The Psychosocial Impact of Macular Degeneration

BACKGROUND: Age-related macular degeneration (AMD), the leading cause of irreversible blindness and low vision among the elderly, has not been well studied with regard to its impact on daily life. This study was designed to demonstrate the impact of AMD on quality of life, emotional distress, and functional level. PARTICIPANTS: The study sample consisted of 86 elderly adults (average age, 79 years) with AMD who were legally blind in at least 1 eye. Participants completed a battery of measures that included the Quality of Well-being Scale, the Instrumental Activities of Daily Living index, self-rated general health status, and the Profile of Mood States. RESULTS: Persons with AMD experienced significant reductions in key aspects of daily life. Their ratings for quality of life (average Quality of Well-being Scale score=0.581) and emotional distress (average Profile of Mood States total score=65.36) were significantly worse than those for similarly aged community adults and were comparable with those reported by people with chronic illnesses (eg, arthritis, chronic obstructive pulmonary disease, acquired immunodeficiency syndrome, and bone marrow transplants). Patients with AMD were also more likely than a national sample of elderly individuals to need help with daily activities. Visual acuity was related to ability to carry out daily activities (Instrumental Activities of Daily Living, r=0.28, P=.008). Quality of life ratings were significantly related to the ability to carry out daily activities (r=-0.38, P=.001), self-rated general health status (r=-0.21, P=.05), and emotional distress (Profile of Mood States total score, r=-0.25, P=.02). Individuals with a shorter period of perceived vision loss were more likely to report high levels of emotional distress (r=-0.24, P=.03) than those with a longer period of perceived vision loss. Further, those who were blind in 1 eye were even more significantly distressed than those who were blind in both eyes. CONCLUSIONS: Elderly persons with AMD causing legal blindness in 1 or both eyes have significant emotional distress and profoundly reduced quality of life and need help with key daily activities.