Perspectives of Patients and Professionals on Implementing a Computer Adaptive Vision-Related Quality of Life Outcome (CAT-EyeQ) in Clinical Practice.

Purpose: The CAT-EyeQ is a computer adaptive test (CAT) which measures vision-related quality of life in patients having exudative retinal diseases. The aim of this study is to investigate the usability of the CAT-EyeQ in clinical practice and identify potential barriers and facilitators for implementation (problem analysis). Methods: Patients and health care professionals participated in the study regarding the usability of the CAT-EyeQ, and clinic managers and health care professionals were included in the problem analysis for implementation. In total, we conducted 18 semi-structured interviews. The Consolidated Framework for Implementation Research (CFIR) was used to develop the interview guides and to structure results. Results: Six themes were derived from the usability study and problem analysis: (1) quality of the CAT-EyeQ and the applicability to patients' needs and preferences, (2) embedding the CAT-EyeQ in current practice, (3) implementation climate of the eye hospitals, (4) attitude of professionals, (5) engaging and encouraging professionals, and (6) integration of the CAT-EyeQ in health care - needs after piloting. Conclusions: Patients and professionals mentioned that the CAT-EyeQ improved insight into the impact of eye diseases on a patient's daily life, it allowed for more attention on the patient perspective and the structured measurement of vision-related quality of life. The main perceived barriers mentioned by professionals for using the CAT-EyeQ were lack of time and the integration of the patient-reported outcome measure (PROM) results within the electronic patient record (EPR). Translational Relevance: The CAT-EyeQ, accompanied by an overview of stakeholder perspectives resulting from this implementation study, can now be used in clinical practice.

A retrospective big data study using healthcare insurance claims to investigate the role of comorbidities in receiving low vision services.

Introduction: The aim was to examine the association between physical and mental comorbidity with receiving low vision services (LVS). Methods: A retrospective study based on Dutch claims data of health insurers was performed. We retrieved data (2015-2018) of patients (≥18 years) with eye diseases causing severe vision loss who received LVS at Dutch rehabilitation organizations in 2018 (target group) and patients who did not receive LVS, but who received ophthalmic medical specialist care for glaucoma, macular, diabetic retinal and/or retinal diseases in 2018 (reference group). For examining the association between the patients' comorbidities and receiving LVS, multivariable logistic regression was used. The relative quality of five different models was assessed with the Akaike Information Criterion (AIC). Results: The study population consisted of 574,262 patients, of which 8,766 in the target group and 565,496 in the reference group. Physical comorbidity was found in 83% and 14% had mental comorbidity. After adjustment for all assumed confounders, both physical and mental comorbidity remained significantly associated with receiving LVS. In the adjusted model, which also included both comorbidity variables, the best relative quality was found to describe the association between mental and physical comorbidity and receiving LVS. Conclusions: Mental comorbidity seemed to be independently associated with receiving LVS, implying that the odds for receiving a LVS referral are higher in patients who are vulnerable to mental comorbidity. Physical comorbidity was independently associated, however, the association with receiving LVS might not be that meaningful in terms of policy implications. Providing mental healthcare interventions for people with VI seems warranted.

Usability and feasibility of E-nergEYEze: a blended vision-specific E-health based cognitive behavioral therapy and self-management intervention to reduce fatigue in adults with visual impairment.

BACKGROUND: Over 50% of adults with visual impairment experience severe fatigue. Therefore, we developed a guided E-health intervention based on cognitive behavioral therapy and self-management to reduce fatigue in this population. This pilot study evaluated the usability, feasibility, fidelity and potential effectiveness of E-nergEYEze. METHODS: E-nergEYEze was developed by a design team and customized by conducting a pilot study using an iterative development strategy. The intervention was first tested in a usability study among adults with visual impairment (n = 5). Participants were asked to think-aloud while exploring the intervention features and a semi-structured interview was performed afterwards. Subsequently, the enhanced intervention was tested in a feasibility study. Adults with visual impairment and severe fatigue (n = 10) followed the intervention partially with guidance from a social worker and one-time computer trainer support. Fatigue severity (Checklist Individual Strength), fatigue impact (Modified Fatigue Impact Scale) and cognitive behavioral therapy skills (Competencies of Cognitive Therapy Scale-Self Report) were measured at baseline and at three months follow-up and analyzed with the Wilcoxon signed-rank test. The intervention was evaluated through evaluation forms. RESULTS: The usability study resulted in adjustments to content and lay-out with regard to optically shortened text sentences, separate pages for information and assignments with one read-aloud audio and an additional descriptive explanation of page content. Digital challenges were overcome with mandatory computer training and e-platform modifications. The feasibility study showed a positive trend in reducing fatigue severity (Z -6.108; P < .001; SD 8.4), impact of fatigue (Z - 4.451; P < .001; SD 11.4) and cognitive behavioral therapy skills (Z -2.278; P = .023; SD 19.3). Participants gave useful feedback regarding accessibility, content and guidance, with an overall positive experience. The intervention was rated with a median score of 8 (range 7-10). CONCLUSION: We developed, evaluated and optimized E-nergEYEze by applying a user-centered and iterative approach. E-nergEYEze showed a promising trend to reduce fatigue severity and impact of fatigue and to increase cognitive behavioral therapy skills. The study methods were feasible and the fidelity of the intervention protocol was suitable. Performing a randomized controlled trial is warranted to give insight into whether E-nergEYEze is cost-effective in reducing severe fatigue in adults with visual impairment. TRIAL REGISTRATION: International Clinical Trial Registry Platform: NL7764. Date registered: 28-05-2019.

Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: a qualitative study.

BACKGROUND: Underutilization of and lack of access to low vision services (LVS) has been reported internationally. The purpose of this study was to identify barriers and facilitators in LVS referral procedures and service delivery from both the perspective of people with visual impairment and professionals from different eye care providers in the Netherlands. METHODS: A qualitative study in the Netherlands was conducted. Barriers and facilitators were explored through semi structured interviews with older adults with macular degeneration, diabetic retinopathy and/or glaucoma (n = 14), and healthcare professionals including ophthalmologists and LVS professionals (n = 16). Framework analysis was used for analyzing the interviews with Atlas.ti software. RESULTS: According to both patients and professionals, facilitators in LVS access and utilization are having motivation, self-advocacy, high participation needs and social support, as well as being negatively impacted by the impairment. Both samples found having good communication skills and informing patients about LVS as a healthcare provider to facilitate access. A long patient-provider relationship and the Dutch healthcare system were also mentioned as facilitators. Professionals additionally found long disease duration and the presence of low vision optometric services in the ophthalmic practice to promote access. Barriers that were reported by patients and professionals are lack of motivation, self-advocacy and acceptance of the impairment in patients. In addition, having low participation needs as a patient, lack of information provision by providers and time constraints in the ophthalmic practice were mentioned as barriers. Professionals also reported lack of social support, short disease duration of patients, a short patient-provider relationship and lack of coordination of care in the ophthalmic practice to hinder access. CONCLUSIONS: Findings suggest that providers' lack of information provision about LVS, especially to patients who are less assertive, hamper referral to LVS. Providers should have attention for patients' LVS needs and actively inform them and their social network about LVS to facilitate access. Educating and training providers about how and when to address LVS may help to reduce barriers in the referral pathways. In addition, referral procedures may benefit from tools that make providers more aware of LVS.

Translation and content validity of the Dutch Impact of Vision Impairment questionnaire assessed by Three-Step Test-Interviewing.

BACKGROUND: Patients suffering from exsudative retinal diseases may experience severe central vision loss and this might have impact on their daily activities and quality of life. To measure the disabilities these patients may have, the use of the Impact of Vision Impairment Profile questionnaire is recommended. The aim of this study was to translate the original English 28-item Impact of Vision Impairment Profile (IVI) into the Dutch language and evaluate its comprehensibility, comprehensiveness and relevance as evidence of content validity. The translation process was performed using standardized methods. Content validity was assessed by cognitive debriefing using a Three-Step Test-Interview (TSTI) method for participants diagnosed with exudative retinal diseases. Step 1 and 2 focused on assessment of comprehensibility of items, step 3 on comprehensiveness and relevance. Audio-recorded qualitative data was analyzed using Atlas.ti. Data regarding comprehensibility problems was further categorized into item-specific problems and general problems. RESULTS: Few minor discrepancies in wording were found after translation. After conducting 12 cognitive interviews, data saturation was reached. All participants reported comprehensibility problems resulting from specific items, these were; sentence structure, vocabulary and formulation, influence of conditions or composite items and influence of comorbid disorders. Several general comprehensibility problems resulting from instructions or response categories were detected. The main general comprehensibility problem resulted from the layout of the Dutch-IVI. Most participants considered the included items as relevant and indicated that they covered the problems that occur due to vision impairment. CONCLUSIONS: Minor problems in the Dutch translation were detected and adjusted. The layout and instructions of the Dutch-IVI resulted in some comprehensibility problems. The Dutch-IVI appeared to be at risk of being interpreted as a generic patient reported outcome measure, instead of a disease-specific instrument, mainly due to the influence of co-morbidities. Adaptations should improve validity and reliability of the Dutch-IVI, however, cross-cultural comparisons may be at stake.

Mastery and self-esteem mediate the association between visual acuity and mental health: a population-based longitudinal cohort study.

BACKGROUND: With deteriorating eyesight, people often become dependent on others for many aspects of their daily lives. As a result, they feel less 'in control' and experience lower self-esteem. Lower sense of mastery and self-esteem are known to predict depression, but their roles in people with visual impairment have only marginally been investigated. Therefore, this study aimed to determine the influence of mastery and self-esteem on the relationship between visual acuity and mental health. METHODS: A longitudinal cohort study was performed using data from the Longitudinal Aging Study Amsterdam (LASA), collected between 2001 and 2012. A community-based population of 2599 older adults were included, who were randomly selected from population registers. Outcomes of interest were the Pearlin Mastery Scale, Rosenberg Self-Esteem Scale, Center for Epidemiologic Studies - Depression scale and the Hospital Anxiety Depression Scale - Anxiety subscale. Linear mixed models were used to establish the association between visual acuity and mental health over time. RESULTS: Mean age was 72 years, 56% was female and 1.2% qualified as having low vision. Visual impairment was associated with a lower sense of mastery (ß = - 0.477, p < 0.001), lower self-esteem (ß = - 0.166, p = 0.008) and more depression (ß = 0.235, p < 0.001). No significant association between visual acuity and anxiety was found. The relationship between visual acuity and depression was mediated by self-esteem (25%) and sense of mastery (79%). CONCLUSIONS: Vision loss was associated with depression. This association was mediated by self-esteem and sense of mastery. This provides us with new possibilities to identify, support and treat those at risk for developing depression by aiming to increase their self-esteem and sense of mastery.

Prevalence and Pattern of Geographic Atrophy in Asia: The Asian Eye Epidemiology Consortium.

PURPOSE: Although there have been many population-based studies of age-related macular degeneration (AMD), only limited information is available in Asia on the epidemiology of geographic atrophy (GA). We aimed to determine the prevalence and patterns of GA through an analysis of multiple studies conducted within the Asian Eye Epidemiology Consortium (AEEC). DESIGN: Cross-sectional meta-analyses. PARTICIPANTS: A total of 97 213 individuals aged 40 years and older. METHODS: Data from 22 population-based studies from countries belonging to the AEEC were included. In all studies, AMD was defined on the basis of standardized grading systems. Geographic atrophy was defined as an area of pallor in the fundus with visibility of the underlying choroidal blood vessels and sharply defined borders. Random-effects meta-analysis was performed to estimate overall and age-, gender-, and region-specific pooled prevalence of GA. MAIN OUTCOME MEASURES: Prevalence of GA per 1000 persons. RESULTS: The mean age was 60.8 ± 10.0 years, and 42 673 (43.9%) were male. Overall, a total of 223 individuals (0.2%) had GA. The pooled overall prevalence of GA was 1.57 per 1000 persons (95% confidence interval [CI], 1.04-2.10), which was 3 times less than that of neovascular AMD of 5.20 per 1000 persons (95% CI, 3.97-6.43). Compared with those aged 50 to 59 years, the prevalence of GA increased from 0.34 per 1000 persons (95% CI, 0.07-0.62) to 2.90 per 1000 persons (95% CI, 1.55-4.25) in those aged ≥70 years. The GA prevalence per 1000 persons was similar between urban (2.22; 95% CI, 1.22-3.23) and rural residents (1.33; 95% CI, 0.70-1.96). Geographic atrophy was more prevalent in South Asia (based on studies from India and Nepal, 3.82 per 1000 persons; 95% CI, 1.72-5.93) compared with East Asia (based on studies from China, Korea, Hong Kong, Taiwan, and Japan, and the Singapore Chinese Eye Study, 0.76 per 1000 persons; 95% CI, 0.31-1.22, P = 0.005). CONCLUSIONS: Geographic atrophy is uncommon in Asian populations compared with those of European ancestry. Even within Asia, geographic differences in GA prevalence were seen. The findings of this meta-analysis suggest that better dissection of risk factors in the Asian population for GA may provide insights into the biological pathways that drive these late-stage manifestations, thus suggesting better targets for prevention.

Prevalence and causes of low vision and blindness in an elderly population in Nepal: the Bhaktapur retina study.

BACKGROUND: This study aims to explore the prevalence and causes of low vision and blindness focused on retinal disease in a population above 60 years in Nepal. METHODS: Two thousand one hundred subjects were enrolled in a population-based cross-sectional study. History, presenting and best corrected visual acuity after subjective refraction, anterior and posterior segment examinations was obtained in detail. RESULTS: Among the total subjects, 1860 (88.57%) had complete information. Age varies from 60 to 95 (mean age: 69.64 ± 7.31) years. Low vision and blindness in both eyes at presentation was found in 984 (52.90%, 95% confidence interval (CI): 50.60-55.19) and 36 (1.94%, 95% CI: 1.35-2.66) subjects respectively. After best correction, bilateral low vision and blindness was found in 426 (22.92%, 95% CI: 21.01-24.88), and 30 (1.61%, 95% CI: 0.10-2.30) subjects respectively. As compared to 60-69 years old, risk of visual impairment was four times higher (95% CI:3.26-5.58) in the 70-79 year olds and 14 times higher (95% CI: 9.72-19.73) in the age group 80 years and above. Major causes of bilateral low vision were cataract (68.07%), followed by retinal disorders (28.64%), and for blindness; retinal disorders (46.66%), followed by cataract (43.33%). Illiteracy was significantly associated with visual impairment. CONCLUSION: Among the elderly population, prevalence of visual impairment was high. Refractive error, cataract and retinal disorders were the major cause of low vision. Screening the population at the age 60 years and above, focused on cataract and posterior segment diseases, providing glasses and timely referral can help reduce visual impairment.

Low vision aids for visually impaired children: a perception-action perspective.

It is a widely accepted belief in clinical practice that children with a visual impairment can profit from the use of a low vision aid (LVA). However, we found a considerable gap in our scientific understanding of LVA use, particularly in young children. This is the reason for the analysis presented in this paper. A selected overview of LVA use in adults is given, from which valuable insights are taken. Additionally, an action perspective for analysing LVA use is discussed as well as the results of tool-use studies in children. Mainly based on these three ingredients, we developed a conceptual framework for LVA use. The framework consists of three interacting relations between LVA, child and task. Performance of a particular child on a specific task with a certain LVA is constrained by the following three reciprocal and dynamic relations: the Child-to-Task relation (related to goal-information), the Child-to-LVA relation (related to control-information), and the LVA-to-Task relation (related to topology information).

Effects and feasibility of a standardised orientation and mobility training in using an identification cane for older adults with low vision: design of a randomised controlled trial.

BACKGROUND: Orientation and mobility training (O&M-training) in using an identification cane, also called symbol cane, is provided to people with low vision to facilitate independent participation in the community. In The Netherlands this training is mainly practice-based because a standardised and validly evaluated O&M-training in using the identification cane is lacking. Recently a standardised O&M-training in using the identification cane was developed. This training consists of two face-to-face sessions and one telephone session during which, in addition to usual care, the client's needs regarding mobility are prioritised, and cognitive restructuring techniques, action planning and contracting are applied to facilitate the use of the cane. This paper presents the design of a randomised controlled trial aimed to evaluate this standardised O&M-training in using the identification cane in older adults with low vision. METHODS/DESIGN: A parallel group randomised controlled trial was designed to compare the standardised O&M-training with usual care, i.e. the O&M-training commonly provided by the mobility trainer. Community-dwelling older people who ask for support at a rehabilitation centre for people with visual impairment and who are likely to receive an O&M-training in using the identification cane are included in the trial (N = 190). The primary outcomes of the effect evaluation are ADL self care and visual functioning with respect to distance activities and mobility. Secondary outcomes include quality of life, feelings of anxiety, symptoms of depression, fear of falling, and falls history. Data for the effect evaluation are collected by means of telephone interviews at baseline, and at 5 and 17 weeks after the start of the O&M-training. In addition to an effect evaluation, a process evaluation to study the feasibility of the O&M-training is carried out. DISCUSSION: The screening procedure for eligible participants started in November 2007 and will continue until October 2009. Preliminary findings regarding the evaluation are expected in the course of 2010. If the standardised O&M-training is more effective than the current O&M-training or, in case of equal effectiveness, is considered more feasible, the training will be embedded in the Dutch national instruction for mobility trainers. TRIAL REGISTRATION: ClinicalTrials.gov NCT00946062.

[Elderly people with visual impairment in The Netherlands]. / Visuele beperkingen bij ouderen in Nederland--risicogroepen en mogelijkheden tot interventie.

AIM: To estimate the number of elderly people with visual impairment in The Netherlands, now and in the future. Possibilities for intervention are discussed. METHODS AND MATERIALS: Estimates are based on a recent report on behalf of Foundation InZicht, ZonMw, in which prevalence data from population-based studies on blindness and low vision and its causes in The Netherlands, western Europe, The United States and Australia are related to the latest demographic data for The Netherlands. RESULTS: Of the 16.4 million Dutch in 2008 2.4 million (14.7%) are 65 years of age and older. Of this last group 155,000 persons are living in nursing homes or residential homes, the others are living in their own homes. In 2008 an estimated 77,000 persons are blind and 234,000 have low vision. Of them 79% is 65 years of age or older. Of the older people in care institutions 20% is blind (32,000) and 22% has low vision (34,000). In 62% of them the visual impairment is treatable or could have been prevented ('avoidable'). Of the older people living independently 1.2% is blind (27,000) and 6.8% has low vision (154,000). In 57% of them the affliction is avoidable. CONCLUSION: In 2008 247,000 elderly suffer from a visual impairment that could have been treated or prevented in 143,000 (58%) of them. Screening and treatment of elderly in care institutions seems indicated, as is health education to and goal-oriented screening of elderly who live independently.

Evaluation of cross-sectional and longitudinal construct validity of two vision-related quality of life questionnaires: the LVQOL and VCM1.

The Low Vision Quality of Life (LVQOL) questionnaire and the Vision-related Quality of Life Core Measure (VCM1) are two of the many vision-related quality of life (QOL) questionnaires that have been developed in recent years. Although psychometric properties of the LVQOL and VCM1 compare well with other vision-related QOL questionnaires, construct and longitudinal validity have not been assessed (adequately). The purpose of this study was to examine the cross-sectional and longitudinal construct validity of these questionnaires by testing specific pre-specified hypotheses about the relations of these questionnaires with other measures. The percentage of hypotheses regarding the cross-sectional construct validity that were refuted for the LVQOL was 22% for the basic aspects of vision subscale, 50% for the mobility subscale, 39% for the adjustment subscale and 17% for the reading and fine work subscale. For the VCM1 this percentage was 57%. For the longitudinal construct validity the percentage of hypotheses that were refuted ranged from 33 to 75% for the LVQOL subscales and was 50% for the VCM1. In conclusion, cross-sectional construct validity was satisfactory for the LVQOL subscales, but seemed poor for the VCM1. In addition, the longitudinal validity of these scales was poor to moderate.

[Referral for rehabilitation in case of permanent visual handicap; guideline of the Dutch Society of Ophthalmology]. / Verwijzing naar revalidatie bij blijvende visuele beperkingen; richtlijn van het Nederlands Oogheelkundig Gezelschap.

The Dutch Society of Ophthalmology (NOG) has developed an evidence-based guideline for the referral of visually impaired people for rehabilitation and support. Referral for rehabilitation and support must be preceded by diagnosis and treatment. Consultation of an ophthalmologist is essential. Information about the disease should be given to the patient orally as well as in writing. The ophthalmologist brings up the possibility of rehabilitation in the presence of a visual acuity < 0.5 and/or visual field of < 30 degrees in the better eye and a well-defined request for help. Visually impaired patients with a relatively simple request for help are referred to a specialised optometrist whenever possible. Visually impaired patients with more complex requests for help are referred to a multidisciplinary (regional or national) rehabilitation centre for people with a visual handicap. Visually impaired and blind patients are informed about the existence of patient organisations. Referral for rehabilitation is done by means of a structured letter with all relevant information. A copy of this letter should be sent to the family physician and all other attending physicians.

Evidence-based guidelines on the referral of visually impaired persons to low vision services.

PURPOSE: One to two percent of the population in the Western world is visually impaired or blind. For most of these people there is no curative therapy. Therefore, the Dutch Ophthalmic Society has taken the initiative to develop an evidence-based guideline for the referral of visually impaired persons to low vision services. METHODS: A systematic literature search was performed in the Embase (1991-2001) and Medline (1966-2003) databases. Literature was searched for definitions of visual impairment, for physician-patient communication, and for outcome of interventions for visually impaired persons. Results of the articles that were selected were summarized and rated according to the level of evidence. Other considerations such as the current organization of rehabilitation for visually impaired persons in the Netherlands were also taken into account. RESULTS: The World Health Organization criteria were slightly adapted in order to include all people who experience problems with reading and other daily life activities due to visual impairment. A large number of recommendations were devised. Among these is that the complete diagnosis should be communicated to the patient and that a second appointment should be offered in which the diagnosis and potential treatment options are discussed again. Another recommendation is that in general visually impaired adults eligible for referral should be referred for the provision of low vision aids and that patients with complex problems or extensive rehabilitative demand should be referred to a rehabilitation center. CONCLUSIONS: This article presents a summary of the first European evidence-based guideline for the referral of visually impaired persons.