Prioritising the Burden of Geographic Atrophy and Treatment Expectations: A Modified Nominal Group Technique Study with International Patient-Led Organisations.

Abstract

Aim: Geographic atrophy (GA), an advanced form of dry AMD, impacts over 5 million people globally and leads to progressive, irreversible vision loss. Current approaches to GA treatment aim to prevent and delay disease progression and preserve remaining vision. However, there is a debate on what constitutes a meaningful treatment outcome for patients. The aim of this study was to prioritise challenges associated with GA and desired treatment expectations from therapies using a modified Nominal Group Technique (NGT).

Methods and analysis: The study employed a modified nominal group technique (NGT), a widely used, validated, structured, facilitated group meeting to generate consensus. Representatives from patient-driven international research funding and support organizations were invited to participate. Two questions, one asking the impact of GA on patients and caregivers and another asking the treatment expectations of GA therapies were posed during the NGT session. Standard NGT methods were followed to generate top 10 challenges of living with GA and treatment expectation as perceived by the participants.

Results: The group ranked loss of independence (score - 32/50), difficulty recognizing faces (score - 28/50), impairment in daily living activities (scores - 11 to 22/50), and mental health issues (scores - 19/50 - anxiety, 21/50 - depression) as the most significant challenges faced by people living with GA. The group also prioritised stability of vision (score - 47/50), ability to recognise faces (score - 27/50) and one time therapy (score - 19/50) as their top expectations from GA treatments.

Conclusion: This study successfully used the NGT to prioritise challenges associated with GA and treatment expectation of GA therapies. The consensus results imply that meaningful progress in GA care will come from therapies that realistically aim to slow further vision loss, are convenient to use, and are delivered alongside psychosocial and low-vision support.