensive proptosis (bulging eye) and/or disseminated disease. So at present we are targeting the ophthalmologists by giving lectures and presentations at various ophthalmological meetings.

At the same time pediatricians are targeted through the “SIOP initiative” (workshops for pediatricians to provide basic information about pediatric oncology). After this we plan to target the parents directly through brochures and announcements via public media such as TV channels and newspaper advertisements. The information provided will make them aware of the fact that they should take their child to see an ophthalmologist if the child has a white eye reflex or squint.

We hope that we are successful in this undertaking, since India is a country where the incidence of retinoblastoma is more than in the industrial countries, where retinoblastoma is more common in children in lower socio-economic strata, and where most children present with advanced disease. Shripad Banvali.
Department of Medical Oncology
Tata Memorial Hospital
Mumbai, India

Here is briefly what we have done to encourage early diagnosis here in Santa Cruz in the last year:

1. We have been appearing in a TV program directed to women, talking about early diagnosis in children with cancer, including retinoblastoma.
2. We have a space once a week in a program broadcast via the University TV channel.
3. Some radio programs have been also done, but not on a regular basis.
4. Dr Yolanda Ernst has traveled to cities near the frontier, far from Santa Cruz, and given information about early diagnosis to physicians that work in these rural areas.
5. We have already contacted most of the ophthalmologists in town and had several meetings to speak about early diagnosis and referral of children with retinoblastoma.
6. Every September, there is an International Fair/Exhibition in town and we had a special stand where last year we gave out 7,000 pamphlets about early diagnosis of retinoblastoma, including pictures of patients, to the visitors.

Since our first retinoblastoma meeting where we discussed strategies for early diagnosis of intra-ocular tumor, we have developed a campaign in Brazil for the early diagnosis of retinoblastoma. The cat’s eye reflex is not well-known by the general public, or even by ophthalmologists and pediatricians. The main educational tool is a film in which we will show the appearance of the cat’s eye reflex—an early sign of retinoblastoma that can also be seen in flash photographs. The film will also be translated into other languages and made available to people in other countries who might like to use it. We have already had several requests. We also plan to send cards with photographs of children with the cat’s eye reflex to doctors and to prepare a booklet for new mothers.

Once this campaign is underway, we will try to introduce the concept of performing fundoscopy (looking inside of the eye with a simple instrument) for all children at approximately one month old. If obliged by law in Brazil, as is a test for another rare disease called phenylketonuria, nearly all cases would be detected early.

Sidnei Epelman
Dept. of Pediatric Oncology
Santa Marcelina Hospital
Saõ Paulo, Brazil