At least 80% of patients with dry age-related macular degeneration (AMD) experience difficulty completing daily life activities, dependency on others, blurred vision, and more, according to findings published in Ophthalmology and Therapy.
To expand the base of literature on the AMD patient experience, researchers performed a targeted review of 29 articles, as well as interviews with 5 clinicians and 20 patients. Conceptual models were created and then compared based on the findings of both the literature and the interviews, and the most salient signs and symptoms, as well as immediate and general impacts, were noted.
The researchers selected the articles for review using health-related quality of life domains for dry AMD using the PubMed, Cochrane, PsychINFO, and Embase databases. Patients interviewed were aged 50 years or older (mean age 69 years), had a diagnosis of dry AMD in at least 1 eye, and had visual acuity of 20/40 or lower in both eyes.
Of the signs and symptoms characteristic of dry AMD in the articles reviewed, blurred vision was reported by all 20 patients as very significant. Other signs mentioned in interviews, though not in the articles, included loss of central visual field/central blind spot; difficulty seeing in low-light environments; poor dark adaptation; and poor contrast vision or things appearing washed out.
Of the immediate impacts of dry AMD listed in the articles, the ones most important in patient interviews, reported by at least 80% of participants across all visual acuity severities, were difficulty driving; difficulty reading; worry about disease and the future, and stress and anxiety, and fear of the disease progressing was a new impact reported. Other salient symptoms included difficulty completing activities of daily living, frustration and dependency on others.
The final conceptual model included 35 signs, symptoms, and impacts of dry AMD, and 19 of them were mentioned by at least 50% of interviewees and were considered disturbing. In the “general impacts” section of the final model, salient points included the inability or limitation in participation of social and leisure activities; depression; less productivity at work/unemployment/having to switch jobs; and financial difficulties.
The researchers explain that this conceptual model can be used in the future to enhance regulatory decision-making and serve as a resource for regulators, payers, clinicians, and patients.
“As the first known conceptual model for dry AMD, the inclusion of signs, symptoms, and immediate and general impacts will likely aid in the development of dry AMD-specific patient-reported outcomes instruments reflecting a unique dry AMD patient experience,” the study concludes. “Furthermore, it offers an opportunity to better understand how a treatment for dry AMD may benefit patient quality of life.”
Schultz N, Braunack-Mayer L, Schwartz J, et al. The patient experience: symptoms and impact of dry age-related macular degeneration. Ophthalmol Ther. 2021;10(1):151–164. doi:10.1007/s40123-020-00325-y