Heterogeneity of patient-reported outcome measures in clinical research.

Background: The use of patient-reported outcome measures (PROMs) in clinical research increases and use of heterogeneous instruments reflects how well diverse traits are captured by a medical specialty. In order to reflect the heterogeneity of current PROM use in ophthalmology, we reviewed the available literature.

Methods: The medical literature database Web of Science was searched for the most cited articles in clinical ophthalmology.

Patient acceptability of intravitreal complement inhibitors in geographic atrophy (GA): protocol for a UK-based cross-sectional study.

Introduction: Geographic atrophy (GA) is the advanced form of the non-neovascular ('dry') type of age-related macular degeneration (AMD). Previously untreatable, complement inhibitors delivered by regular intravitreal injections have recently been demonstrated to slow down the progression of GA lesions in phase 3 trials. One such treatment, Syfovre (pegcetacoplan), was approved by the US Food and Drug Administration in February 2023.

Tablet-based tests of everyday visual function in a diabetic macular oedema (DME) clinic waiting area: A feasibility study.

Purpose: (1) To assess the feasibility of conducting tablet-based vision tests in hospital clinic waiting areas; (2) To test the hypothesis that increasing severity of diabetic macular oedema (DME) is associated with the performance of tablet-based surrogates of everyday tasks and self-reported visual function.

Methods: Sixty-one people with mild (n = 28), moderate (n = 24) or severe (n = 9) DME performed two tablet-based tests of 'real-world' visual function (visual search and face recognition) while waiting for appointments in a hospital outpatient clinic. Participants also completed a tablet-based version of a seven-item, visual-functioning (VF-7) patient-reported outcome measure.

Test-Retest Variability and Discriminatory Power of Measurements From Microperimetry and Dark Adaptation Assessment in People With Intermediate Age-Related Macular Degeneration - A MACUSTAR Study Report.

Purpose: The purpose of this study was to assess test-retest variability and discriminatory power of measures from macular integrity assessment (S-MAIA) and AdaptDx.

Methods: This is a cross-sectional study of 167 people with intermediate age-related macular degeneration (iAMD), no AMD (controls; n = 54), early AMD (n = 28), and late AMD (n = 41), recruited across 18 European ophthalmology centers. Repeat measures of mesopic and scotopic S-MAIA average (mean) threshold (MMAT decibels [dB] and SMAT [dB]) and rod intercept time (RIT [mins]) at 2 visits 14 (±7) days apart were recorded.

Exploring patient acceptability of emerging intravitreal therapies for geographic atrophy: A mixed-methods study.

Background/objectives: The acceptability of emerging intravitreal therapies for patients with Geographic Atrophy (GA) is currently unknown. This study therefore aimed to investigate the extent to which regular intravitreal injections may be acceptable to GA patients.

Subjects/methods: Thirty UK-based individuals with GA secondary to age-related macular degeneration (AMD), recruited from two London-based hospitals, were interviewed in April-October 2021 regarding acceptability of new GA treatments.

Towards a Therapy for Geographic Atrophy: A Patient's Experience.

Purpose: Geographic atrophy (GA) is the advanced form of the non-neovascular (dry) type of age-related macular degeneration. Presently, GA cannot be treated. However, new therapies administered by intravitreal injection are in late-stage development.

Patient-reported outcome measures in ophthalmology: too difficult to read?

Objective: Patient-reported outcome measures (PROMs) are commonly used in clinical trials and research. Yet, in order to be effective, a PROM needs to be understandable to respondents. The aim of this cross-sectional analysis was to assess reading level of PROMs validated for use in common eye conditions.

Acceptability of intravitreal injections in geographic atrophy: protocol for a mixed-methods pilot study.

Introduction: Age-related macular degeneration (AMD) is a common cause of visual impairment, affecting central vision. Geographic atrophy (GA) is an advanced form of the non-neovascular (dry) type of AMD. Late-stage clinical trials suggest that intravitreal injections of novel therapeutics may slow down the rate of GA progression by up to 30% in 1 year, thus allowing people with GA to preserve central vision for a longer period.

Acceptability of a home-based visual field test (Eyecatcher) for glaucoma home monitoring: a qualitative study of patients' views and experiences.

Objectives: To explore the acceptability of home visual field (VF) testing using Eyecatcher among people with glaucoma participating in a 6-month home monitoring pilot study.

Design: Qualitative study using face-to-face semistructured interviews. Transcripts were analysed using thematic analysis.

Are Current Methods of Measuring Dark Adaptation Effective in Detecting the Onset and Progression of Age-Related Macular Degeneration? A Systematic Literature Review.

Introduction: Dark adaptation (DA) has been proposed as a possible functional biomarker for age-related macular degeneration (AMD). In this systematic review we aim to evaluate current methodology used to assess DA in people with AMD, the evidence of precision in detecting the onset and progression of AMD, and the relationship between DA and other functional and structural measures.

Methods: MEDLINE, EMBASE, CINAHL, AMED, PsycINFO, PsycARTICLES were searched for studies published between January 2006 and January 2020 that assessed DA in people with AMD.

Novel computer-based assessments of everyday visual function in people with age-related macular degeneration.

Purpose: To test the hypothesis that the performance in novel computer-based tasks of everyday visual function worsens with disease severity in people with non-neovascular age-related macular degeneration.

Methods: Participants with and without non-neovascular age-related macular degeneration (≥60 years, minimum logMAR binocular visual acuity 0.7) performed a series of standard visual function tests and two novel computer-based tasks.

Only eye study 2 (OnES 2): 'Am I going to be able to see when the patch comes off?' A qualitative study of patient experiences of undergoing high-stakes only eye surgery.

Objectives: Ocular surgery is a source of significant concern for many patients, especially in high-stakes circumstances. The purpose of this study was to explore patient experiences of undergoing surgery on their only-seeing eye.

Design: A qualitative investigation using semistructured face-to-face interviews.

Refinement and preliminary evaluation of two tablet-based tests of real-world visual function.

Purpose: To describe, refine, evaluate, and provide normative control data for two freely available tablet-based tests of real-world visual function, using a cohort of young, normally-sighted adults.

Methods: Fifty young (18-40 years), normally-sighted adults completed tablet-based assessments of (1) face discrimination and (2) visual search. Each test was performed twice, to assess test-retest repeatability.

The Only Eye Study (OnES): a qualitative study of surgeon experiences of only eye surgery and recommendations for patient safety.

Objective: Performing surgery on patients with only one seeing-eye, where complications may result in catastrophic vision loss, presents unique challenges for the ophthalmic care team. There is currently no evidence regarding how surgeons augment their care when treating only eye patients and no guidelines for how these patients should be managed in hospital eye services. This study aimed to explore ophthalmic surgeons' experiences of only eye surgery and perceptions of current practice.

How do different lighting conditions affect the vision and quality of life of people with glaucoma? A systematic review.

This article is a systematic review of evidence regarding the impact of different lighting conditions on the vision and quality of life (QoL) of people with primary open-angle glaucoma (POAG). A systematic literature search was carried out using CINAHL, MEDLINE, PsycARTICLES, PsycINFO, Embase, and Ovid Nursing Database for studies: published up to April 2019; including people diagnosed with POAG; and assessing visual function or QoL in response to changing lighting/luminance levels or glare. Two researchers independently screened studies for eligibility.

Feeling the pressure: a cross-sectional study exploring feasibility of a healthcare Pop-Up for intraocular pressure measurements in shopping centres in England.

Objectives: To test the hypothesis that a shopping centre Pop-Up health check combining an intraocular pressure (IOP) check with a general health check (blood pressure (BP)) is more readily accepted by the general public than an IOP check only. We investigate public awareness of IOP compared with BP and the feasibility of measuring IOP in large numbers in a Pop-Up.

Design: A cross-sectional study using a tailor-made healthcare Pop-Up.

Correction: 'You've got dry macular degeneration, end of story': a qualitative study into the experience of living with non-neovascular age-related macular degeneration.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Measuring dynamic levels of self-perceived anxiety and concern during simulated mobility tasks in people with non-neovascular age-related macular degeneration.

Background/aims: To assess response to real-world mobility scenarios in people with dry age-related macular degeneration (AMD) using a computer-based test.

Methods: Participants were shown 18 point-of-view computer-based movies simulating walking through real-world scenarios, and pressed a button during scenes which would cause them self-perceived anxiety or concern in their day-to-day life. Button pressure was recorded throughout.

'You've got dry macular degeneration, end of story': a qualitative study into the experience of living with non-neovascular age-related macular degeneration.

Background/objectives: To investigate the impact of non-neovascular (dry) age-related macular degeneration (AMD) on the person with respect to diagnosis, vision loss and coping strategies.

Subjects/methods: Volunteers with dry AMD with a range of disease severity were given an eye examination and asked to describe aspects of their experience with dry AMD in a semi-structured interview. Interviews were audio-recorded, transcribed, and subjected to Framework analysis.

Healthy shopper? Blood pressure testing in a shopping centre Pop-Up in England.

Background: Improving detection of elevated blood pressure (BP) remains a public health need. We present results from a Pop-Up health check stationed in shopping centres in England. We hypothesise the rate of case detection is related to measurable 'unhealthiness' of the shopping centres.

Determining Optimal Test Parameters for Assessing Dark Adaptation in People With Intermediate Age-Related Macular Degeneration.

Purpose: The primary aim was to determine optimal test conditions for evaluating dark adaptation in intermediate age-related macular degeneration (iAMD) in order to minimize test time while maintaining diagnostic sensitivity.

Methods: People with AMD and age-similar controls were recruited (aged >55 years). Rod intercept time (RIT) was assessed after a 76%, 70%, and 65% rhodopsin bleach at 5° eccentricity and 76% and 70% bleach at 12°.

The effect of non-neovascular age-related macular degeneration on face recognition performance.

Purpose: There is a well-established research base surrounding face recognition in patients with age-related macular degeneration (AMD). However, much of this existing research does not differentiate between results obtained for 'wet' AMD and 'dry' AMD. Here, we test the hypothesis that face recognition performance is worse in patients with dry AMD compared with visually healthy peers.