Abstract
Purpose :
In this study, we examined whether patients would want to know if they have an incurable disease and the reasoning behind wanting to know.
Methods :
A survey was used to assess patient preference. The survey asked questions regarding age, education, employment, and “If your eye doctor could use a machine to look into your eye and predict your risk of having dementia or Alzheimer’s in the future, would you want to know?” If respondents chose yes, we further asked reasoning behind their decision and provided three choices. We distributed the survey to those aged 50 and older at a local senior center. A total of 210 surveys were completed and collected.
Results :
Of the 210 participants, a total of 194 (92.4%) checked “yes” that they would want to know if they had a risk of dementia or Alzheimer’s using retinal scanning. Of those responding “yes,” 150 (77.4%) wanted to know so that they could plan for the future. Education did not appear to have an impact on decision making. Of those with a high school education and below, 89.4% wanted to know risk. Of those with an education greater than high school, 94.8% wanted to know risk. Regarding employment, 85.7% of those employed in healthcare wanted to know about risk of cognitive decline, while 93.1% of those employed outside of healthcare wanted to know risk of cognitive decline.
Conclusions :
In our study, participants overwhelmingly chose to know their risk of cognitive decline via ophthalmologic testing. Most participants chose to know for ability to plan for the future as their reasoning. When patients are in control of their health information and able to make informed decisions, this allows them to also make decisions about advance directives and healthcare power of attorney (POA) designations. This consensus applies regardless of education level and career, perhaps indicating the importance of making informed healthcare decisions and getting the quality of end-of-life care that patients prefer. OCT is showing promise as a non-invasive and cost-effective way to determine risk of cognitive decline in patients. Our study implies that patients are receptive to getting this testing, even if no cure is available.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.