July 2018
Volume 59, Issue 9
Open Access
ARVO Annual Meeting Abstract  |   July 2018
Mapping Global Prevalence, Treatment Capacity and Expertise for Retinoblastoma
Author Affiliations & Notes
  • Helen Dimaras
    Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
  • Kaitlyn Hougham
    Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
  • Jamie Fujioka
    Ophthalmology & Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
  • Footnotes
    Commercial Relationships   Helen Dimaras, None; Kaitlyn Hougham, None; Jamie Fujioka, None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science July 2018, Vol.59, 1641. doi:
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      Helen Dimaras, Kaitlyn Hougham, Jamie Fujioka; Mapping Global Prevalence, Treatment Capacity and Expertise for Retinoblastoma. Invest. Ophthalmol. Vis. Sci. 2018;59(9):1641.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : Retinoblastoma is curable, but outcomes remain poor in low-and-middle-income countries. Optimal resources and expertise for retinoblastoma management have been outlined in published clinical guidelines, and serve as a guide to inform health policy, at national, regional and institutional levels.

Methods : We conducted a situational analysis of resources and expertise available at global retinoblastoma treatment centers. Prevalence of retinoblastoma was calculated for each country, based on a published incidence of 1:16,000 live births, and compared to patient numbers reported from each treatment centre. An online platform was developed using ESRI ArcGIS software (Redlands, CA) to disseminate this information in an interactive and data-rich format (www.1rbw.org).

Results : We documented information from 178 treatment centers in 76 countries: 14 (8%) from low-income (LI), 97 (54%) from middle-income (MI) and 67 (38%) from high-income countries (HICs). An estimated 1421, 6545, and 784 new patients are expected each year in LICs, MICs, and HICs, respectively. The map documents 41% of the global retinoblastoma patient burden (3573/8750). This represents 10% (139/1421) of patients in LICs, 42% (2743/6545) of patients in MICs and 88% (691/784) patients in HICs.
Enucleation was available at 100% of HIC centers vs. 99% of LMIC centers. 2D Ultrasound was widely available (98% HIC vs. 93% LMIC), but RetCam was mostly in HIC (98% HIC vs. 68% LMIC). Focal therapy was available in 98% of HIC centers vs. 83% of LMIC centers. Systemic, intraarterial and intravitreal chemotherapy were available in 98%, 73%, and 84% of HIC centers vs. 80%, 31% and 42% of LMIC centres, respectively. Radiotherapy was available in 93% of HIC centers, and 62% of LMIC centers. Ophthalmologists and oncologists were available 100% of HIC centers vs. 97% and 79% of LMIC centers.

Conclusions : Knowledge of where and how retinoblastoma children are managed worldwide provides an efficient and rapid path for parents to access urgent care. Estimated incidence vs location and capabilities of treatment centers reveals opportunities to increase capacity, collaboration and coverage in various regions. This first-of its-kind collaboration promotes global standards of care, setting the stage for multicenter clinical trials and accelerating the translation of results from lab to clinic.

This is an abstract that was submitted for the 2018 ARVO Annual Meeting, held in Honolulu, Hawaii, April 29 - May 3, 2018.

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