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Editors Selection IGR 13-2

Patient Organizations

Comment by George Lambrou on:

24144 Notable role of glaucoma club on patients' knowledge of glaucoma, Chen X; Chen Y; Sun X, Clinical and Experimental Ophthalmology, 2009; 37: 590-594

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As eye-care professionals, we may feel we have come to grip with at least some of the mechanisms of glaucoma, but at the same time we recognize that our patients' understanding is, more often than not, incomplete ‐ hence all recent efforts to promote public education and awareness of the disease. In their paper, Chen et al. (1341) describe an initiative to better educate a number of their patients through the 'Shanghai Glaucoma Club', a decade-old association numbering at the time of writing about 600 glaucoma patients and 20 ophthalmologists. The Club organizes regular activities, such as lectures or interactive sessions with physicians. In order to assess the impact of the Club activities, the authors have conducted a survey among 301 Club members, using an ad-hoc questionnaire and compared the responses to those collected from 314 patients recruited from a local glaucoma clinic. The questionnaire comprised 20 questions, grouped in three categories: Understanding of the disease (including knowledge of one's own glaucoma type); Compliance to medication / follow-up; and Impact of disease on life habits. Not surprisingly, Glaucoma Club members scored significantly higher in all three question categories. Analyzing the various factors that may have impacted the results, the authors recognize that Club membership is not the only explanation for their members' higher awareness of the disease. Thus, members of the Club tended to be older and better educated than the general patient sample, and primary glaucoma patients (more frequent among Club members) demonstrated better understanding of the disease than patients with secondary glaucoma. Still, the overall level of understanding and compliance to follow up and treatment was higher among Club members, with dramatic differences in some questions. For example, 93% of Club members knew their type of glaucoma (vs. 63% of the general patients) and 64% identified visual fields as the best indicator of disease progression (vs. 38% of general patients).

Members of a Glaucoma Club who had regular educational activities, had a better understanding of their disease, compared to a general glaucoma-patient sample

Although no conclusions can be drawn on the cost-effectiveness of disease education through patient associations and glaucoma clubs, the paper illustrates one of several 'patient-centered' activities implemented around the world, which definitely contribute to increasing glaucoma awareness and promote support to patients that have to cope with a chronic and often silently progressive incapacitating disease.

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