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P.A. Kurz, M. Ward, M.J. Cooney; Assessment of Effectiveness of Communication of Information & Available Resources to Patients with Age-related Macular Degeneration . Invest. Ophthalmol. Vis. Sci. 2003;44(13):1827.
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Purpose: To assess knowledge & understanding of age-related macular degeneration (AMD) in patients with this diagnosis. We also gather data on the patients’ awareness & utilization of available resources. Methods: Survey of 50 consecutive patients with AMD. Results: While 84% of patients surveyed were interested in learning more about AMD & 63% felt learning more would help alleviate their fears, 64% did not know how to access & utilize resources such as AMD associations. 38% stated they did not know where to begin to find trustworthy & comprehensive information on AMD. 98% had never attended an AMD support group. 82% had not been counseled on living with AMD. 86% had vision loss in one or both eyes, yet only 42% felt they had an understanding of available low vision services & 72% had never been referred to a low vision specialist. 68% of patients were fearful of their future with AMD while an additional 12% weren’t sure. Upon diagnosis, 34% of patients felt they would go completely blind from AMD & these patients rated their fears higher than those who knew otherwise. Interestingly, those patients who were unsure whether complete blindness was possible rated their fears highest. Of patients surveyed, 72% felt they obtained most of their information about AMD from their doctor. While 48% talked with their ophthalmologist longer than 10 minutes regarding their diagnosis and just 28% talked less than 5 minutes, only 58% of patients left their appointment feeling they had an adequate understanding of AMD. More time spent with the ophthalmologist as well as seeing a photograph of AMD did improve the patients’ perception of understanding AMD. Of those who felt they had no understanding of AMD, only 20% were shown a photograph of AMD. Of those who felt they had an understanding of AMD, 62% had seen a photograph of AMD. Conclusion: As the major source of information on AMD for most patients, ophthalmologists need to develop methods to improve patients’ understanding of the disease & resources available to them. A macular degeneration center with people dedicated to conveying comprehensive information in a coordinated & efficient manner will improve a patient’s understanding of AMD, make the ophthalmologist visit more valuable to the patient, and enable utilization of available resources. Concurrently, patients’ fears may be decreased and quality of life may be improved.
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