Abstract
Purpose :
Age-related macular degeneration (AMD) is a major public health concern with approximately 200 million people currently living with the condition globally, out of which approximately 10 million are living with the advanced form of the disease (neovascular AMD (nAMD) or Geographic Atrophy (GA)). The purpose of this study is to investigate the humanistic burden of advanced AMD among patients and caregivers.
Methods :
Two cross-sectional surveys (one each for patients and caregivers) were conducted in Bulgaria, Germany, and the USA. The survey questionnaire for patients included items to assess the impact of the disease on work, driving, mental health, and hobbies. Further items explored the frequency of visits to eye appointments and falls or accidents. The questionnaire for the caregivers included items to assess the impact of the disease on their work, mental health, and activities of daily living.
Results :
Data were examined from 128 patients (female, 62%) and 61 caregivers (female, 70%). 38% of patients reported that the disease has had an impact on their work (20% reduced working hours, 15% retired early). 3/5th of the patients reported that the disease took a toll on their driving abilities. Almost 4/5th of the nAMD patients reported visiting an eye care appointment once or twice a month whereas over 3/4th of the GA patients reported visiting the eye care appointment once or twice a year. Over a third of the patients reported encountering a fall, an accident, or a burn in the past year. 44% of the patients reported anxiety, and 33% reported depression.
Grocery shopping (75%) and providing transportation to and from medical appointments (73%) were the two most reported types of care provided by caregivers. Over 1/5th of the caregivers reported that they have taken time off work in the past 4 weeks to take care of the patient. 26% of the caregivers reported anxiety and 5% reported depression due to caregiving responsibilities. 46% reported that their responsibilities have impacted their activities of daily living.
Conclusions :
The study suggests that the humanistic burden of advanced AMD in patients and caregivers is immense. Patients experience several emotional and welling issues along with losing their independence. Caregivers also face significant challenges, with many reporting taking time off work and experiencing well-being issues.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.