Identifying Outcomes That Are Important to Patients with Ocular Hypertension or Primary Open-Angle Glaucoma: A Qualitative Interview Study

Purpose: To explore patients’ perspectives and experiences living with glaucoma and identify important benefits and risks that patients consider before electing for new glaucoma treatments, such as minimally invasive glaucoma surgery (MIGS) devices. Design: Semi-structured, in-person qualitative interviews with patients seen at the Johns Hopkins Wilmer Eye Institute. Participants: Adults older than 21 years of age with suspected or who were diagnosed with ocular hypertension or mild to moderate primary open-angle glaucoma (POAG) (e.g., eligible for treatment with a MIGS procedure) presenting to a glaucoma clinic in Baltimore, Maryland, between May and December 2016. Methods: We conducted in-person interviews with patients recently diagnosed with ocular hypertension or POAG. We focused on considerations patients take into account when deciding between different treatments. We used the framework approach to code and analyze the qualitative data. Considerations of special interest to us were those that can be translated into outcomes (or end points) in clinical trials. Main Outcome Measures: Patients’ perspectives concerning outcomes that matter to them when managing ocular hypertension or POAG. Results: A total of 10 male and 15 female patients participated in our study. The median participant age was 69 years (range, 47–82 years). We identified outcomes that patients expressed as important, which we grouped into 4 thematic categories: (1) limitations in performing specific vision-dependent activities of daily living; (2) problems with general visual function or perceptions; (3) treatment burden, including ocular adverse events; and (4) intraocular pressure (IOP). All 25 participants expressed some concerns with their ability to perform vision-dependent activities, such as reading and driving. All participants also had an opinion about IOP, and among those currently taking ocular hypotensive eye drops, all recognized the relationship between eye drops and IOP. Conclusions: We have identified outcomes that matter to patients who are deciding between different treatments for ocular hypertension and POAG, such as the ability to drive or maintain mobility outside the home. These outcomes will be important in future evaluations of new treatments for glaucoma.