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Retinoblastoma in Developing Countries

Retinoblastoma in Developing Countries. The Need for Early Diagnosis. Ian Magrath. Estimates of New Cases of Rb in the World each Year. 128,526,000 newborns survive infancy each year If incidence were 1/15,000, approximately 8,570 children would develop Rb each year

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Retinoblastoma in Developing Countries

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  1. Retinoblastoma in Developing Countries The Need for Early Diagnosis Ian Magrath

  2. Estimates of New Cases of Rb in the World each Year • 128,526,000 newborns survive infancy each year • If incidence were 1/15,000, approximately 8,570 children would develop Rb each year • If incidence were 1/7,500, approximately 17,140 children would develop Rb each year • 90% of children born in less developed countries where Rb may be up to twice as common

  3. Evidence that Retinoblastoma is more Common in Less Developed Countries • Ghana: Rb is the second most common childhood malignancy after lymphoma1 • Mali: Population based data shows incidence of 25 per 100,000 – x 5 that of western countries • Calcutta: Rb accounts for 27% of childhood tumors (excluding brain tumors) - twice as common as Wilms’ tumor or lymphoma2 • Central America: Rb is the most common solid childhood tumor 1 Welbeck JE,. Pattern of childhood malignancy in… Ghana.West Afr J Med 1998, 17(2):81-4 2 Pramanik R,. Pattern of solid malignant tumours in children--a ten-year study. JIndian Med Assoc 1997, ;95:107-8, 115

  4. Well-Documented High Incidence Rates • Incidence of 1/10,000 live births • BenEzra D, Chirambo MC. Incidence of retinoblastoma in Malawi. J Pediatr Ophthalmol 1976;13:340-343 • Freedman J, Goldberg L. Incidence of retinoblastoma in the Bantu of South Africa. Br J Ophthalmol 1976;60:655-666 • Incidence of 1/12,000 live births • Al-Idrissi I, Al-Kaff A, Senft SH. Cumulative incidence of retinoblastoma in Riyadh, Saudi Arabia. Ophthalmic Paediatr Genet 1991;13:9-12

  5. Rb is Predominantly an Issue for Developing Countries • At least 14-18,000 children develop Rb each year • More than 90% are born in developing countries • Many of these children die due to: • Lack of knowledge about the early signs of retinoblastoma • Late diagnosis • Lack of access to appropriate medical care

  6. Advanced Disease • In many developing countries, e.g., those represented in INCTR’s strategy group, some 40% of patients at least have intraorbital or extraorbital disease • Some 10% may have distant metastases • The mean age at presentation is much higher than in western nations (4-5 yrs in India, 2 years in USA) • Five-year survival rates lower by 30-40% in developing countries

  7. The Vicious Cycle Obstacles to Optimal Care Apply to both presentation and follow-up Poor access to Transportation The Cancer Center Hurricane Poor Advice Lack of knowledge Presentation with Advanced Disease Natural Disaster

  8. Addressing the Vicious Cycle Programs of Public and Non-Specialist Education Essential Outreach INCTR RSG Returns

  9. Issues in Early Diagnosis • Parents, not physicians, see the first sign of Rb in the vast majority of patients • Survival AND visual outcome are adversely affected by late diagnosis • 95% of eyes may be salvaged in early stage disease

  10. Development of an Early Detection Program • First need is to understand the reasons for late referral - will doubtless differ in different countries • Long distance to travel (Saudi Arabia) • One-eyed daughter unmarriageable (India) • Leukocoria said to be benign (Mexico, Brazil) • Inadequate examination of eye by Dr • INCTR’s strategy group is applying a questionnaire to quantify these issues in various countries and to relate disease extent to age

  11. Elements in an Early Detection Program • Education for non-specialist professionals and others at point of first contact • Public education directed particularly towards leukocoria (white pupil) – first sign in 80% of cases • Post-natal clinics; Television/Radio; Presentations at women’s or other clubs; Advertisements in appropriate locations; Special events to attract attention to the issue

  12. Early Detection • Based on findings from questionnaire, it can be decided: • How much effort to put into public versus professional education • How the situation may differ in various countries – requiring different focus • Debate on the pros and cons of screening by pupillary dilatation at birth or soon after

  13. Pupil Dilation Makes the Difference – Screening of Newborns? • Parents see leukocoria in dim light when the pupil naturally dilates • Journal of Pediatrics Online -- October 1999 • In 10 consecutive patients with known Rb, a dilated and undilated CLR exam was documented • Before pupil dilation leukocoria was detected in only 3 of 10 eyes • After dilation 10 of 10 were positive Murphree, Los Angeles

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