PU Conference Series: Euretina 2018

Toolkit Improves Education, Outcomes of Age-Related Macular Degeneration Toolkit is designed and developed by patients and clinicians to provide a trusted source of information.

A n educational age-related macular degener- ation (AMD) toolkit has been collaboratively developed to provide a trusted source of information. It was devised and developed by patients and clinicians to educate and advo- cate collectively, according to a presentation at EURETINA 2018. “As the complexity of AMD becomes clearer, it is critical that health policy makers are informed. Collaboration between advocates representing stakeholders including, patients, medical pro- fessionals, researchers and industry, can lead to the provision of the tools needed to advocate effectively for improved delivery of care leading to better outcomes,” the study team stated in their abstract. They noted that despite an increase in awareness of AMD over the past decade, the various stages and complexity of the disease are still not well known. Early, intermediate, and late stage AMD, including geographic atrophy and neovascular AMD, are complex conditions with differing signs and symptoms. To enhance awareness and under- standing of AMD, a central information hub was

developed by a global coalition to bring patients and healthcare professionals the most up-to-date information on the importance of early diagnosis and the various forms of AMD to effectively edu- cate and advocate. The coalition includes Retina International, Pro Retina Germany, Retina France, European Council of Optometry and Optics, Prevent Blindness USA, the Canadian Institute for the Blind, Retina Hong Kong, the Macular Disease Foundation Australia, and the European Forum Against Blindness. The international coalition of researchers, clinicians, and global patient groups devised two surveys to establish current levels of awareness of the various stages of AMD and the need for particular health-related information. The surveys allowed for the delivery of clear and understandable patient and health professional information, the study team noted. This information, which had to be written in a way that allowed for translation and use across geographic, cultural, and linguistic borders, was posted to a standalone, fully accessible web portal that is now updated regularly (http://retina-amd.org). The online information hub, which went live in November 2017, is accessible on all screens and respects the accessibility requirements of people with low vision and blindness. It provides clear and qualified information that will be translated into French, Spanish, German, Portuguese, Italian, and Mandarin, the researchers said. “The site provides tools to advocate as a global community for the development of screening programmes leading to early diagnosis of AMD expediting access to

© EURETINA 2018

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PRACTICEUPDATE CONFERENCE SERIES • EURETINA 2018