Study Finds a Need for Better Patient-Reported Outcome Measures in AMD

When selecting patient-reported outcome measures for randomized controlled trials for AMD, it’s important to select tools that align with the target population and the functional domains that are most likely to change. For example, patient populations with intermediate or earlier AMD with preserved vision may require instruments that obtain low-luminance and contrast-related data or activity difficulties to avoid ceiling effects and detect meaningful changes. For patients with larger expected visual acuity changes, such as those with nAMD, the NEI VFQ remains appropriate. Photo: NEI. Click image to enlarge. Age-related macular degeneration (AMD) has widespread detrimental effects on many aspects of patients’ lives, from reading and mobility to their independence and psychosocial wellbeing. Clinical testing can measure some aspects of the disease, but to fully understand AMD’s impact, other metrics are needed. Patient-reported outcome measures (PROMs) help fill this gap with their standardized assessments of symptoms, functional limitations and well-being. However, these self-reported tests may not fully align with current methodological standards or be regularly incorporated into studies, researchers say. To get a more complete picture of PROM use in AMD evaluation, researchers performed a review of the literature, recently published in Ophthalmology Science. Here are their findings:The researchers searched four major databases from inception to late 2023, with a targeted update for relevant publications from 2024 to 2025. Eligible studies included randomized controlled trials with at least 20 participants with AMD that reported both baseline visual acuity and baseline vision-related PROM data. The researchers also made note of several key PROM characteristics, including instrument selection, scoring, baseline distributions, subgroup reporting and laterality context.A total of 38 studies met inclusion criteria, covering early to late-stage AMD. The researchers found 11 different PROM instruments used in the trials:The National Eye Institute Visual Function Questionnaire (NEI VFQ) family was most often used (78.9%), particularly the VFQ-25 (n=17).The researchers noted that baseline patient-reported functional status varied by disease stage. Early and intermediate AMD cohorts reported higher scores (75.3 to 89.1), while neovascular AMD patients had lower and more heterogeneous scores (59.1 to 77.9).Subscale/domain reporting was inconsistent across studies, with many including only composite scores or a limited subset of subscales.Baseline PROM results weren’t reported by subgroup. This prevented comparisons across patient populations. The researchers also noted that visual function reporting was incomplete. Only 13% of studies reported both better- and worse-seeing eyes.The researchers concluded that in randomized controlled AMD trials, “the interpretive value of vision-related PROMs is constrained by inconsistent baseline reporting, heterogeneity in NEI VFQ versions and operationalization, limited reporting of domains and subscales, and insufficient documentation of treated-eye and fellow-eye status.”They explained in their paper that “Enhanced consistency in stage-appropriate PROM selection and reporting, coupled with routine documentation of laterality and binocular context, would substantially improve interpretability and increase the potential for evidence synthesis and patient-centered evaluation of interventions.”Click here for the journal source. Bodmer NS, Guezelguan M, Huber L, et al. Vision-related patient-reported outcomes in randomized controlled trials of age-related macular degenerations: a systematic review. Ophthalmology Science 2026:101308. [Epub June 30, 2026]. This article was developed by the editorial staff in conjunction with experts in the field. In the process, AI may have been among the editorial tools used to meet the goals of human editors, who approved all content.