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Ananth C. Viswanathan, Rashmi Mathew, Stewart Gillan, Louise Ramskold, Catey Bunce, Narciss Okhravi; Glaucoma Patient Day: Involving Patients, Improving Care, Prioritizing Research. Invest. Ophthalmol. Vis. Sci. 2012;53(14):6369. doi: https://doi.org/.
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Patient days are an important source of consultation and learning in helping to deliver patient-centered care and research. The aims of the Glaucoma Patient Day were to facilitate a two-way learning experience between patients and healthcare professionals focusing on concerns, experiences and research priorities.
This 1-day event involved glaucoma patient advocates who led planning the day around the needs of patients. On the day glaucoma patients reflected on how they felt when they were first diagnosed, underwent surgery and participated in research. Evaluation posters and pre- and post-event questionnaires were used to capture concerns of patients and health care professionals, experiences of the disease, its treatment and important research priorities.
The event focused on all aspects of clinical care, research and education for patients, carers, students and staff. There were 296 attendees. The evaluation posters showed that quality of life was most affected by fear of losing vision (46%) and impact on driving (14%). Patients voted for research to prioritize ‘finding a cure’ (45%) and ‘the cause’ (29%) of glaucoma. Very valuable and often surprising feedback was reported regarding medication side-effects. Latanoprost was the best tolerated ocular hypotensive eye drop of the 17 medications routinely available. After the day, respondents ascribed significantly greater importance to the usefulness of meeting fellow glaucoma patients (Wilcoxon signed-ranked test p<0.001, n=158) and felt their understanding of glaucoma had significantly improved (Wilcoxon signed-rank test p<0.001, n=142).The question and answer sessions were most valuable in airing patients’ fears and addressing concerns about involvement in research. The day resulted in the creation of the new Moorfields Glaucoma Research Community of over 100 patients who have formally registered an interest in being involved in research design, management, conduct and dissemination of results.
The Glaucoma Patient Day strengthened the bonds of partnership between patients, patients and carers, patient and healthcare professionals and between health care professionals. It has resulted in the creation of an invaluable research community focused on Glaucoma.
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