Abstract
Purpose :
In epidemiological studies age-related macular degeneration (AMD) is generally assessed via manual grading of fundus images – a complex, time-consuming procedure. Another method to derive information on disease status is participant self-report – presumably less effortful but known to be subjected to uncertainty. We set out to compare self-report information on AMD to medical records data from the participants’ primary ophthalmologists.
Methods :
In the population-based AugUR cohort study, recruiting individuals aged 70+, self-report of any AMD was derived via interview-based questionnaire. Participants were also asked for their primary ophthalmologist and for consent to contact them. An online questionnaire was then sent to the ophthalmologists, asking for AMD diagnosis in their medical records (including early or neovascular/dry late AMD stage). Self-report at the participants’ last study center visit was compared to records data and a timeline was generated, bringing together the date of last study center visit, the date of last visit at ophthalmologist, and the date of first AMD diagnosis.
Results :
Self-report information and primary ophthalmologist records data on AMD were available for 1471 AugUR participants. For 74% there was an ascertained agreement (111 individuals with any AMD diagnosis reported by both, participant and ophthalmologist; 978 participants without AMD reported by both). First diagnosis of AMD was documented by the ophthalmologist after the study center visit for another 156 participants (i.e. possible conversion to AMD in the meantime). Among the 226 persons (16%) with disagreeing information, 31 were over-reporters (i.e. they self-reported AMD but no diagnosis was documented by the ophthalmologist) and 195 were under-reporters (i.e. vice versa). Interestingly, for 166 of those 195 under-reporters, ophthalmologist records documented early AMD stages.
Conclusions :
Self-report information on AMD could be confirmed via primary ophthalmologist records data for three-quarters of study participants. In cases of disagreement, under-reporting was most common, and ophthalmologists had mostly documented early AMD. This might indicate that the primary ophthalmologist might not always communicate minor disease features like drusen as “AMD” to their patients.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.