Abstract
Purpose :
Geographic atrophy (GA) impairs visual function and patient quality of life (QoL). However, real-world data (RWD) on correlations between GA progression and functional decline are lacking. To address this gap, we performed a retrospective cohort analysis of patient notes to assess the feasibility of quantifying vision-related QoL (VR-QoL) and patient-reported outcomes (PRO) in GA.
Methods :
Documentation of VR-QoL was assessed in a random sample of GA patient notes from the American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight), a real-world electronic health record (EHR) dataset. Two cohorts were studied: (1) incident GA cases in 2019 analyzed on the date of diagnosis, and (2) prevalent GA cases first diagnosed in 2016 with notes at Year 3 of follow-up. Notes were searched for keywords associated with visual function, mental health, mobility, and independence. For frequently documented functional outcomes, clinical context was analyzed in 50 relevant notes per word.
Results :
The mean age of incident (n=101) and prevalent (n=97) GA patients was 80.6 years (SD=7.5) and 81.9 years (SD=6.3), respectively. 54% of incident and 62% of prevalent patients had subfoveal GA; 27 – 39% had concomitant glaucoma or cataract. The majority of patients were managed by retina specialists. Functional outcomes were rarely documented in patient notes: keywords “reading” and “driving” were found in <10% of records. “Low vision” was mentioned in <3% of notes, while “anxiety / depression” was noted in <2%. “Mobility / independence / disability” were not found. 64% of driving-related notes discussed trouble driving or night driving; 44% of reading-related notes indicated impairment, while 32% discussed reading glasses or aids. 74% of low-vision-related notes recommended a low vision consultation.
Conclusions :
VR-QoL and PROs are infrequently documented in the EHR by ophthalmologists. Sparse documentation limits the use of standalone EHR note data for QoL/PRO assessment. Retina specialists often refer GA patients to low vision specialists, who may be more likely to monitor and document changes in VR-QoL. While regulatory agencies have advocated for the use of patient-centered outcomes in clinical trials, real-world assessment of PROs is lacking, necessitating improved tools to collect RWD on patient QoL.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.