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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. Titles, abstracts and full text articles were reviewed for the use of PROMs and a list of the 100 most cited articles using PROMs was obtained and stratified by year of publication. RESULTS: A total of 1,996 articles were screened. Seventy-seven out of the 100 articles identified included one PROM, and the average number of instruments was 1.5 ± 1.1. The most widely used PROMs were the National Eye Institute Visual Function Questionnaire (33%), the Ocular Surface Disease Index (14%) and the Medical Outcomes Study Short Form (13%). A simulation analysis suggested that the distribution of PROM use in ophthalmology study did not significantly differ from a power law distribution. Twenty-two percent and fifteen percent of articles did not reference and did not specify the PROM used, respectively. This rate decreased in the more recently published articles (p = 0.041). CONCLUSIONS: Our data suggest that the heterogeneity of PROMs applied in ophthalmology studies is low. The selection of PROMs for clinical studies should be done carefully, depending on the research goal.
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Oftalmología , Medición de Resultados Informados por el Paciente , Humanos , Oftalmología/estadística & datos numéricos , Investigación Biomédica , Encuestas y CuestionariosRESUMEN
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. These therapies slow down, but do not stop or reverse, the progression of GA; they may also increase the risk of developing the neovascular ('wet') type of AMD. In light of these developments, this study aims to quantify the acceptability of these new intravitreal injection treatments to patients with GA in the UK and explore factors that may influence the acceptability of these treatments. METHODS AND ANALYSIS: In this cross-sectional, non-interventional study, the primary objective is to determine the proportion of patients with GA that find regular intravitreal therapy acceptable for slowing the progression of GA. We will use a validated acceptability questionnaire in order to quantify the acceptability of new treatments among patients with GA. The correlation between acceptability and functional and structural biomarkers of GA will be established. We will also explore demographic, general health and ocular factors that may influence acceptability. 180 individuals with a diagnosis of GA will be recruited from 7 to 8 participating National Health Service trusts across the UK. Multiple regression analysis will be conducted to determine the simultaneous effects of multiple factors on patient acceptability. ETHICS AND DISSEMINATION: The study received ethical approval from the Health Research Authority on 14 March 2023 (IRAS Project ID: 324854). Findings will be disseminated through peer-reviewed publications and conference presentations to the medical retina community, as well as through dialogue with patients and macular disease charities.
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Atrofia Geográfica , Degeneración Macular , Degeneración Macular Húmeda , Humanos , Atrofia Geográfica/tratamiento farmacológico , Estudios Transversales , Inactivadores del Complemento/uso terapéutico , Medicina Estatal , Degeneración Macular/tratamiento farmacológico , Reino Unido , Inyecciones Intravítreas , Inhibidores de la Angiogénesis/uso terapéutico , Degeneración Macular Húmeda/tratamiento farmacológicoRESUMEN
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 performance was compared to previously published 99% normative limits for normally sighted individuals. RESULTS: Thirty-four participants (56%; 95% confidence interval [CI] 43%-68%) exceeded normative limits for visual search, while eight (13%; 95% CI 65%-24%) exceeded normative limits for face discrimination. Search duration was significantly longer for people with severe DME than those with mild and moderate DME (p = 0.01). Face discrimination performance was not significantly associated with DME severity. VF-7 scores were statistically similar across DME severity groups. Median time to complete all elements (eligibility screening, both tablet-based tasks and the VF-7) was 22 (quartiles 19, 25) min. Further, 98% and 87% of participants, respectively, reported the search task and face discrimination task to be enjoyable, while 25% and 97%, respectively, reported finding the two tasks to be difficult. CONCLUSIONS: Portable tablet-based tests are quick, acceptable to patients and feasible to be performed in a clinic waiting area with minimal supervision. They have the potential to be piloted in patients' homes for self-monitoring.
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Diabetes Mellitus , Retinopatía Diabética , Edema Macular , Humanos , Edema Macular/complicaciones , Estudios de Factibilidad , Agudeza Visual , Pruebas de VisiónRESUMEN
OBJECTIVE: Geographic Atrophy (GA) is the advanced form of the non-neovascular ('dry') type of age-related macular degeneration (AMD) and responsible for one-quarter of legal blindness in the UK. New therapies delivered by intravitreal injection are in late-stage development, and two such therapies (pegcetacoplan (Syfovre) and avacincaptad pegol (Izervay)) have now been approved for clinical use by the US Food and Drug Administration. These therapies slow down, but do not stop or reverse, progression of GA and they may also increase the risk of developing the neovascular ('wet') type of AMD. Within a larger study exploring the acceptability of these new treatments to people living with GA, we developed a forced-choice exercise to evaluate how participants weigh up benefits and drawbacks of different treatment regimens. This research note reports quantitative and qualitative findings from this exercise. RESULTS: Twenty-eight participants took part in this exercise. The exercise demonstrated that participants were generally, although not unanimously, in favour of less frequent treatment for GA that was slightly less efficacious in terms of preserving visual function but presented a lower risk of developing wet AMD. Even among a small sample, the exercise demonstrated the highly personal and idiosyncratic decision-making processes influencing participants' choices of preferred hypothetical GA treatment.
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Atrofia Geográfica , Degeneración Macular , Humanos , Atrofia Geográfica/tratamiento farmacológico , Degeneración Macular/tratamiento farmacológicoRESUMEN
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. Repeat measures were assessed by Bland-Altman analysis, intra-class correlation coefficients (ICCs) and variability ratios. Secondary analysis assessed the area under the receiver operating characteristic curves (AUC) to determine the ability to distinguish people as having no AMD, early AMD, or iAMD. Results: Data were available for 128, 131, and 103 iAMD participants for the mesopic and scotopic S-MAIA and AdaptDx, respectively. MMAT and SMAT demonstrate similar test-retest variability in iAMD (95% confidence interval [CI] ICC of 0.79-0.89 and 0.78-0.89, respectively). ICCs were worse in RIT (95% CI ICC = 0.55-0.77). All tests had equivalent AUCs (approximately 70%) distinguishing between subjects with iAMD and controls, whereas early AMD was indistinguishable from iAMD on all measures (AUC = <55%). A learning effect was not seen in these assessments under the operating procedures used. Conclusions: MMAT, SMAT, and RIT have adequate test-retest variability and are all moderately good at separating people with iAMD from controls. Translational Relevance: Expected levels of test-retest variability and discriminatory power of the AdaptDx and MAIA devices in a clinical study setting must be considered when designing future trials for people with AMD.
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Degeneración Macular , Pruebas del Campo Visual , Humanos , Adaptación a la Oscuridad , Estudios TransversalesRESUMEN
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. Participants responded to a structured questionnaire, as well as open-ended questions in a semi-structured interview. The Theoretical Framework of Acceptability (TFA) informed framework analysis of the qualitative data. RESULTS: Twenty participants (67%) were female, and median (interquartile range (IQR)) age was 83 (78, 87) years. 37% of participants had foveal centre-involving GA, and better eye median (IQR) logMAR visual acuity was 0.30 (0.17, 0.58). Data suggested that 18 participants (60% (95% CI: 41-79%)) would accept the treatment, despite awareness of potential drawbacks. Eight participants (27% (95% CI: 10-43%) were ambivalent or undecided about treatment, and four (13%) (95% CI: 0-26%) would be unlikely to accept treatment. Reducing the frequency of injections from monthly to every other month increased the proportion of participants who considered the treatments acceptable. Conversely, factors limiting acceptability clustered around: the limited magnitude of treatment efficacy; concerns about side effects or the increased risk of neovascular AMD; and the logistical burden of regular clinic visits for intravitreal injections. Misunderstandings of potential benefits indicate the need for appropriately-designed patient education tools to support decision-making. CONCLUSIONS: Our study suggests a majority of participants would be positive about intravitreal treatment for GA, in spite of potential burdens.
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Atrofia Geográfica , Degeneración Macular Húmeda , Humanos , Femenino , Masculino , Atrofia Geográfica/tratamiento farmacológico , Inhibidores de la Angiogénesis/uso terapéutico , Factor A de Crecimiento Endotelial Vascular/uso terapéutico , Agudeza Visual , Degeneración Macular Húmeda/tratamiento farmacológico , Degeneración Macular Húmeda/complicaciones , Inyecciones IntravítreasRESUMEN
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. These can slow down, but do not stop or reverse, GA progression. The acceptability of these emerging therapies to people with GA is currently unknown. The present case study explores the perspectives of a person living with GA who took part in the terminated Phase 3 clinical trial of Lampalizumab, a candidate intravitreal treatment for GA. We explored this patient's perspective on the retrospective acceptability of regular Lampalizumab injections, and the prospective acceptability of future intravitreal therapies for GA. Patients and Methods: A 78-year-old woman living in the UK was recruited as part of a mixed-methods pilot study and interviewed by telephone, regarding: her experience of the Lampalizumab trial injections; and her thoughts regarding emerging intravitreal therapies for GA. The Framework Method was used for initial inductive analysis of the interview transcript. Subsequently, deductive analysis was undertaken, informed by the Theoretical Framework of Acceptability (TFA). Results: For this participant, intravitreal injections in the Lampalizumab trial were acceptable, although streamlining processes within the clinic would have improved the patient experience. Regarding prospective acceptability of new intravitreal therapies, the participant considered a delay in progression of GA a valuable goal. Potential discomfort, anxiety and inconvenience associated with regular intravitreal injections would be acceptable in the context of preserving her vision for as long as possible. Conclusion: Analysis of one participant's experience demonstrates the value of exploring GA patients' unique views on the acceptability of new intravitreal treatments. Larger prospective studies will provide more insight that help to optimise treatment design and delivery, thereby maximising likelihood of adherence and persistence when these therapies eventually arrive in clinic.
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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. METHODS AND ANALYSIS: Readability measures determine the level of education a person is expected to have attained to be able to read a passage of text; this was calculated using the Flesch-Kincaid Grade Level, FORCAST and Gunning-Fog tests within readability calculations software package Oleander Readability Studio 2012.1. Forty PROMs, previously validated for use in at least one of age-related macular degeneration, glaucoma and/or diabetic retinopathy, were identified for inclusion via a systematic literature search. The American Medical Association (AMA) and National Institutes of Health (NIH) recommend patient materials should not exceed a sixth-grade reading level. Number of PROMs exceeding this level was calculated. RESULTS: Median (IQR) readability scores were 7.9 (5.4-10.5), 9.9 (8.9-10.7) and 8.4 (6.9-11.1) for Flesch-Kincaid Grade Level, FORCAST and Gunning-Fog test, respectively. Depending on metric used, this meant 61% (95% CI 45% to 76%), 100% (95% CI 91% to 100%) and 80% (95% CI 65% to 91%) exceeded the recommended threshold. CONCLUSION: Most PROMs commonly used in ophthalmology require a higher reading level than that recommended by the AMA and NIH and likely contain questions that are too difficult for many patients to read. Greater care is needed in designing PROMs appropriate for the literacy level of a population.
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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.
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Glaucoma , Pruebas del Campo Visual , Adulto , Anciano , Femenino , Glaucoma/diagnóstico , Humanos , Presión Intraocular , Proyectos Piloto , Investigación Cualitativa , Trastornos de la Visión/diagnóstico , Campos VisualesRESUMEN
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. While intravitreal injections have become an established treatment modality for neovascular (wet) AMD, it is unknown whether patients with (more gradually progressing) GA would accept regular injections that slow down, but do not stop or reverse, vision loss. Therefore, this mixed-methods pilot study will aim to explore whether regular intravitreal injections will be acceptable as treatment for patients with GA, and the factors that may affect treatment acceptability. METHODS AND ANALYSIS: A mixed-methods survey has been designed in collaboration with a GA patient advisory group. The survey comprises of structured questionnaires, semi-structured interview questions regarding patients' perceptions of intravitreal injections and the burden of treatment, and a task eliciting preferences between different potential treatments. Due to COVID-19 restrictions, this study will be conducted remotely by telephone. Thirty individuals will be recruited from NHS Medical Retina clinics at Central Middlesex Hospital, London. Half of the participants will be naïve to intravitreal injections, while half will have previous experience of intravitreal injections for neovascular (wet) AMD. Qualitative data analysis will be conducted using the Framework Method of analysis to identify key themes from participants' accounts. ETHICS AND DISSEMINATION: The study received Health Research Authority approval on 23 March 2021 (IRAS Project ID: 287824). Findings will be disseminated through peer-reviewed publications and conference presentations to the medical retina community, as well as through dialogue with patients and macular disease charities.
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Atrofia Geográfica , Telemedicina , Degeneración Macular Húmeda , Inhibidores de la Angiogénesis/uso terapéutico , Atrofia Geográfica/tratamiento farmacológico , Humanos , Inyecciones Intravítreas , Londres , Proyectos Piloto , Degeneración Macular Húmeda/tratamiento farmacológicoRESUMEN
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. Details of eligible studies including study design, characteristics of study population and outcomes were recorded. All included studies underwent quality appraisal using approved critical appraisal tools. This systematic review follows PRISMA guidelines (PROSPERO registration number: CRD42019129486). RESULTS: Forty-eight studies were eligible for inclusion, reporting a variety of instruments and protocols to assess different DA parameters. Twenty of these studies used the AdaptDx (MacuLogix, Hummelstown, PA, USA) instrument and assessed rod-intercept time (RIT). Most of these reported that RIT was delayed in people with AMD and this delay worsened with AMD severity. Four studies, involving 533 participants, reported estimates of diagnostic performance of AdaptDx to separate people with AMD from visually healthy controls. DA has been compared to other measures of visual function, patient-reported outcome measures (PROMs) and structural measures. Ten studies specifically considered evidence that the presence of certain structural abnormalities was associated with impaired DA in AMD. CONCLUSIONS: This systematic review indicates overwhelming evidence of reasonable quality for an association between impaired DA and AMD. Data on the repeatability and reproducibility of DA measurement are sparse. There is evidence that structural abnormalities such as reticular drusen are associated with prolongation of DA time. Fewer studies have explored an association between DA and other measures of visual function or PROMs. We found no studies that had compared DA with performance-based measures.
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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. In a visual search task, participants had to locate an image of a single real-world object within an array of 49 distractor images. Next, in a series of simulated dynamic driving scenes, participants were asked to identify one or two approaching real-world road signs and then select these road signs from four options. Outcome measures were median response times and total correct responses. RESULTS: Forty-nine participants had no macular disease (n = 11), early/intermediate age-related macular degeneration (n = 16) or geographic atrophy (n = 22). Groups were age-similar with median (interquartile range) logMAR visual acuity of 0.00 (-0.08,0.12), 0.13 (-0.08,0.70) and 0.32 (0.12,0.70) respectively. Median (interquartile range) visual search response times were 1.9 (1.0,2.4), 1.8 (1.1,3.7) and 2.4 (1.2,6.0) seconds respectively. Median (interquartile range) road sign response times (single road signs) were 1.2 (0.4,1.7), 1.5 (0.9,2.8) and 1.8 (1.0,5.5) seconds respectively. Median (interquartile range) road sign response times (double road signs) were 1.7 (0.7,2.4), 2.3 (1.2,3.1) and 2.5 (1.7,6) seconds respectively. Participants with geographic atrophy recorded slower response times in all tasks and over 50% performed outside the normative limit for task performance. There were no significant differences between groups in total correct responses across all tasks. CONCLUSIONS: In a novel computer-based assessment, people with increasing severity of age-related macular degeneration take longer to perform visual search of everyday objects and take longer to identify road signs than those with no age-related macular degeneration. These novel assessments could be useful as patient-relevant, secondary outcomes for clinical trials.
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Degeneración Macular/fisiopatología , Pruebas de Visión/métodos , Agudeza Visual/fisiología , Anciano , Computadores , Femenino , Atrofia Geográfica/diagnóstico , Atrofia Geográfica/fisiopatología , Humanos , Procesamiento de Imagen Asistido por Computador/métodos , Degeneración Macular/diagnóstico , Masculino , Persona de Mediana Edad , Tiempo de Reacción , Visión Ocular/fisiologíaRESUMEN
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. Transcripts were analysed using thematic analysis. SETTING: Hospital eye service in the UK. PARTICIPANTS: Twelve participants with a diagnosis of glaucoma with worse eye visual acuity <3/60± end-stage visual field loss. All participants had experience of undergoing surgery on their better-seeing (ie, 'only') eye. RESULTS: Data were coded into three key themes relating to (1) emotional impact of surgery, (2) burden of visual loss and (3) coping with surgery. Patients reported depressive symptoms at all stages of their surgical journey; concern about poor visual outcomes was a common feature. Only eye surgery imposes an emotional burden due to the uncertainty regarding individuals' ability to continue daily activities and maintaining social roles. Burden extended to the inconvenience of frequent hospital visits and difficulties with follow-up care. Participants' ability to cope effectively with surgery appeared to be linked to extent of support from healthcare professionals. Key areas in developing trust and support were an open and transparent dialogue between surgeons and patients, continuity of care, patient inclusion in decision-making, and observable empathy. CONCLUSIONS: The findings indicate a need for an enhanced model of care in only eye surgery to better target patient preferences and allay concerns inherent with these procedures.
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Procedimientos Quirúrgicos Oftalmológicos , Adaptación Psicológica , Femenino , Humanos , Masculino , Evaluación del Resultado de la Atención al Paciente , Investigación Cualitativa , Visión OcularRESUMEN
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. Pressure traces were generated, which aligned with each movie time point. Group averages based on AMD severity were generated. Bootstrapped confidence intervals (CIs) for responses by group were generated around traces. Traces were examined to discover events causing the greatest differences between groups. RESULTS: Participants had early/no AMD (n=8), intermediate AMD (n=7) or geographic atrophy (n=15 (GA)). Median (IQR) logMAR visual acuity was 0.04 (-0.04, 0.18), 0.26 (0.10, 0.40) and 0.32 (0.20, 0.56), respectively. Participants with intermediate AMD or GA recorded greater pressure than those with early and no AMD (Kruskal-Wallis, p=0.04). Four events involving navigating stairs and three under low luminance elicited greatest differences between groups (p<0.001). CONCLUSION: People with intermediate AMD or GA likely experience higher levels of concern associated with mobility. The test highlights areas of specific concern. Results should be useful in patient management and educating the public about the everyday effects of AMD.
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Trastornos de Ansiedad/diagnóstico , Trastornos del Conocimiento/diagnóstico , Evaluación de la Discapacidad , Atrofia Geográfica/diagnóstico , Limitación de la Movilidad , Anciano , Anciano de 80 o más Años , Trastornos de Ansiedad/fisiopatología , Trastornos del Conocimiento/fisiopatología , Diagnóstico por Computador , Femenino , Atrofia Geográfica/fisiopatología , Humanos , Masculino , Desempeño Psicomotor , Autoimagen , Agudeza Visual/fisiología , Pruebas del Campo VisualRESUMEN
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. Overarching themes were pre-defined, whilst subthemes were derived from the data. RESULTS: Twenty-seven participants (81% female), with early (n = 3), intermediate (n = 16) and advanced dry AMD (GA; n = 8) were interviewed. Median (interquartile range) age (years), logMAR binocular visual acuity and Pelli-Robson contrast sensitivity were 76 (71, 80), 0.2 (0.18, 0.40) and 1.65 (1.35, 1.93), respectively. Overarching themes (and subthemes) were: diagnosis (relationship with healthcare professional, psychological impact of diagnosis, and knowledge of AMD, both pre- and post-diagnosis), impact of visual loss (functional and psychological) and coping strategies (help from others and personal strategies). Many participants reported feelings of distress at the time of diagnosis and, particularly noteworthy, several reported a constant fear of their condition worsening. CONCLUSIONS: Dry AMD, for which there is currently no treatment, can have a significant impact on individuals, even in its early stages, before significant functional vision loss is manifest, as well as in its intermediate and advanced stages. Results from this study offer important insight into the experience of living with dry AMD not previously explored. Moreover, the results have the potential to serve as an educational resource for eyecare professionals.
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Atrofia Geográfica , Degeneración Macular , Sensibilidad de Contraste , Femenino , Humanos , Masculino , Trastornos de la Visión , Agudeza VisualRESUMEN
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. Data were extracted from eligible studies regarding study design, participant characteristics, outcomes, and results. Quality of included studies was critically appraised. Of 8437 studies, 56 eligible studies were included. Studies investigated the effects of lighting on the following domains among people with POAG: QoL (18/56), psychophysical measures (16/56), functional vision (10/56), activities of daily living (10/56), and qualitative findings (2/56). POAG negatively affects low-luminance contrast sensitivity, glare symptoms, and dark adaptation time and extent. In vision-related QoL questionnaires, people with POAG report problems with lighting, glare, and dark adaptation more frequently than any other domain. These problems worsen with progressing visual field loss. Early-stage POAG patients experience significantly more difficulties in low-luminance or changing lighting conditions than age-matched controls (AMCs), challenging perceptions of early-stage POAG as asymptomatic. However, performance-based studies seldom show significant differences between POAG participants and AMCs on tasks simulating daily activities under non-optimal lighting conditions. Further research with larger samples is required to optimise ambient and task-oriented lighting that can support patients' adaptation to POAG.
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Glaucoma de Ángulo Abierto , Glaucoma , Actividades Cotidianas , Humanos , Iluminación , Calidad de Vida , Agudeza VisualRESUMEN
An amendment to this paper has been published and can be accessed via a link at the top of the paper.
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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. Post-hoc analyses were performed to determine the number of trials required to obtain stable estimates of performance. Distributions were fitted to the normative data to determine the 99% population-boundary for normally sighted observers. Participants were also asked to rate their comprehension of each test. RESULTS: Both tests provided stable estimates in around 20 trials (~1-4 min), with only a further reduction of 14%-17% in the 95% Coefficient of Repeatability (CoR95 ) when an additional 40 trials were included. When using only ~20 trials: median durations for the first run of each test were 191 s (Faces) and 51 s (Search); test-retest CoR95 were 0.27 d (Faces) and 0.84 s (Search); and normative 99% population-limits were 3.50 d (Faces) and 3.1 s (Search). No participants exhibited any difficulties completing either test (100% completion rate), and ratings of task-understanding were high (Faces: 9.6 out of 10; Search: 9.7 out of 10). CONCLUSIONS: This preliminary assessment indicated that both tablet-based tests are able to provide simple, quick, and easy-to-administer measures of real-world visual function in normally-sighted young adults. Further work is required to assess their accuracy and utility in older people and individuals with visual impairment. Potential applications are discussed, including their use in clinic waiting rooms, and as an objective complement to Patient Reported Outcome Measures (PROMs).