Utilisation of patient‐centred outcome measures in age‐related macular degeneration research and clinical practice: A systematic review

Abstract Background To identify the utilisation, type, and psychometric properties of patient‐centered outcome measures (PCOMs) associated with the performance‐based assessment of visual function (VF) in age‐related macular degeneration (AMD) in clinical care and research. Methods A systematic literature search identified studies, available in English, that used PCOMs to assess VF in patients with any AMD severity, published from January 2015 to November 2023. Two researchers screened studies for quality using the Mixed Methods Appraisal Tool (MMAT) 2018 and assessed the psychometric properties of the PCOMs with the guidance of Consensus‐based Standards for the selection of health Measurement Instruments (COSMIN). Results Of 514 studies shortlisted in the literature, 31 were eligible with the majority (77.4%) fulfilling all the MMAT criteria, indicating good quality. The most used PCOM was reading (14/31 = 45.1%), with 5 of the 14 studies (35.7%) showing that the increasing severity and/or progression of AMD were associated with a worsening reading ability. AMD also negatively affected mobility and physical activity levels (7/31 = 22.6%), and visual search and exploration (4/31 = 12.9%). Based on the COSMIN checklist, apart from reading and physical activity measured with the accelerometer, the other PCOMs had ‘inadequate’ psychometric properties. Conclusions Limited published studies include PCOMs as an assessment of VF in AMD patients. Apart from reading, there is a lack of robust validation data to support the widespread use of other PCOMs. Hence, well‐designed, robustly validated, and simple to use PCOMs are required for more widespread implementation in AMD clinical care and research.