Perception of patients with retinal pathology on aspects of visual function and their management.

BACKGROUND AND OBJECTIVE: Age-related macular degeneration (AMD) and diabetic retinopathy (DR) are highly prevalent. OBJECTIVE: To explore perceptions of patients with AMD or DR about the impact of the disease and treatment on their daily living activities. MATERIALS AND METHODS: Semi-structured interviews with a questionnaire developed from validated patient reported outcomes questionnaires. The questionnaire consisted of 19 questions about the disease and 9 about the treatment. The questions (items) were answered on a scale from 1 to 9. In addition, the patient interviewed was invited to make free comments on each question. Nine patients with AMD and 9 with DR were interviewed by videoconference or telephone call. A quantitative analysis of the responses and a qualitative analysis of the comments were carried out. RESULTS: The most relevant item for patients with AMD or DR is "Recognize people when they are nearby", and "Read text in normal size font in a newspaper or book", followed, in patients with AMD, by "Do things what you would like" and, in patients with DR, "Feeling frustrated by the vision problems." Regarding the treatment, the most relevant aspects for both groups is that the treatment works and receiving appropriate information before and after the treatment. The qualitative comments were focused to the disease, the treatment, and to the role of doctors and the health system. CONCLUSION: Quantitative responses and free comments can be useful to improve the care of patients with AMD or DR by physicians and the health system.

Exploring the factors influencing nutritional literacy based on the socioecological model among patients with age-related macular degeneration: a qualitative study from China.

OBJECTIVES: Although nutritional support is beneficial to the visual rehabilitation of patients with age-related macular degeneration (AMD), a large gap continues to exist between the relevant guidelines and the actual practices of AMD patients; this gap can be attributed to a lack of nutritional literacy. Therefore, this study explored the factors affecting nutritional literacy among AMD patients. DESIGN: A qualitative study was carried out based on individual in-person interviews with 15 AMD patients; a semistructured interview guide was used for data collection. The socioecological model (SEM) was employed for data analysis. SETTING: The Southwest Hospital in Chongqing Province, China. PARTICIPANTS: A purposive sample of 15 AMD patients was recruited between May and June 2023. RESULTS: The social ecosystem of patients with AMD has not been positive. At the intrapersonal level, the factors affecting the nutritional literacy of such patients are lack of knowledge, nutrition self-efficacy, economic burdens, dietary preferences and health status. At the interpersonal level, the factors that can influence patients' nutritional literacy are social support and social roles. At the institutional level, the relevant factors are doctor-patient trust and interdisciplinary-team consistency. Finally, at the policy level, a powerful factor is the large gap between policy and implementation. DISCUSSION: Nutritional literacy focuses on the changes in an individual's knowledge and behaviour concerning nutrition. To inform the development of nutritional-literacy interventions for people with AMD, medical staff should consider multiple perspectives that can remove the barriers to the SEM at all levels.

Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients' perspectives.

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

Development and Valuation of a Preference-Weighted Measure in Age-Related Macular Degeneration From the Vision Impairment in Low Luminance Questionnaire: A MACUSTAR Report.

OBJECTIVES: This study generates VILL-UI (Vision Impairment in Low Luminance - Utility Index), a preference-weighted measure (PWM) derived from the VILL-33 measure for use in patients with age-related macular degeneration (AMD) and valued to generate United Kingdom and German preference weights. METHODS: A PWM consists of a classification system to describe health and utility values for every state described by the classification. The classification was derived using existing data collected as part of the MACUSTAR study, a low-interventional study on AMD, conducted at 20 clinical sites across Europe. Items were selected using psychometric and Rasch analyses, published criteria around PWM suitability, alongside instrument developer views and concept elicitation work that informed VILL-33 development. An online discrete choice experiment (DCE) with duration of the health state was conducted with the United Kingdom and German public. Responses were modeled to generate utility values for all possible health states. RESULTS: The classification system has 5 items across the 3 domains of VILL-33: reading and accessing information, mobility and safety, and emotional well-being. The DCE samples (United Kingdom: n = 1004, Germany: n = 1008) are broadly representative and demonstrate good understanding of the tasks. The final DCE analyses produce logically consistent and significant coefficients. CONCLUSIONS: This study enables responses to VILL-33 to be directly used to inform economic evaluation in AMD. The elicitation of preferences from both United Kingdom and Germany enables greater application of VILL-UI for economic evaluation throughout Europe. VILL-UI fills a gap in AMD in which generic preference-weighted measures typically lack sensitivity.

Comparative analysis of the quality of life among different retinal diseases.

PURPOSE: To assess the impact on the quality of life (QoL) among different retinal diseases such as diabetic macular edema (DME), retinal vein occlusion (RVO), pathologic myopia (PM), neovascular age-related macular degeneration (nAMD) and central serous chorioretinopathy (CSC). METHODS: A cross-sectional study was carried out in 241 patients, affected by DME (n=44), RVO (n=41), PM (n=34) and nAMD (n=85) receiving intravitreal injections due to the presence of macular edema or choroidal neovascularization. The CSC patients included (n=37) were candidates for laser treatment. The patients included completed the National Eye Visual Functioning Questioning-25 (NEI VFQ-25). Best eye visual acuity (BEVA) was recorded using the Early Treatment Diabetic Retinopathy Study (ETDRS) scale. RESULTS: There were significant differences between subgroups for all the domains, except for the general vision in which all scores among diseases ranged from 40.7 to 45.2 out of 100 (P=.436), despite the difference in BEVA (CSC: 86.3±11.9; RVO: 78.5±15.5, DME: 73.3±15.2, nAMD: 72.9±12.6 and PM: 68.5±18.1 letters respectively; P<.001). The lowest VFQ-25 total score was observed in the PM patients (52.1±20.9), followed by nAMD (55.3±20.8), RVO (65.0±22.3), DME (68.6±21.0) and CSC (70.9±16.2). The DME group reported the worst score for general health (38.9±21.4). Mental health and role difficulties were lowest for PM (48.2±28.8 and 48.2±31.9, P<.007). CONCLUSIONS: This study reveals the differences in the QoL among DME, RVO, nAMD, PM and CSC, describing the different repercussions that they can suffer, observing a higher impact in PM and nAMD.

Mental health and visual acuity in patients with age-related macular degeneration.

BACKGROUND: Visual acuity (VA) loss has been associated with depression in patients with age-related macular degeneration (AMD). However, previous studies did not incorporate subgroups of AMD when correlating VA and mental health. The goal of this study was to describe the relationship between VA and mental health questions in patients with different classifications of AMD, and to identify associations of mental health subscale scores. METHODS: AMD patients classified by multi-modal imaging were recruited into an AMD registry. Habitual VA was obtained by ophthalmic technicians using the Snellen VA at distance. At enrollment, patients completed the NEI-VFQ-25, which includes 25 questions regarding the patient's visual functionality. Median with interquartile-range (IQR) scores on the mental health subscale of the VFQ were calculated by AMD classification and VA groups. Univariate and multivariable general linear models were used to estimate associations between mental health scores and variables of interest. RESULTS: Eight hundred seventy-five patients were included in the study. Patients with bilateral geographic atrophy (GA) or bilateral GA and neovascular (NV) AMD scored lowest on the mental health subscales with a median (IQR) of 58.2 (38-88) and 59.3 (38-88). When stratified by VA, patients with a habitual VA of 20/200 or worse scored the lowest on mental health subscales scores: median of 43.8 (IQR: 31-62). Patients with a VA of 20/20 scored the highest: 87.5 (IQR: 81-94). Habitual VA of the better- and worse-seeing eye and AMD classification were significantly associated with mental health subscale scores (all p < 0.0001 in both the univariate and multivariable analysis, except the VA of the worse-seeing eye in multivariable model p = 0.027). Patients enrolled during the COVID pandemic had mental health scores that were 2.7 points lower than prior to the pandemic, but this difference was not significant in univariate (p = 0.300) or multivariable analysis (p = 0.202). CONCLUSION: There is a significant association between mental health questionnaire scores and AMD classification, as well as VA in both the better and worse-seeing eyes in patients with AMD. It is important for clinicians to recognize feelings of worry/ frustration in these patients, so they can be appropriately referred, screened, and treated for mental health problems.

Emotional and physical experiences of people with neovascular age-related macular degeneration during the injection process in Germany: a qualitative study.

OBJECTIVES: In order to better understand the continued barriers to the provision of vascular endothelial inhibitor therapy, this study aims to investigate patients' experiences with neovascular age-related macular degeneration (nvAMD) in Germany during the injection process and how they deal with it. DESIGN AND PARTICIPANTS: This analysis is part of the qualitative arm of a wider mixed-methods study. We recruited participants all over Germany via ophthalmologists, eye clinics, general practitioners, care bases and support groups between June 2018 and December 2020 and selected a subsample of study participants with nvAMD who were either undergoing or had previously undergone vascular endothelial growth factor inhibitor therapy. We conducted narrative, semistructured, face-to-face interviews at the participants' homes, which were audio-recorded. The interviews were thematically analysed. RESULTS: Twenty-two participants were included in this analysis. Experiencing neovascular macular degeneration was dominated by the injection experience. Study participants perceived the treatment with vascular endothelial inhibitor injections as uncomfortable, and they described undergoing varying levels of anxiety during the whole injection process. After some years of receiving multiple injections, the pain and not experiencing any positive effects made participants with significant vision loss want to discontinue therapy. Furthermore, they narrated negative injection experiences in association with their interactions with medical staff and doctors. CONCLUSION: Although time in the medical setting is limited, efficient and good doctor-patient relationships seem crucial for satisfying care experiences. A respectful and humane relationship may be one key to achieving treatment adherence.

Quality of life among patients from urban and rural areas with advanced age-related macular degeneration assessed using the NEI-VFQ-25.

OBJECTIVE: The aim of the study was to explore the influence of exudative age-related macular degeneration on the quality of life of patients from urban and rural areas. MATERIAL AND METHODS: The retrospective study included 144 Polish Caucasians with exudative age-related macular degeneration, treated with anti-VEGF, recruited from Department of Medical Retina in Lublinbetween March and June 2017. Clinical assessment included age, gender, visual acuity, complete ophthalmic examination, fundus fluorescein angiography and optical coherence tomography, medical history and the NEI VFQ-25 questionnaire. RESULTS: The mean age of the study group was 76.73±12.3 years, average time of AMD was 4.24±4.1 years. 21.5% of patients reported comorbidities such as hypertension, cardiovascular disease, diabetes mellitus. 99 (68.75%) lived in a city, while 45(31.25%) in a village. There was a tendency of females to complain more than males about moderate and severe discomfort and pain (p = 0.09). Most of the patients did not drive a car before the onset of the disease (female vs.male: 81% vs 62.9%; p = 0.01). 62.8% males and 25.8% females gave up driving (p = 0.003), whereas significantly more males gave up driving' and 25% of villagers gave up driving (p = 0.07). The parameter because of the eyesight - female vs. male: 50% vs. 20.8%; p = 0.03. There was a tendency of village respondents to complain more often about extreme difficulty in reading newspapers, street signs or the names of stores than (p = 0.08). 44.2% city residents. Rural patients felt to achieve much less because of their eyesight, which was not observed in patients from the city (p = 0.06). CONCLUSIONS: The place of residence and gender influenced perception of the disease in exudative form of age-related macular degeneration.

Prevention of depression in adults with long-term physical conditions.

BACKGROUND: Major depression is one of the world's leading causes of disability in adults with long-term physical conditions compared to those without physical illness. This co-morbidity is associated with a negative prognosis in terms of increased morbidity and mortality rates, increased healthcare costs, decreased adherence to treatment regimens, and a substantial decline in quality of life. Therefore, preventing the onset of depressive episodes in adults with long-term physical conditions should be a global healthcare aim. In this review, primary or tertiary (in cases of preventing recurrences in those with a history of depression) prevention are the focus. While primary prevention aims at preventing the onset of depression, tertiary prevention comprises both preventing recurrences and prohibiting relapses. Tertiary prevention aims to address a depressive episode that might still be present, is about to subside, or has recently resolved. We included tertiary prevention in the case where the focus was preventing the onset of depression in those with a history of depression (preventing recurrences) but excluded it if it specifically focused on maintaining an condition or implementing rehabilitation services (relapse prevention). Secondary prevention of depression seeks to prevent the progression of depressive symptoms by early detection and treatment and may therefore be considered a 'treatment,' rather than prevention. We therefore exclude the whole spectrum of secondary prevention. OBJECTIVES: To assess the effectiveness, acceptability and tolerability of psychological or pharmacological interventions, in comparison to control conditions, in preventing depression in adults with long-term physical conditions; either before first ever onset of depressive symptoms (i.e. primary prevention) or before first onset of depressive symptoms in patients with a history of depression (i.e. tertiary prevention). SEARCH METHODS: We searched the Cochrane Common Mental Disorders Controlled Trials Register, CENTRAL, MEDLINE, Embase, PsycINFO and two trials registries, up to 6 February 2020. SELECTION CRITERIA: We included randomised controlled trials (RCTs) of preventive psychological or pharmacological interventions, specifically targeting incidence of depression in comparison to treatment as usual (TAU), waiting list, attention/psychological placebo, or placebo. Participants had to be age 18 years or older, with at least one long-term physical condition, and no diagnosis of major depression at baseline (primary prevention). In addition, we included studies comprising mixed samples of patients with and without a history of depression, which explored tertiary prevention of recurrent depression. We excluded other tertiary prevention studies. We also excluded secondary preventive interventions. Primary outcomes included incidence of depression, tolerability, and acceptability. Secondary outcomes included severity of depression, cost-effectiveness and cost-utility. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. MAIN RESULTS: We included 11 RCTs, with one trial on psychological interventions, and 10 trials on pharmacological interventions. Data analyses on the psychological intervention (problem-solving therapy compared to TAU) included 194 participants with age-related macular degeneration. Data analyses on pharmacological interventions included 837 participants comparing citalopram (one trial), escitalopram (three trials), a mixed sample of fluoxetine/nortriptyline (one trial), melatonin (one trial), milnacipran (one trial), and sertraline (three trials), each to placebo. Included types of long-term physical conditions were acute coronary syndrome (one trial), breast cancer (one trial), head and neck cancer (two trials), stroke (five trials), and traumatic brain injury (one trial). Psychological interventions Very low-certainty evidence of one study suggests that problem solving therapy may be slightly more effective than TAU in preventing the incidence of depression, immediately post-intervention (odds ratio (OR) 0.43, 95% confidence interval (CI) 0.20 to 0.95; 194 participants). However, there may be little to no difference between groups at six months follow-up (OR 0.71, 95% CI 0.36 to 1.38; 190 participants; one study; very low-certainty evidence). No data were available regarding incidence of depression after six months. Regarding acceptability (drop-outs due to any cause), slightly fewer drop-outs occurred in the TAU group immediately post-intervention (OR 5.21, 95% CI 1.11 to 24.40; 206 participants; low-certainty evidence). After six months, however, the groups did not differ (OR 1.67, 95% CI 0.58 to 4.77; 206 participants; low-certainty evidence). This study did not measure tolerability. Pharmacological interventions Post-intervention, compared to placebo, antidepressants may be beneficial in preventing depression in adults with different types of long-term physical conditions, but the evidence is very uncertain (OR 0.31, 95% CI 0.20 to 0.49; 814 participants; nine studies; I2 =0%; very low-certainty evidence). There may be little to no difference between groups both immediately and at six months follow-up (OR 0.44, 95% CI 0.08 to 2.46; 23 participants; one study; very low-certainty evidence) as well as at six to 12 months follow-up (OR 0.81, 95% CI 0.23 to 2.82; 233 participants; three studies; I2 = 49%; very low-certainty evidence). There was very low-certainty evidence from five studies regarding the tolerability of the pharmacological intervention. A total of 669 adverse events were observed in 316 participants from the pharmacological intervention group, and 610 adverse events from 311 participants in the placebo group. There was very low-certainty evidence that drop-outs due to adverse events may be less frequent in the placebo group (OR 2.05, 95% CI 1.07 to 3.89; 561 participants; five studies; I2 = 0%). There was also very low-certainty evidence that drop-outs due to any cause may not differ between groups either post-intervention (OR 1.13, 95% CI 0.73 to 1.73; 962 participants; nine studies; I2 = 28%), or at six to 12 months (OR 1.13, 95% CI 0.69 to 1.86; 327 participants; three studies; I2 = 0%). AUTHORS' CONCLUSIONS: Based on evidence of very low certainty, our results may indicate the benefit of pharmacological interventions, during or directly after preventive treatment. Few trials examined short-term outcomes up to six months, nor the follow-up effects at six to 12 months, with studies suffering from great numbers of drop-outs and inconclusive results. Generalisation of results is limited as study populations and treatment regimes were very heterogeneous. Based on the results of this review, we conclude that for adults with long-term physical conditions, there is only very uncertain evidence regarding the implementation of any primary preventive interventions (psychological/pharmacological) for depression.

Perspectives of people with late age-related macular degeneration on mental health and mental wellbeing programmes: a qualitative study.

PURPOSE: People with age-related macular degeneration (AMD) experience high rates of depression, but rarely engage in or have access to tailored mental wellbeing programmes. This qualitative study investigated the perspectives of those primarily with late AMD on mental health and mental wellbeing programmes. METHODS: Twenty-eight people with late AMD in at least one eye, and one person with early AMD in both eyes, aged 56-87 years (mean age 78 years) attending a private eye clinic between December 2019 and January 2020 in Sydney, New South Wales, Australia, participated. Individual semi-structured interviews were conducted and analysed deductively using content analysis, following the individual level factors for health promotion interventions in the behaviour change wheel: Capability (Physical & Psychological), Opportunity (Physical & Social), and Motivation (Reflective & Automatic). RESULTS: Six major themes were identified: Capability: (1) Impact of vision loss on mobility and leisure pursuits; (2) Adjustment to living with vision loss; Opportunity: (3) Program considerations for those with AMD; (4) Stigma and self-perception of vision loss and mental health; Motivation: (5) Accumulation of vision-related issues as a barrier to participation; (6) Examples of others living with vision loss. General personal factors relevant to delivery of a programme in this age group were also identified: Comorbidities; Limitations using technology; Isolation; Financial concerns and Beliefs that undesired effects of aging are inevitable. CONCLUSIONS: Complex individual, environmental and social factors influence the perspectives of people with late AMD on mental health, and potential participation in mental wellbeing programmes. These factors should be considered when developing and implementing mental wellbeing programmes to improve the emotional and functional rehabilitation outcomes for people with AMD.

Randomized Controlled Trial of a Spectacle Lens for Macular Degeneration.

SIGNIFICANCE: E-Scoop, a spectacle lens, provides no clinically relevant improvements on quality of life, visual acuity, and contrast sensitivity for patients with AMD. Because patients' burden is high and therapeutic options are scarce, the incentive to develop effective vision rehabilitation interventions remains. PURPOSE: Patients with AMD experience low quality of life due to vision loss, despite angiogenesis inhibitor interventions that slow down progression for some patients. E-Scoop, which includes low-power prisms, 6% magnification, yellow tint, and antireflection coating, might aid in daily activities by improving distance viewing. Separately, these features have little proven effectiveness. E-Scoop has not been formally tested. This study aimed to determine the impact of E-Scoop on quality of life and the effect on visual acuity and contrast sensitivity. METHODS: In this randomized controlled, open-label trial, 190 of 226 eligible patients were included. The primary outcome was quality of life measured with the 25-item National Eye Institute Visual Function Questionnaire. Secondary outcomes were visual acuity and contrast sensitivity. The follow-up for quality of life was after 6 weeks for controls and after 3 weeks of use for E-Scoop wearers. The visual measures were repeated after 6 weeks, with optimal refractive correction, with and without E-Scoop. RESULTS: Randomization resulted in 99 E-Scoop and 86 control group patients for intention-to-treat analysis. No differential change was found between the E-Scoop and control groups on the 25-item National Eye Institute Visual Function Questionnaire using Rasch analysis (Cohen d = -0.07, P = .53). Statistically significant but small effects were found in favor of E-Scoop on binocular visual acuity (mean difference, 0.05 logMAR [2.5 letters, P < .001]) and contrast sensitivity (mean difference, 0.10 logCS [2 letters, P < .001]). CONCLUSIONS: No effect of E-Scoop on quality of life was found. E-Scoop showed effects that were statistically significant, although not clinically meaningful and within typical variability, on visual measures.

Telephone-Delivered Dietary Intervention in Patients with Age-Related Macular Degeneration: 3-Month Post-Intervention Findings of a Randomised Controlled Trial.

There is an evidence-practice gap between the dietary recommendations for age-related macular degeneration (AMD) presented in the literature and those practiced by patients. This study reports on the 3-month post-intervention results of a randomised controlled trial (RCT) evaluating telephone-delivered counselling to improve dietary behaviours among AMD patients. A total of 155 AMD patients (57% female, aged 78 ± 8 years; control: 78, intervention: 77), primarily residing in New South Wales, Australia, were recruited. Participants completed a baseline questionnaire and a short dietary questionnaire (SDQ-AMD). The intervention included an evidence-based nutrition resource and four monthly calls with a dietitian. Immediately post-intervention, intervention participants repeated the SDQ-AMD and completed a feedback form. At 3 months post-intervention, both study arms repeated the SDQ-AMD. Statistical analyses included t-tests and McNemar's test. Intervention participants reported satisfaction with the tailored phone calls, nutrition resource and nutrition education provided. At 3 months post-intervention, there was no statistically significant difference between study arms in the proportion of participants meeting the dietary goals nor in intake (mean servings ± SE) of total vegetables (primary outcome) and other key food groups; however, there was a significantly higher intake of nuts (secondary outcome) (3.96 ± 0.51 vs. 2.71 ± 0.32; p = 0.04) among participants in the intervention versus control group. Within the intervention arm, there were also significant improvements in intakes of the following secondary outcomes: dark green leafy vegetables (0.99 ± 0.17 vs. 1.71 ± 0.22; p = 0.003) and legumes (0.69 ± 0.10 vs. 1.12 ± 0.16; p = 0.02) and intake of sweets and processed/prepared foods (8.31 ± 0.76 vs. 6.54 ± 0.58, p = 0.01). In summary, although there were few dietary differences between study arms at 3 months post-intervention, the intervention involving four monthly calls was acceptable and helpful to the participants. This type of intervention therefore has the potential to provide people with AMD the needed support for improving their nutrition knowledge and dietary practices, especially if continued over a longer period.

Relationship between neural functional connectivity and memory performance in age-related macular degeneration.

Age-related macular degeneration (AMD) has been linked to memory deficits, with no established neural mechanisms. We collected resting-state brain functional magnetic resonance imaging and standardized verbal recall tests from 42 older adults with AMD and 41 age-matched controls. We used seed-based whole brain analysis to quantify the strength of functional connectivity between hubs of the default mode network and a network of medial temporal regions relevant for memory. Our results indicated neither memory performance nor network connectivity differed by AMD status. However, the AMD participants exhibited stronger relationships than the controls between memory performance and connectivity from the memory network hub (left parahippocampal) to 2 other regions: the left temporal pole and the right superior/middle frontal gyri. Also, the connectivity between the medial prefrontal cortex and posterior cingulate cortex of default mode network correlated more strongly with memory performance in AMD compared to control. We concluded that stronger brain-behavior correlation in AMD may suggest a role for region-specific connectivity in supporting memory in the context of AMD.

Levels of self-reported and objective physical activity in individuals with age-related macular degeneration.

BACKGROUND: Self-report in people with age-related macular degeneration (AMD) shows that they lead less active lifestyles. Physical activity is important as it has been shown to improve quality of life, reduce co-morbidity and also slow down the progression of AMD. Self-reported measures of physical activity are prone to subjective biases and therefore less accurate in quantifying physical activity. This study compared self-reported and objective (accelerometer-based) physical activity levels and patterns in older adults with AMD. METHODS: Data were collected in 11 AMD subjects with binocular vision loss (aged 76 ± 7 years), 10 AMD subjects with good binocular vision (aged 76 ± 7 years), and 11 controls (aged 70 ± 4 years). Binocular vision was established using visual acuity score. Contrast sensitivity and visual fields were also measured. Self-reported sedentary behaviour and moderate-to-vigorous physical activity (MVPA) was assessed using the Global Physical Activity Questionnaire. Objective measurements were obtained with an Actigraph GT3X accelerometer being worn for seven consecutive days on the hip. The objective physical activity measures were sedentary behaviour, light physical activity, MVPA, and step count. RESULTS: Objectively measured MVPA was 33-34% higher for controls compared to both AMD groups (p < 0.05). There were no group differences for any of the other objectively measured physical activity variables and self-reported physical activity variables were also not significantly different (all p > 0.05). Comparing the objective with the self-report physical activity measure showed that all groups under-reported their sedentary behaviour and MVPA, but controls under-reported their MVPA more than both AMD groups (p < 0.05). Weak to moderate correlations were observed between the severity of vision loss and objective physical activity measures (all - 0.413 ≥ r ≤ 0.443), while correlations for self-reported physical activity measures were less strong (all - 0.303 ≥ r ≤ 0.114). CONCLUSIONS: People with AMD, irrespective of whether they were vision impaired, were better able to estimate the time spent in MVPA compared to controls. However, objectively measured MVPA, was higher in controls than AMD subjects. Although clinicians may use self-report to monitor the compliance of AMD subjects with any prescribed exercise programs, they should be aware that a valid comparison with healthy controls can only be made when MVPA is objectively measured.

Six-Year Changes in Myopic Macular Degeneration in Adults of the Singapore Epidemiology of Eye Diseases Study.

Purpose: To examine the 6-year incidence, progression, associated risk factors, and impact of myopic macular degeneration (MMD) in a myopic population in Singapore. Methods: We examined myopic (spherical equivalent ≤-0.5 diopters) adults (N = 2157 persons and 3661 eyes) who were phakic at baseline and participated in both baseline and 6-year follow-up visits of the Singapore Epidemiology of Eye Diseases study. Eye examinations, including visual acuity, subjective refraction and axial length (AL) measurements, were performed. MMD was graded from fundus photographs following the META-PM classification. Vision-related quality of life was assessed with Rasch-transformed scores from reading, mobility, and emotional domains of the Impact of Vision Impairment questionnaire. Results: The 6-year eye-specific incidence of MMD among myopic eyes was 1.2% (95% CI, 0.9%-1.6%). Older age, worse spherical equivalent, and longer AL at baseline were associated with MMD incidence (all P < 0.001). The 6-year eye-specific progression of MMD in 288 eyes with baseline MMD was 17.0% (95% CI, 12.6%-21.4%). More severe MMD at baseline, worse spherical equivalent, and longer AL (all P < 0.05) were associated with MMD progression. Patients with Meta-PM categories 3 and 4 had worse best-corrected visual acuity and poorer vision-related quality of life outcomes than those without MMD (all P < 0.05). Conclusions: Over a 6-year period, one in 80 myopic eyes developed MMD and one in six with existing MMD had MMD progression. Myopia severity and AL were strong predictors of MMD development and progression. Eyes with severe MMD were at higher risk of MMD progression than those with less severe MMD, and were associated with poorer visual acuity and vision-related quality of life.

A comparative study of depressive symptomatology among cataract and age-related macular degeneration patients with impaired vision.

Vision impairment remains an important cause of disability with the leading being age-related cataract (ARC) and age-related macular degeneration (ARMD) with depression symptoms often reported in vision impairment. This is a cross-sectional survey of two groups of fifty patients with ARC and ARMD and no prior psychiatric history on depressive symptomatology. Results indicate that ARMD patients scored higher on the BDI-II than ARC patients, in line with their poorer prognosis. Female patients with ARMD, living alone, with a higher number of other comorbid health issues, are more likely to have more depressive symptomatology. ARMD patients scored higher in the items related to pessimism for the future, feelings of past failure and feelings of self-dislike. There is a need for liaison psychiatry services to be readily available in patients with suspected ARC and ARMD coming forward with substantial vision loss. ARMD patients in particular tend to be more pessimistic and blame themselves for the progression of their disease. This should be taken into consideration with patient education on the causes of the disease and more effort should be undertaken to instill hope. The impact of vision loss on psychic status is related to disease prognosis and not only current state.

Psychometric properties of the Portuguese version of the National Eye Institute Visual Function Questionnaire-25.

BACKGROUND: To investigate the psychometric properties of the Brazilian Portuguese version of the National Eye Institute Visual Function Questionnaire (NEI VFQ-25) questionnaire in a group of patients with different eye diseases. METHODS: Cross-sectional study. All subjects completed the Portuguese version of the NEI VFQ-25 questionnaire. Another questionnaire containing a survey about clinical and demographics data was also applied. Rasch analysis was used to evaluate the psychometric properties of the NEI VFQ-25. RESULTS: The study included 104 patients with cataract, 65 with glaucoma and 83 with age macular degeneration. Mean age was 70.7 ± 9.9 years, with 143 female (56.7%) and 109 male patients (43.2%). Mean visual acuity was 0.47 and 1.17 logMAR in the better and worse eye, respectively. According to Rasch analysis, seven items were found to misfit. Those items belonged to the following subscales: general health, social function, mental health, ocular pain and role limitations. The principal component analysis of the residuals showed that 55.5% of the variance was explained by the principal component. Eight items loaded positively onto the first contrast with a correlation higher than 0.4. These items belonged to the following subscales: near vision, distance vision, mental health and dependency. After excluding those items, we were able to isolate items from the NEI VFQ-25, related only to a visual functioning component. Finally, the principal component analysis from residuals of this revised version of the NEI VFQ-25 (items related to visual function) showed that the principal component explained 61.2% of the variance, showing no evidence of multidimensionality. CONCLUSIONS: The Portuguese version of the NEI VFQ-25 is not a unidimensional instrument. We were able to find items that belong to a different trait, possible related to a socio-emotional component. Thus, in order to obtain psychometrically valid constructs, both the visual functioning and socio-emotional components should be analyzed separately.

Estimating measures of latent variables from m-alternative forced choice responses.

Signal Detection Theory is the standard method used in psychophysics to estimate person ability in m-alternative forced choice tasks where stimuli are typically generated with known physical properties (e.g., size, frequency, contrast, etc …) and lie at known locations on a physical measurement axis. In contrast, variants of Item Response Theory are preferred in fields such as medical research and educational testing where the axis locations of items on questionnaires or multiple choice tests are not defined by any observable physical property and are instead defined by a latent (or unobservable) variable. We provide an extension of Signal Detection Theory to latent variables that employs the same strategy used in Item Response Theory and demonstrate the practical utility of our method by applying it to a set of clinically relevant face perception tasks with visually impaired individuals as subjects. A key advantage of our approach is that Signal Detection Theory explicitly models the m-alternative forced choice task while Item Response Theory does not. We show that Item Response Theory is inconsistent with key assumptions of the m-alternative forced choice task and is not a valid model for this paradigm. However, the simplest Item Response Theory model-the dichotomous Rasch model-is found to be a special case of SDT and provides a good approximation as long as the number of response alternatives m is small and remains fixed for all items.

Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) in a Norwegian population of patients with neovascular age-related macular degeneration compared to a control population.

BACKGROUND: Although visual acuity and optical coherence tomography (OCT) are most widely used as outcomes in treatment of neovascular age-related Macular Degeneration (nAMD), patient reported outcome measures are increasingly recognized. National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) was developed to capture the perceived visual function. Yet, evidence of psychometric performance in the target population is required. The aim of this study was to examine the psychometric properties of NEI-VFQ 25 in a Norwegian cohort of newly diagnosed nAMD patients followed with a Treat and Extend (T/E) protocol. METHODS: Patients receiving intravitreal anti-vascular endothelial growth factor (anti-VEGF) injection treatment according to a T/E protocol completed a Norwegian translation of NEI-VFQ 25, EuroQoL Health Questionnaire (EQ-5D), and Patient acceptable symptom state (PASS 5) at baseline, 3, 6 and 12 months. In addition, a control population completed the same questionnaires. Visual acuity was assessed with LogMar for best/treated eye. Validity testing comprised face validity by a 0-10 numeric rating scale about relevance of NEI-VFQ 25 as well as regression analyses and correlations between NEI-VFQ 25 and other relevant variables. Reliability was examined with Intraclass Correlation Coefficient (ICC) and Cronbach's alpha for internal consistency were performed. Responsiveness, discriminatory power and predictive value were also explored. RESULTS: Number of respondents at baseline, after 3, 6 and 12 months was 197, 186, 176 and 168, respectively. The control population comprised 26 individuals. Face validity of NEI-VFQ 25 had a mean (SD) of 7.8 (1.7) (n = 84). NEI-VFQ was significantly correlated to visual acuity and PASS 5 as well as EQ-5D at baseline. Reliability (ICC) of the overall and sub scores for the patients/controls ranged from 0.49-0.97/0.59-0.97. Cronbach's alpha was 0.61-0.85. Discriminatory power was confirmed by significant differences of the overall score between controls and patients (P < 0.001). NEI-VFQ 25 indicates responsiveness showing overall score improved significantly (P ≤ 0.001) from baseline to 3 months. NEI-VFQ 25, general health and visual acuity at baseline were the strongest predictors for how patients reported vision after 6 months follow-up. CONCLUSION: NEI-VFQ 25 showed acceptable psychometric performance, which supports that the Norwegian version can be used to monitor patients treated for nAMD.

Quality of life among patients with age-related severe macular degeneration assessed using the NEI-VFQ, HADS-A, HADS-D and SF-36 tests. A cross-sectional study.

BACKGROUND: Exudative age-related macular degeneration (e-AMD) may cause severe central vision loss. Patients with e-AMD can experience difficulties in daily basic activities and suffer from psychological problems. Our aim was to assess quality of life (QoL) and anxiety and depression status among patients with e-AMD. DESIGN AND SETTING: Cross-sectional study in a state university. METHODS: We included 200 e-AMD patients and 120 age and gender-matched controls. We assessed QoL using the National Eye Institute Visual Functioning Questionnaire-25 (NEI-VFQ-25) and the Short Form (SF)-36 test; and anxiety and depression status using the Hospital Anxiety Depression Scales A and D (HADS-A and HADS-D). RESULTS: The mean ages in the e-AMD and control groups were 68.40 ± 9.8 and 66.31 ± 8.98, respectively. Visual acuity among e-AMD patients was 0.37 ± 0.31 and 0.39 ± 0.32 in the right and left eyes, respectively. The e-AMD patients performed significantly worse than the controls in NEI-VFQ-25 (P < 0.05 for all items). The proportions of e-AMD patients scoring higher than the cutoffs in HADS-A and HADS-D were significantly higher than among the controls (41.5% versus 12.5% and 63.5% versus 27.5%; P < 0.001). The e-AMD patients had significantly lower mean scores than the controls for each of the SF-36 QoL items (P < 0.001). The NEI-VFQ-25 scores were significantly lower among patients with bilateral e-AMD than among those with unilateral disease (P < 0.05 for all). The HADS scores were positively correlated with duration of e-AMD and patient age, but negatively with vision levels (P < 0.05 for all items). CONCLUSION: The e-AMD patients had higher depression and anxiety scores and lower QoL scores.