The glaucoma research foundation patient survey: patient understanding of glaucoma and its treatment.

PURPOSE: Determine patients' understanding of glaucoma and its treatment, their sources of information about glaucoma, their preferences for treatment, their experience with medication side effects, and their reasons for changing eye doctors.
DESIGN: Prospective, nonrandomized patient survey study.
METHODS: A questionnaire was developed and sent to the 22,000 subscribers of the Gleams newsletter who have glaucoma.
RESULTS: Questionnaires were returned by 4310 glaucoma patients. Most respondents received glaucoma information from their eye doctor. Only 28% of respondents reported having changed eye doctors for reasons related to their glaucoma. Of those who had, 60% cited poor communication as the reason. When queried about specific side effects associated with their medication, over 85% of responding patients were never or rarely bothered by headaches and eyelid darkening. Most respondents (67% and 55%, respectively) were rarely or never disturbed by red eye or burning and stinging. Most respondents understood the importance of intraocular pressure (IOP) lowering in glaucoma, and of those patients who expressed a preference, 92% reported that they would prefer the medication that lowers IOP the most, even if it caused red eye for a few weeks, over a medication that caused no red eye but did not get IOP as low.
CONCLUSIONS: Patients who subscribe to Gleams and responded to the survey rely most on their doctors for information about glaucoma and its treatment. Most understand the importance of maintaining low IOP to decrease the risk of vision loss, and most will tolerate temporary ocular side effects to achieve low IOP.