Why Patients With Glaucoma Lose Vision: The Patient Perspective.

PURPOSE

To explore why glaucoma patients believe that glaucoma continues to cause vision loss despite the availability of effective treatment.

METHODS

Nine focus groups were conducted in 3 geographically and ethnically diverse areas of the United States (Los Angeles, CA; Rochester, MN; Durham, NC) that included 56 participants, 31 with poor vision and 25 with good vision. Content analysis was used to identify important themes. Semiquantitative analysis was used to measure the frequency of each theme.

RESULTS

A total of 474 relevant comments were made in the 9 focus groups. Focus groups elicited 305 comments about barriers to glaucoma management including issues with adherence (30%), the doctor-patient relationship (21%), knowledge about glaucoma (19%), personal support systems (19%), and barriers to health care delivery such as cost and insurance (11%). A total of 101 comments were made regarding feelings about glaucoma and 58 comments were made regarding beliefs about disease and treatment.

CONCLUSIONS

These focus groups brought up many issues surrounding barriers to glaucoma treatment, perceived susceptibility to glaucoma, perceived benefits to treatment, and the emotional response to living with glaucoma. There is a need to create a more comprehensive chronic disease management approach for patients with glaucoma to address both the concrete and emotional issues identified in these focus group discussions.