[Awareness for age-related macular degeneration in the population-based AugUR study : Comparison of participant self-report with medical records data from treating ophthalmologists].

Abstract

Background: Limited awareness of existing age-related macular degeneration (AMD) can negatively affect the use of appropriate healthcare. This is particularly true for the older population, who are most commonly affected by AMD.

Objectives: Analyzing the awareness of an existing AMD diagnosis in the older population. We evaluated AMD self-reports of participants of the population-based AugUR study aged ≥ 70 years in and around Regensburg using the records of treating ophthalmologists (BAA).

Materials and methods: AMD self-reports of the AugUR participants were collected at study inclusion using interview-based questionnaires. An AMD diagnosis documented by the BAA was recorded by the BAA using an online questionnaire. Consensus or dissent of the available information was determined by creating a timeline for the date of study inclusion, the date of the first documented AMD diagnosis by the BAA and the date of the last visit to the BAA.

Results: Self-report and BAA records on AMD were available for 1473 AugUR participants. Consensus was reached for 1270 individuals (86%). Of the 262 individuals with an existing BAA AMD diagnosis prior to study inclusion, 166 (63%) reported that they did not have AMD. In 137 of these 166 "underreporters", early stages of AMD were documented by the BAA.

Conclusion: Our results suggest that 63% of the older population with a BAA-AMD diagnosis are unaware of their AMD diagnosis. Most of these diagnoses represent early stages of AMD, which may not be communicated to patients as "AMD". Improved awareness, including early forms of AMD, could support preventative behavior by those affected.