Interrater reliability and agreement between children with visual impairment and their parents on participation and quality of life.

PURPOSE: To investigate interrater reliability and agreement between children with visual impairment (VI) and their parents on participation and quality of life and factors associated with disagreement. METHODS: Children 7-17 years and their parents completed the PAI-CY 7-12 (n = 180) and 13-17 (n = 65), the KIDSCREEN-27 (n = 250) and the CASP (n = 70). Mean scores of children and parents were compared, with effect sizes for the differences. Interrater reliability was evaluated using intraclass correlation coefficients (ICCs), whereas agreement was assessed using the Bland-Altman limits of agreement. Linear regression analyses examined child- and proxy-related factors associated with discrepancies. RESULTS: On average, children rated their participation and quality of life as significantly better than their parents on most (sub)scales, but with wide range of disagreement. Effect sizes were large for the PAI-CY 7-12 (0.86) and 13-17 (0.86) and small for the CASP (0.36) and KIDSCREEN-27 (0.18-0.28). Interrater reliability was poor for the PAI-CY 7-12 (ICC = 0.29) and most KIDSCREEN-27 subscales (ICC =0.18-0.32), moderate for the PAI-CY 13-17 (ICC =0.43) and the KIDSCREEN-27 Physical Wellbeing subscale (ICC = 0.46) and good for the CASP (ICC = 0.63). Comorbidity was significantly associated with greater discrepancies on participation scales. CONCLUSION: Children with VI and their parents have different perspectives on the child's participation and quality of life. Disagreement was largest on participation scales and smallest on quality of life subscales, while opposite results were found for interrater reliability. Reports of children and parents seem to be complementary and are both relevant to obtain a complete picture of the burden of VI and relevant to inform healthcare decisions.

Anxiety and depression in patients who receive anti-VEGF treatment and the usability and feasibility of e-mental health support: the E-PsEYE pilot study.

PURPOSE: E-PsEYE is an internet-based, guided self-help course, following the principles of cognitive behavioural therapy, to reduce anxiety and depression in patients with retinal exudative diseases who receive anti-vascular endothelial growth factor (anti-VEGF) treatment. The purpose of this study was to determine the prevalence and related factors of anxiety and depression in this population and evaluate the usability and feasibility of E-PsEYE. METHODS: Symptoms of anxiety and depression and related factors were determined in 90 patients (mean age 77 years, 58% female), based on multiple logistic regression analysis. Five patients with mild to moderate depression/anxiety tested the usability of E-PsEYE. They were asked to think aloud while completing two modules of the intervention and freely explore system features. The feasibility of the total E-PsEYE intervention was tested in 14 patients with mild to moderate depression/anxiety, based on a single arm pre-post study with a follow-up of three months: fidelity, acceptability, feasibility of study methods and potential effectiveness were explored. RESULTS: Fifty-three percent of the total study population experienced at least mild anxiety and/or depression symptoms. Especially female patients (odds ratio (OR) 3.89, 95% confidence interval (CI) 1.33-11.40), those who experienced limitations in daily life activities due to vision loss (OR 9.67; 95% CI 3.18-29.45) and those who experienced loneliness (OR 3.53, 95% CI 1.14-10.95) were more likely to have anxiety/depression. The usability study raised several possibilities for improvement, based on which E-PsEYE was improved. The feasibility study showed adequate fidelity and acceptability. Most participants were satisfied with the results (79%). There was a high response rate, no loss to follow-up and mental health problems decreased in more than half of the patients. The Wilcoxon signed rank test indicated lower post-test ranks compared to pre-test ranks (depression Z -1.34, p = 0.18; anxiety Z -1.45, p = 0.15). CONCLUSIONS: Mental health problems are prevalent in patients who receive anti-VEGF treatment. Healthcare providers should recognise these problems and related factors in order to refer patients to appropriate care in a timely manner. Outcomes on the usability and feasibility of E-PsEYE are promising as a prelude to performing a randomised controlled trial, which will shed more light on its (cost-)effectiveness.

The development of posttraumatic stress disorder in individuals with visual impairment: a systematic search and review.

PURPOSE: Posttraumatic stress disorder (PTSD) is a mental health problem with a negative impact on quality of life. Little is known about the relationship between PTSD and visual impairment. According to diagnostic criteria for PTSD, vision loss in itself is generally not considered as a traumatic event. PTSD in people with visual impairment is more likely to be the result of traumatic events, which are not directly related, or are only indirectly related to, visual impairment. The purpose of this systematic review was to describe and discuss the literature on the development of PTSD in people with visual impairment. METHODS: A literature search in PubMed, Embase, PsycINFO and Web of Science was performed up to 15 November 2019 in collaboration with a medical information specialist. Additional search strategies included hand searches of references of retrieved papers and free-text hand searches in Google Scholar. Thematic content analysis of the extracted data was carried out in order to identify main themes and subthemes. RESULTS: Findings from 13 articles are presented in a narrative manner along three main themes: (1) posttraumatic stress disorder; (2) traumatic events and (3) impact of traumatic events. People with visual impairments may be at higher risk of being exposed to certain potentially traumatic events. Limited/restricted access to situational information during events may contribute to the stressfulness of the experience. Furthermore, visual impairment may shape the impact of traumatic events. CONCLUSIONS: The current evidence suggests some unique experiences and challenges for people who are visually impaired. PTSD was prevalent in this population, and prevalence rates ranged from 4% to 50%. Future research may focus on gaining insight into the extent and burden of PTSD, and exploring help-seeking behaviour and treatment needs among those with visual impairment and PTSD.

Low vision rehabilitation for better quality of life in visually impaired adults.

BACKGROUND: Low vision rehabilitation aims to optimise the use of residual vision after severe vision loss, but also aims to teach skills in order to improve visual functioning in daily life. Other aims include helping people to adapt to permanent vision loss and improving psychosocial functioning. These skills promote independence and active participation in society. Low vision rehabilitation should ultimately improve quality of life (QOL) for people who have visual impairment. OBJECTIVES: To assess the effectiveness of low vision rehabilitation interventions on health-related QOL (HRQOL), vision-related QOL (VRQOL) or visual functioning and other closely related patient-reported outcomes in visually impaired adults. SEARCH METHODS: We searched relevant electronic databases and trials registers up to 18 September 2019. SELECTION CRITERIA: We included randomised controlled trials (RCTs) investigating HRQOL, VRQOL and related outcomes of adults, with an irreversible visual impairment (World Health Organization criteria). We included studies that compared rehabilitation interventions with active or inactive control. DATA COLLECTION AND ANALYSIS: We used standard methods expected by Cochrane. We assessed the certainty of the evidence using the GRADE approach. MAIN RESULTS: We included 44 studies (73 reports) conducted in North America, Australia, Europe and Asia. Considering the clinical diversity of low vision rehabilitation interventions, the studies were categorised into four groups of related intervention types (and by comparator): (1) psychological therapies and/or group programmes, (2) methods of enhancing vision, (3) multidisciplinary rehabilitation programmes, (4) other programmes. Comparators were no care or waiting list as an inactive control group, usual care or other active control group. Participants included in the reported studies were mainly older adults with visual impairment or blindness, often as a result of age-related macular degeneration (AMD). Study settings were often hospitals or low vision rehabilitation services. Effects were measured at the short-term (six months or less) in most studies. Not all studies reported on funding, but those who did were supported by public or non-profit funders (N = 31), except for two studies. Compared to inactive comparators, we found very low-certainty evidence of no beneficial effects on HRQOL that was imprecisely estimated for psychological therapies and/or group programmes (SMD 0.26, 95% CI -0.28 to 0.80; participants = 183; studies = 1) and an imprecise estimate suggesting little or no effect of multidisciplinary rehabilitation programmes (SMD -0.08, 95% CI -0.37 to 0.21; participants = 183; studies = 2; I2 = 0%); no data were available for methods of enhancing vision or other programmes. Regarding VRQOL, we found low- or very low-certainty evidence of imprecisely estimated benefit with psychological therapies and/or group programmes (SMD -0.23, 95% CI -0.53 to 0.08; studies = 2; I2 = 24%) and methods of enhancing vision (SMD -0.19, 95% CI -0.54 to 0.15; participants = 262; studies = 5; I2 = 34%). Two studies using multidisciplinary rehabilitation programmes showed beneficial but inconsistent results, of which one study, which was at low risk of bias and used intensive rehabilitation, recorded a very large and significant effect (SMD: -1.64, 95% CI -2.05 to -1.24), and the other a small and uncertain effect (SMD -0.42, 95%: -0.90 to 0.07). Compared to active comparators, we found very low-certainty evidence of small or no beneficial effects on HRQOL that were imprecisely estimated with psychological therapies and/or group programmes including no difference (SMD -0.09, 95% CI -0.39 to 0.20; participants = 600; studies = 4; I2 = 67%). We also found very low-certainty evidence of small or no beneficial effects with methods of enhancing vision, that were imprecisely estimated (SMD -0.09, 95% CI -0.28 to 0.09; participants = 443; studies = 2; I2 = 0%) and multidisciplinary rehabilitation programmes (SMD -0.10, 95% CI -0.31 to 0.12; participants = 375; studies = 2; I2 = 0%). Concerning VRQOL, low-certainty evidence of small or no beneficial effects that were imprecisely estimated, was found with psychological therapies and/or group programmes (SMD -0.11, 95% CI -0.24 to 0.01; participants = 1245; studies = 7; I2 = 19%) and moderate-certainty evidence of small effects with methods of enhancing vision (SMD -0.24, 95% CI -0.40 to -0.08; participants = 660; studies = 7; I2 = 16%). No additional benefit was found with multidisciplinary rehabilitation programmes (SMD 0.01, 95% CI -0.18 to 0.20; participants = 464; studies = 3; I2 = 0%; low-certainty evidence). Among secondary outcomes, very low-certainty evidence of a significant and large, but imprecisely estimated benefit on self-efficacy or self-esteem was found for psychological therapies and/or group programmes versus waiting list or no care (SMD -0.85, 95% CI -1.48 to -0.22; participants = 456; studies = 5; I2 = 91%). In addition, very low-certainty evidence of a significant and large estimated benefit on depression was found for psychological therapies and/or group programmes versus waiting list or no care (SMD -1.23, 95% CI -2.18 to -0.28; participants = 456; studies = 5; I2 = 94%), and moderate-certainty evidence of a small benefit versus usual care (SMD -0.14, 95% CI -0.25 to -0.04; participants = 1334; studies = 9; I2 = 0%). ln the few studies in which (serious) adverse events were reported, these seemed unrelated to low vision rehabilitation. AUTHORS' CONCLUSIONS: In this Cochrane Review, no evidence of benefit was found of diverse types of low vision rehabilitation interventions on HRQOL. We found low- and moderate-certainty evidence, respectively, of a small benefit on VRQOL in studies comparing psychological therapies or methods for enhancing vision with active comparators. The type of rehabilitation varied among studies, even within intervention groups, but benefits were detected even if compared to active control groups. Studies were conducted on adults with visual impairment mainly of older age, living in high-income countries and often having AMD. Most of the included studies on low vision rehabilitation had a short follow-up, Despite these limitations, the consistent direction of the effects in this review towards benefit justifies further research activities of better methodological quality including longer maintenance effects and costs of several types of low vision rehabilitation. Research on the working mechanisms of components of rehabilitation interventions in different settings, including low-income countries, is also needed.

Visual and personal characteristics are associated with reading performance in normally sighted adults.

BACKGROUND: Visual acuity (VA) only slightly explains variability in reading performance, whereas other visual and non-visual parameters have been reported to influence reading performance; however, in ophthalmologic and optometric clinical practice and research, where standardised reading tests are used, many of these parameters are often neglected. The purpose of this study was to give insight into how various visual and non-visual parameters are associated with reading performance in normally sighted subjects. In addition, reading speed over time was investigated to observe the influence of prolonged reading on standardised test performance. METHODS: Reading speed and the number of mistakes were assessed with long text paragraphs obtained from the International Reading Speed Texts (IReST) and short sentences obtained from the Radner Reading Charts in 71 persons (mean age: 55 years, range: 18 to 86 years) with a binocular distance VA of logMAR 0.20 or better. For each of the variables (distance and near VA, contrast sensitivity, stray light, age, sex, educational level, habitual reading hours and reading affinity), the association with reading performance was investigated with multivariate linear regression models. Reading performance over time was assessed with linear mixed models. RESULTS: Contrast sensitivity was independently associated with reading speed (IReST paragraphs p = 0.002, Radner sentences p = 0.021). An interaction between age and education was found for both reading tests (p = 0.001), at an older age, reading speed was less influenced by educational level. Reading speed remained stable over time. CONCLUSION: The present study shows that contrast sensitivity was independently associated with reading speed and an interaction effect was found between age and education. As these tests are easy to administer, it is recommended to assess them in clinical practice and scientific research. When using standardised tests in healthy subjects, prolonged reading proved not to be an issue for reading durations up to about 23 minutes.