Do you want to know your future? A qualitative study of patient perspectives on knowing the risk of an incurable disease through ophthalmologic screening

Abstract

BackgroundDementia and Alzheimer's disease are currently incurable. Evolving technology is investigating ways to diagnose cognitive impairment earlier. In the field of ophthalmology, optical coherence tomography is emerging as a noninvasive, cost-effective means of predicting the risk of future cognitive impairment in patients. ObjectiveTo explore patient perspectives and determine patients’ preferences regarding the desire for knowledge of a future risk of cognitive impairment years before the onset of any symptoms. MethodsWe conducted a qualitative study using a five-question survey distributed to seniors aged 50 and older at a senior center. ResultsOf the 210 participants, 194 (92.4%) wanted to know if they had a risk of dementia or Alzheimer's disease 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 up to a high school education, 89.4% wanted to know the risk, while 94.8% of those with an education beyond high school wanted to know the risk. Of those employed in healthcare, 85.7% wanted to know about the risk of cognitive decline, and 93.1% of those employed outside of healthcare wanted to know the risk of cognitive decline. ConclusionsAn overwhelming majority of participants chose to know their future risk of cognitive impairment. Many cited “planning for the future” as the reasoning behind their choice. This study supports the idea that patients want to know more about their health risks and potential future diagnoses, so that they can make better informed decisions regarding their healthcare. The desire to know risk appears to be a universal concept, as there was not a statistically significant difference in opinion based on education or employment.