An Australian study has found that although most participants with late-stage age-related macular degeneration (AMD) were aware of having AMD, the majority with early and intermediate AMD were not.
The findings mean studies that rely on disease self-report should be interpreted with caution, the researchers said.
those with early-stage AMD, less-advanced age, and good eyesight were less likely to be aware of having the disease
The study – by researchers from the Centre for Eye Health Australia, Monash University, and The Australian National University – said there continue to be many older Australians who have undiagnosed AMD. As well, those with earlystage AMD, less-advanced age, and good eyesight were less likely to be aware of having the disease.
“Large community-based studies can play an important role in capturing the level of ocular health in society and in identifying sectors of the population with additional eyecare needs,” the study authors said in an article published in Eye. 1
“However, ocular diagnostic testing is not always feasible in studies primarily designed to investigate non-ocular conditions and participant-report of eye disease may be the most practical way to obtain that information.”
SELF-REPORTS UNRELIABLE
The authors noted that self-report has previously been shown to be unreliable for AMD, but the extent to which diagnostic accuracy of self-reported AMD differs according to population characteristics had not been investigated in detail previously.
“People who reported having AMD were more likely to be older and more likely to be female than those who reported never being diagnosed.
“People who reported that they did not know if they had AMD were more likely to have been born overseas, have a primary language other than English, have fewer years of formal education, and live in an area with less advantage/more disadvantage,” the authors noted.
They said sensitivity for “any-stage AMD increased with increasing age and among those with poorer self-rated eyesight”, meaning people with AMD in these groups were more aware of having the disease than people with AMD who were either younger or had better vision.
Conversely, among those without AMD, older study participants with poorer self-rated eyesight were slightly more likely to falsely report having AMD than younger people with better vision.
“In this large prospective study, we found that asking participants whether a doctor had ever diagnosed them with ‘macular degeneration’ severely underestimated the prevalence of photograph-graded AMD.
“Although most people with vision-threatening late-stage AMD were aware of their condition, the overwhelming majority of people with early and intermediate AMD were not.”
EARLY AWARENESS IMPORTANT
The study authors said while the results suggested that many healthy older Australians are not undergoing regular eye examinations, “it is also possible that clinicians are not passing on information about early-stage disease when identified, or that individuals have not remembered or understood the information they have been given”.
“Upon diagnosis with the earlier stages of AMD, patients may be encouraged to take steps to slow disease progression such as quitting cigarettes, becoming more active, and taking dietary supplements.
“People with intermediate AMD, in particular, should be aware of their condition so they can closely monitor their vision for signs of progression and seek timely intervention if needed to prevent severe visual impairment. Thus, it is important for those affected to be aware of having AMD, even in its early stages,” the study authors said.
Reference
McGuinness, M.B., Robman, L., Hodgson, L.A.B. et al. Diagnostic accuracy of self-reported age-related macular degeneration in the ASPREE Longitudinal Study of Older Persons. Eye (2023). doi.org/10.1038/s41433-023-02754-y.
