Tamsin Callaghan

Objectives Age-related macular degeneration (AMD) is a progressive condition which can lead to irreversible sight impairment. While there is no cure for early or intermediate AMD, modification of lifestyle risk factors (smoking, dietary changes and vitamin supplementation) can slow down disease progression. Although professional guidelines recommend that clinicians provide lifestyle advice to patients, evidence suggests that this may not be provided consistently. This study aimed to investigate the experiences of people with AMD receiving lifestyle modification advice in secondary eye care to determine the current status of advice provision and to explore patient opinions regarding the optimal mode of communication. Design Multimethods survey study. Setting Primary and secondary care centres in England. Participants To be included in the study, participants had to have a diagnosis of AMD in at least one eye. This could be of any stage (early, intermediate or late according to the Beckman classification system). Participants were excluded if they had bilateral end-stage AMD (fovea involving geographic atrophy or scarring secondary to neovascular AMD), if they had received more than three rounds of anti-vascular endothelial growth factor (VEGF) injections in their first diagnosed eye or if they had other ocular conditions affecting the retina or optic nerve. Recruitment took place via 10 hospital clinics and 24 optometry practices. Intervention Eligible patients were sent a survey to complete online or on paper, including three sections: demographic, historical experiences of lifestyle advice and experiences at the most recent appointment. Participants were asked to complete the survey within three weeks of attending their appointments. Results Exploratory descriptive analysis was conducted of quantitative data. Qualitative data were thematically analysed using NVivo V.12. 404 participants were included in the study. Most were female (n=244; 60.4%), recruited via hospital clinics (n=398; 98.5%) and diagnosed within the last year (n=152; 37.6%). The majority reported never having received lifestyle modification advice from an eye care practitioner (ECP) (n=209, 51.7%). Of those that reported receiving advice prior to their most recent appointment (n=125), 63% reported making subsequent changes. 300 participants (84% of respondents) reported not receiving advice at their most recent appointment. Only 25% were asked about their current smoking habits and only 2 (8.3%) of current smokers recalled being given advice to stop smoking. The most common type of advice received was regarding diet. A combination of verbal and written information was the preferred mode of advice provision, yet only 9.4% were given written advice. Conclusions Despite the guidelines, the findings from this study show that advice is not consistently being provided to patients in their preferred formats. A clearer framework of patient informed guidelines is needed to improve lifestyle advice provision by ECPs.

Background: Charles Bonnet Syndrome (CBS) is characterised by visual hallucinations in individuals with visual impairment, which can negatively impact emotional wellbeing. Educational interventions may help improve understanding and coping. Objective: This study investigated whether an educational podcast on CBS could enhance emotional wellbeing and promote more positive attitudes toward hallucinations. Design: Pre–post exploratory study. Methods: Participants were recruited via charities and social media as part of a larger study on the psychosocial impact of CBS. A baseline survey collected data on CBS symptom characteristics, the perceived impact of hallucinations (rated on a 5-point Likert scale from very negative to very pleasant) and level of negative affect (negative emotional wellbeing), assessed by the Positive and Negative Affect Schedule (PANAS). Participants then engaged with an educational podcast about CBS over a 3-week period. A follow-up survey assessed changes in emotional wellbeing, attitudes toward hallucinations, and symptom perception. Results: Fifty-four individuals with CBS (76% female; 70% aged >65 years) received the podcast. After the podcast intervention, 22 participants (41%) reported a less negative impact of CBS on their lives. There was a statistically significant improvement in perceived CBS impact ( p < 0.01) and a statistically significant reduction in negative emotional wellbeing ( p = 0.02). Conclusion: The educational podcast intervention was associated with improved emotional wellbeing, reflected in statistically significantly reduced negative affect and a decreased perceived burden of CBS. These findings suggest that educational podcasts may serve as a valuable tool for supporting the emotional health of individuals with CBS.

Introduction: Patient and Public Involvement and Engagement (PPIE) is now considered essential to the delivery of high‐quality, patient‐centred and translational research. However, despite widespread recognition of this, PPIE remains poorly understood, inconsistently utilised and inadequately reported. Objective: This study aimed to report, discuss and analyse the PPIE activities undertaken within 3DPiPPIn—a randomised control trial investigating the feasibility of using 3D printing to develop customised masks for patients receiving positive airway pressure (PAP) therapy. Emphasis was placed on analysing the wider impacts of these activities, including the impact on Patient Advisory Group (PAG) members. Methods: Data were collected from PAG members via 1:1 semi‐structured interviews, which took place either face‐to‐face or online as per members' preference. Interviews were recorded, transcribed verbatim and analysed in NVivo using Braun and Clarke's Six‐Phase Reflexive Thematic Analysis. Results: Three PAG members were interviewed; two were conducted remotely via Microsoft Teams, while the third took place face‐to‐face. Analysis resulted in the identification of three themes: ‘Disparate perceptions of PPIE influence in research’, ‘Empowered and enriched through PPIE’ and ‘Navigating the evolving experience and hurdles of PPIE’. PAG members described their influence on the trial as variable, feeling their involvement was impactful in some instances and insignificant in others. Despite this, they unanimously agreed that PAG involvement had a positive personal impact and that their experiences of PPIE were diverse and dynamic. Within the subtheme ‘Supports and stumbling blocks for PPIE’, members reflected on facilitators and barriers to PPIE. For example, the relaxed environment created by the Principal Investigator was seen to have promoted open discussion, while personal challenges sometimes diverted their focus from their role as a PAG member. Conclusion: This Reflexive Thematic Analysis explored the impact of PPIE on the 3DPiPPIn trial from the perspective of its PAG members. It exemplifies PPIE best practice and highlights areas for improvement to other researchers, advocating for meaningful rather than tokenistic PPIE. By encouraging excellence in PPIE, this report could enhance public engagement in research and, by demonstrating the impact and importance of quality PPIE, could inspire funders to ensure the provision of adequate PPIE resources. Trial Registration: Embedded within the 3DPiPPIn trial (ISRCTN 74082423).

Implementation of co-produced training and resources can improve the experience and safety of autistic children in a paediatric emergency department.

Objective To investigate the views, hopes and concerns of patients living with glaucoma and age-related macular degeneration (AMD) regarding vision home-monitoring. Design Qualitative study using focus groups and questionnaires. Participants were given three disease-relevant home-monitoring tests to try. The tests consisted of three visual field tests for the glaucoma groups (Melbourne Rapid Fields, Eyecatcher, Visual Fields Fast) and three acuity and/or contrast-sensitivity tests for AMD groups (Alleye, PopCSF, SpotChecks). Focus group data were thematically analysed. Setting University meeting rooms in London, UK. Participants Eight people with glaucoma (five women, median age 74) and seven people with AMD (four women, median age 77) volunteered through two UK-based charities. Participants were excluded if they did not self-report a diagnosis of glaucoma or AMD or if they lived further than a 1-hour travel distance from the university (to ensure minimal travel burden on participants). Results Six themes emerged from focus groups, the two most frequently referenced being: ‘concerns about home-monitoring’ and ‘patient and practitioner access to results’. Overall, participants believed home-monitoring could provide patients with a greater sense of control, but also expressed concerns, including: the possibility of home-monitoring replacing face-to-face appointments; the burden placed on clinicians by the need to process additional data; struggles to keep up with requisite technologies; and potential anxiety from seeing worrying results. Most devices were scored highly for usability, though several practical improvements were suggested. Conclusion Patients with mild-to-moderate glaucoma/AMD expect vision home-monitoring to be beneficial, but have significant concerns about its potential implementation.

There is currently no treatment for early/intermediate Age-related Macular Degeneration (AMD) but Eye Care Professionals (ECPs) are recommended to advise patients about modifiable lifestyle factors, including dietary changes, that can slow disease progression. The aim of this review was to understand advice currently given to patients with AMD by ECPs and to evaluate evidence regarding patient compliance. A systematic review was conducted of literature published in electronic databases: CINAHL, MEDLINE, PsycINFO, PyscARTICLES, EMBASE, AMED. Methods followed PRISMA guidelines (PROSPERO registration number: CRD42020223724). Twenty-four reports were eligible for inclusion, 12 focused on ECP experience, 7 on patient experience, and 6 on impact of advice (one paper reported on the ECP and patient experience). Studies reported that a substantial proportion of patients did not recall receiving lifestyle modification advice from their ECP (57.95%, range 2–95% across patient based studies). Practitioners were most likely to provide advice about nutritional supplements (80%, range 67–93% across ECP studies), and least likely about smoking (44%, range 28–71% across ECP studies), however supplements advised did not always comply with evidence-based guidelines. The main reason for patients not following lifestyle advice was lack of provision by the ECP (54.5%, range 21–94% across studies on the impact of advice). The review highlighted a need for more studies to understand patient preferences for receiving advice and research on ECP perceived barriers to advice provision.

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. Setting Participants were recruited in the UK through an advertisement in the International Glaucoma Association (now Glaucoma UK) newsletter. Participants Twenty adults (10 women; median age: 71 years) with a diagnosis of glaucoma were recruited (including open angle and normal tension glaucoma; mean deviation=2.5 to −29.9 dB). Results All participants could successfully perform VF testing at home. Interview data were coded into four overarching themes regarding experiences of undertaking VF home monitoring and attitudes towards its wider implementation in healthcare: (1) comparisons between Eyecatcher and Humphrey Field Analyser (HFA); (2) capability using Eyecatcher; (3) practicalities for effective wider scale implementation; (4) motivations for home monitoring. Conclusions Participants identified a broad range of benefits to VF home monitoring and discussed areas for service improvement. Eyecatcher was compared positively with conventional VF testing using HFA. Home monitoring may be acceptable to at least a subset of people with glaucoma.

Purpose: To assess accuracy and adherence of visual field (VF) home-monitoring in a pilot sample of glaucoma patients. Design: Prospective longitudinal observation. Methods: Twenty adults (median 71 years) with an established diagnosis of glaucoma were issued a tablet-perimeter (Eyecatcher), and were asked to perform one VF home-assessment per eye, per month, for 6 months (12 tests total). Before and after home-monitoring, two VF assessments were performed in-clinic using Standard Automated Perimetry (SAP; 4 tests total, per eye). Results: All 20 participants could perform monthly home-monitoring, though one participant stopped after 4 months (Adherence: 98%). There was good concordance between VFs measured at home and in the clinic ( r = 0.94, P < 0.001). In 21 of 236 tests (9%) Mean Deviation deviated by more than ±3 dB from the median. Many of these anomalous tests could be identified by applying machine learning techniques to recordings from the tablets’ front-facing camera (Area Under the ROC Curve = 0.78). Adding home-monitoring data to 2 SAP tests made 6 months apart reduced measurement error (between-test measurement variability) in 97% of eyes, with mean absolute error more than halving in 90% of eyes. Median test duration was 4.5 mins ( Quartiles : 3.9−5.2 mins ). Substantial variations in ambient illumination had no observable effect on VF measurements ( r = 0.07, P = 0.320). Conclusions: Home-monitoring of VFs is viable for some patients, and may provide clinically useful data.