OBJECTIVES: Patients with age-related macular degeneration (AMD) experience blurred vision which progresses to blindness with age. This condition negatively impacts patient’s health-related quality of life (HRQoL) and also increases caregiver burden. The objective is to summarize HRQoL studies in AMD including a description of the instruments and their psychometric properties.

METHODS: The literature search was conducted from 2015 till January 2021 using two electronic databases—PubMed and EBSCOhost. The search strategy included all international studies that reported the use of HRQoL instruments and their psychometric properties in adult AMD population. Clinical studies, economic evaluations, reviews, and commentaries were excluded from the review.

RESULTS: A total of seven studies were identified that assessed HRQoL in AMD. Only one study was conducted in the United States and the rest were from six different countries. Different disease classifications were utilized—wet and dry AMD (n=2) and early, intermediate, and late-stage AMD (n=3). A few studies (n=5) utilized unilateral or bilateral patients. Disease-specific and generic instruments utilized in patients and caregivers included the National Eye Institute 25-Item Visual Function Questionnaire (NEI VFG-25), Visual Function Questionnaire (VFQ), Impact Vision Impairment Questionnaire (IVI), Macular Disease Dependent Quality of Life Questionnaire (MacDQoL), Low Luminance Deficit LLD, EuroQoL-5D (EQ-5D), Short Form-12 (SF-12), and Caregiver Reaction Assessment (CRA) scale. Majority of studies (n=5) utilized NEI VFG-25 instrument and only one study reported the psychometric properties of the HRQoL instrument (IVI). One study reported the impact of AMD on caregiver burden and two studies reported the effect of ranibizumab on HRQoL.

CONCLUSIONS: The importance of measuring HRQoL in patients and caregivers in AMD has been reported in several countries. The assessment of physical, psychological, and emotional aspects of AMD can assist providers and policymakers in better understanding the needs and providing optimal care to both patients and caregivers.