Study puts spotlight on gaps in AMD communication

Research highlights disparity between the information ECPs say they share, and the knowledge that patients report receiving

An elderly woman rests her hands in her lap with the palms facing each other

Survey results have revealed a gap in the information that eye care professionals (ECPs) say they provide following a diagnosis of macular disease compared with the information that patients report receiving.

The study, which was published in Eye, involved a survey of 122 ECPs from both primary and secondary care. 

A group of 214 patients with wet age-related macular degeneration (AMD), dry AMD and diabetic macular oedema also answered questions about their care.

While 85% of ECPs surveyed reported ‘always’ or ‘often’ sharing information about macular disease at the point of diagnosis, only 56% of patients said that they had received a clear diagnosis, including the name of their condition.

When asked about the role of charities, 91% of ECPs ‘agreed’ or ‘strongly agreed’ that signposting to support organisations leads to better outcomes for people with macular disease.

However, fewer than one in five patients (17%) reported receiving information about support organisations or charities at the point of diagnosis.

Less than half (45%) of patients said they received an explanation of what may happen to their vision in the future.

“One key outcome of this study was the disparity between patient recall of information provision compared with ECPs signposting perceptions and stated behaviours,” the study authors highlighted.

Considering the potential reasons for the disparity, the authors shared that time constraints and a fear of overburdening patients may create barriers to ECPs effectively relaying information.

The researchers added that patients may also experience challenges accessing information – for example, if they feel overwhelmed at the point of diagnosis or struggle to read leaflets.

“This research highlights a clear need to optimise ECP communication around diagnosis, as well as more effective signposting of services provided by patient support organisations,” the authors concluded.