Objectives: Visual impairment has been linked to a decline in quality of life (QoL), but limited research has been conducted on real-world visual and humanistic outcomes in patients diagnosed with retinal diseases, including neovascular age-related macular degeneration (nAMD) and diabetic macular edema (DME).

Methods: A systematic literature search was conducted using Medline, Embase, and Cochrane between 2011−2021 that quantified ≥1 humanistic and patient-reported outcome of interest, including vision-related QoL (VRQoL), QoL, activities of daily living (ADL), productivity, and indirect costs/financial burden for vision-impaired patients with nAMD or DME in real-world/observational studies. Two researchers independently screened studies for eligibility.

Results: Among 483 publications identified, 9 met criteria for nAMD (n=5) and DME (n=4), across Europe (n=5), North America (n=2), and Asia (n=2), which included 615 nAMD and 958 DME patients in total. Most studies reported low scores on VRQoL measures and subscales, including general vision, distance activities, driving, reading fine prints, reading bills, social functioning, dependency, and ADL impairment among nAMD (n=5) and DME (n=1) patients. One study reported substantial VRQoL decline after development of advanced nAMD (P<0.001). Two studies reported that contrast sensitivity and visual acuity are positively correlated with VRQoL among nAMD patients (P<0.01). A significant cost related to disability and employee absenteeism was reported among patients with DME versus no DME (P<0.01). Another study found bilateral versus unilateral DME caused a significant increase in total health care burden and costs of permanent time off work (P=0.01).

Conclusions: Although limited, the literature identified points to different aspects of burden related to nAMD and DME on QoL, work productivity, and cost. Smaller sample size, heterogeneity in study designs, patient population, and outcome measures limit interpretability and cross-trial comparisons. Further research on the impact of humanistic burden of nAMD and DME, including how newer treatments may impact that burden, is warranted.