Health economic evaluation of a nurse-assisted online eye screening in home healthcare to reduce avoidable vision impairment (iScreen): study protocol for a cluster randomized controlled trial.

BACKGROUND: Among older people undiagnosed and untreated vision impairment and blindness are common. The leading causes are uncorrected refractive errors and cataracts. Vision problems are associated with a lower quality of life, several health problems, and a higher chance of falling accidents and fractures. To eliminate avoidable vision impairment and blindness, targeted eye screening programs are recommended. Older patients, receiving home healthcare, have not yet been considered as a population at risk who could benefit from eye screening. METHODS: A cluster-randomized controlled trial will be conducted to investigate the cost-effectiveness and cost-utility of online nurse-assisted eye screening in home healthcare, compared to care as usual, in reducing avoidable vision impairment. A healthcare and societal perspective will be used. The study will be performed in collaboration with several home healthcare organizations in the Netherlands. The online eye screening consists of near and distance visual acuity, followed by an Amsler grading test. Measurements in both groups will take place at baseline and after 6 and 12 months of follow-up. A total of 240 participants will be recruited. Older men and women (65 +), who receive home-based nursing and are cognitively able to participate, will be included. The primary outcome will be the change of two lines or more on the Colenbrander-1 M visual acuity chart between baseline and 12-month follow-up. DISCUSSION: An eye screening for populations at risk contributes to the detection of undiagnosed and untreated vision impairment. This may reduce the health-related consequences of vision loss and the high economic burden associated with vision impairment. TRIAL REGISTRATION: ClinicalTrials.gov NCT06058637. Registered on 27 September 2023.

Sleep Patterns in Children With Blindness: A Comparison With Normally Sighted Peers.

Purpose: Studies showing problematic sleep patterns in blind and visually impaired children are often based on (parent) self-report. The purpose was to compare sleep patterns of blind children to normally sighted peers using objective measures. Methods: In this cross-sectional study, 100 blind (best-corrected visual acuity <3/60) and 100 age- and gender-matched normally sighted children aged 7 to 17 years wore a digital activity monitoring device for 1 week. Sleep quantity (i.e., total sleep time and total time in bed) and sleep quality (number of awakenings, latency, efficiency, wake after sleep onset [WASO], and sleep fragmentation index) were measured. Adjusted linear regression analyses were used to model group differences in sleep parameters. Results: Data of 163 children were included. Blind children spent significantly less total time in bed in minutes (ß, -31; 95% confidence interval, -56 to -6) and had a lower total sleep time (-41; -66 to -17), smaller number of awakenings (-2.8; -4.5 to -1.0), a lower WASO (-10; -16 to -5), and a more efficient sleep pattern (1.5; 0.1 to 2.8) compared to normally sighted children. Conclusions: Although sleep quantity and recommended hours of sleep per night were lower among blind children than normally sighted children, their sleep quality was better. This contradicts findings of self-report studies and warrants further studies to measure sleep objectively. Further, the discrepancy between previous findings and our findings regarding sleep quality may be explained by the house rules of the boarding schools attended by blind children, which may facilitate improved sleep hygiene.

TREYESCAN: configuration of an eye tracking test for the measurement of compensatory eye movements in patients with visual field defects.

The Traffic Eye Scanning and Compensation Analyzer (TREYESCAN) is introduced as an innovative eye tracking test designed to measure compensatory eye movements in individuals with visual field defects. The primary objective of the test is to quantitatively assess and analyze the compensatory eye movements employed by patients with visual field defects while viewing videos of various traffic scenes from the viewpoint of a driver of a passenger car. The filming process involved capturing a wide range of driving conditions and hazards, aiming to replicate real-world scenarios. Specific dynamic areas of interest within these scenes were selected and assessed by a panel of experts on medical and practical fitness to drive. Pilot measurements were conducted on a sample of 20 normally-sighted individuals during two different measurement sessions. The results provide valuable insights into how individuals without visual impairment view the dynamic scenes presented in the test. Moving forward, the TREYESCAN will be used in a case-control study involving glaucoma patients and control subjects, with the goal of further investigating and understanding the mechanisms employed by individuals with glaucoma to compensate for their visual field defects.

The evaluation of an online nurse-assisted eye-screening tool in older adults receiving home healthcare.

PURPOSE: To investigate the agreement between an online nurse-assisted eye-screening tool and reference tests in older adults receiving home healthcare and to collect user experiences. METHODS: Older adults (65+) receiving home healthcare were included. Home healthcare nurses assisted in administering the eye-screening tool at participants' homes. Approximately 2 weeks later, a researcher administered reference tests at participants' homes. Experiences from participants and home healthcare nurses were collected. Agreement in outcomes (distance and near visual acuity, with the latter being measured using two different optotypes, and macular problems) between the eye-screening tool and reference clinical testing was compared. A difference of less than ±0.15 logMAR was considered acceptable. RESULTS: A total of 40 participants were included. Here, we describe the results for the right eye; results for the left eye were similar. The mean difference between the eye-screening tool and reference tests for distance visual acuity was 0.02 logMAR. The mean difference between the eye-screening tool and reference tests using two different optotypes for near visual acuity was 0.06 and 0.03 logMAR, respectively. The majority of the individual data points were within the ±0.15 logMAR threshold (75%, 51% and 58%, respectively). The agreement between tests for macular problems was 75%. Participants and home healthcare nurses were generally satisfied with the eye-screening tool, although remarks for further improvements were made. CONCLUSIONS: The eye-screening tool is promising for nurse-assisted eye screening in older adults receiving home healthcare, with the mostly satisfactory agreement. After implementing the eye-screening tool in practice, cost-effectiveness needs to be investigated.

A toolkit for wide-screen dynamic area of interest measurements using the Pupil Labs Core Eye Tracker.

Eye tracking measurements taken while watching a wide field screen are challenging to perform. Commercially available remote eye trackers typically do not measure more than 35 degrees in eccentricity. Analysis software was developed using the Pupil Core Eye Tracking data to analyze viewing behavior under circumstances as natural as possible, on a 1.55-m-wide screen allowing free head movements. Additionally, dynamic area of interest (AOI) analyses were performed on data of participants viewing traffic scenes. A toolkit was created including software for simple allocation of dynamic AOIs (semi-automatically and manually), measurement of parameters such as dwell times and time to first entry, and overlaying gaze and AOIs on video. Participants (n =11) were asked to look at 13 dynamic AOIs in traffic scenes from appearance to disappearance in order to validate the setup and software. Different AOI margins were explored for the included objects. The median ratio between total appearance time and dwell time was about 90% for most objects when appropriate margins were chosen. This validated open-source toolkit is readily available for researchers who want to perform dynamic AOI analyses with the Pupil Core eye tracker, especially when measurements are desired on a wide screen, in various fields such as psychology, transportation, and low vision research.

Optimizing Computer Adaptive Test Performance: A Hybrid Simulation Study to Customize the Administration Rules of the CAT-EyeQ in Macular Edema Patients.

Purpose: In previous research the EyeQ item bank, which measures vision-related quality of life (Vr-QoL), was calibrated for future use as a computer adaptive test (CAT). The aim of the current study was to define optimal administration rules. Methods: CAT simulations were performed using real responses. Patients (N = 704; mean age, 76.2 years), having macular edema completed the EyeQ. Four CAT simulations were performed, which were set with different administration rules regarding length, accuracy level and the association with best health, which means the test was aborted after the first 4 responses of having no complaints. Results: The CATDefault showed a mean test length of 6.9 and 15.1% unreliable estimations. Extending the test length to 15 items (CATAlt1) resulted in a mean test length of 7.3 and slightly decreased the percentage unreliable estimations (11.5%). Under CATAlt2, the percentage unreliable estimations was 15.1% and the mean test length was 9.7. Percentages of floor/ceiling effects for CATDefault, CATAlt1, and CATAlt2 were 3.1, 3.0, and 3.1, respectively. CATBestHealth reduced the mean test length to 5.9 and showed 18.2% unreliably estimated patients, of which 14.2% had floor/ceiling scores. Conclusions: This study shows that the CATBestHealth provided reliably estimated ability scores, with a negligible increase in the number of unreliably estimated patients and ensures that patients having little or no vision-related quality of life problems are minimally burdened with completing items. Translational Relevance: The computer adaptive test EyeQ, set with optimal administration rules, can now be used for the computer adaptive assessment of vision-related quality of life in patients suffering from exudative retinal diseases in ophthalmic clinical practice.

Trends in low vision service utilisation: A retrospective study based on general population healthcare claims.

PURPOSE: To identify parameters associated with the downward trend in the uptake of Low Vision Services (LVS) in the Netherlands. METHODS: A retrospective cohort study was conducted based on a Dutch national health insurance claims database (Vektis CV) of all adults (≥18 years) who received LVS from 2015 until 2018. Descriptive statistics were used to assess socio-demographic, clinical and contextual characteristics and other healthcare utilisation of the study population. General estimating equations trends in characteristics and healthcare utilisation were determined over time. RESULTS: A total of 49,726 unique patients received LVS, but between 2015 and 2018, the number of patients decreased by 15%. The majority was aged 65 years or older (53%), female (54%), had a middle (38%) or low (24%) socio-economic status and lived in urban areas (68%). Between 2015-2018, significant downward trends were found for treatment with intravitreal injections and lens-related diseases for LVS patients. For physical comorbidity, utilisation of ophthalmic care, low vision aids and occupational therapy, a significant upward trend was found over time. CONCLUSION: The decrease of Dutch LVS patients by 15% between 2015 and 2018 might be explained by a reduced distribution of patients treated with intravitreal injections and patients with lens-related diseases within the LVS. Compared to 2015, patients were more likely to have physical comorbidity, to see an ophthalmologist and to use low vision aids and occupational therapy in 2016, 2017 and 2018. This might indicate enhanced access to LVS when treated by ophthalmologists or within other medical specialties, or the opposite, i.e., less access when not treated within one of these medical specialties. Future research is needed to examine differences in patterns between LVS users and non-users further.

Calibration of the Dutch EyeQ to Measure Vision Related Quality of Life in Patients With Exudative Retinal Diseases.

Purpose: This study aims to develop an item-bank to measure vision-related quality of life (Vr-QoL) and subsequently calibrate this set of items. Methods: Three Vr-QoL instruments were searched for suitable items to be added in the EyeQ. Patients who received antivascular endothelial growth factor treatment for various retinal diseases involving macular edema were included in the study and completed the 47-item EyeQ. Item response theory (IRT) was used to calibrate the EyeQ items, which was performed multiple times in subsets as a novel approach, containing 80% of the data. Differential item functioning (DIF) was evaluated for various variables. Results: Responses of 704 patients were used in analysis. One item violated the local independence IRT-assumption and showed a high percentage of missing values, after which this item was deleted from the item-bank. The data of the five subsets fitted the graded response model adequately, and no DIF was detected for items between subsets, after which mean item parameters were calculated. Item fit statistics were found to be good. DIF was detected for gender, age, and administration mode by the patient (independently vs. with help), this involved three items, which all showed negligible impact on total scores. Conclusions: Because of separate calibrations of the EyeQ in multiple subsets, a high robustness of item parameters is expected. Translational Relevance: The calibrated EyeQ can now be used for the assessment of Vr-QoL in patients suffering from exudative retinal diseases and is promising for use as a computer adaptive test.

Predictors of vision-related quality of life in patients with macular oedema receiving intra-vitreal anti-VEGF treatment.

PURPOSE: To determine which demographic and clinical characteristics are predictive of vision-related quality of life (VrQoL) and quality of life (QoL) in patients with macular oedema receiving intravitreal anti-vascular endothelial growth factor (VEGF) treatment. METHODS: Vision-related quality of life (VrQoL) and quality of life (QoL) were measured in 712 patients with retinal exudative disease receiving anti-VEGF treatment at baseline, 6 and 12 months. VrQoL was measured using an item-response theory based 47-question item bank (EyeQ), whereas QoL was measured using the EuroQol Five Dimensions (EQ-5D) questionnaire. The EQ-5D score was dichotomized into a perfect score of 1 and a suboptimal score of <1. Demographic and clinical patient characteristics were considered as possible predictors of (Vr)QoL. Prediction models for (Vr)QoL were created with linear mixed models and generalised estimating equations, using a forward selection procedure. RESULTS: A worse VrQoL was predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, longer length of anti-VEGF treatment at baseline and the presence of non-ocular and ocular comorbidities. Suboptimal EQ-5D scores were predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, the presence of non-ocular comorbidities and a lower educational background. CONCLUSIONS: Along with visual acuity of the better eye, which is the main factor used in clinical decision making, other patient characteristics should also be considered for the risk assessment of (Vr)QoL, such as sex, age, civil status, comorbidities and length of anti-VEGF treatment.

E-nergEYEze, a vision-specific eHealth intervention based on cognitive behavioral therapy and self-management to reduce fatigue in adults with visual impairment: study protocol for a randomized controlled trial.

BACKGROUND: More than half of the adults with visual impairment experience severe symptoms of fatigue, with a negative impact on daily life. Since there is no evidence-based treatment to reduce fatigue in adults with visual impairment, we developed E-nergEYEze, an eHealth intervention based on cognitive behavioral therapy and self-management tailored to the needs of visually impaired adults. The aim is to describe the study protocol of a randomized controlled trial testing E-nergEYEze. METHODS: A randomized controlled trial will be conducted to investigate the cost-effectiveness and cost-utility of E-nergEYEze to reduce fatigue severity compared to care as usual from a healthcare and societal perspective. A total of 172 severely fatigued adults with visual impairment will be recruited and randomized to either the E-nergEYEze intervention plus care as usual or to care as usual only (ratio 1:1). Inclusion criteria are having a visual impairment, experiencing severe fatigue (Checklist Individual Strength - subscale Fatigue Severity: CIS-FS > 35), being 18 years or older, understanding the Dutch language, and having access to the internet. The intervention consists of one face-to-face session and a computer training followed by internet-based modules with information and assignments on coping with fatigue. During this 5-month intervention, participants will be digitally supported by a social worker. All measurements will be administered at baseline, after 6 and 12 months, and additionally, those related to cost-effectiveness at 3 and 9 months. The primary outcome is fatigue severity (CIS-FS). DISCUSSION: Severe fatigue on top of visual impairment compromises quality of life and is associated with incremental societal costs that largely determine the economic burden of low vision or blindness. E-nergEYEze contributes to the evidence base of potentially feasible interventions to reduce the important health-related consequences of vision loss and could fulfill the gap in knowledge, skills and treatment options for low vision services. TRIAL REGISTRATION: Dutch Trial Register NTR7764 . Registered on 28 May 2019.

Reappraisal of the historical myopia epidemic in native Arctic communities.

PURPOSE: This study was developed to explain the extraordinary rise in myopia prevalence beginning after 1950 in Indigenous Arctic communities considering recent findings about the risk factors for school myopia development. Myopia prevalence changed drastically from a historical low of less than 3% to more than 50% in new generations of young adults following the Second World War. At that time, this increase was attributed to concurrent alterations in the environment and way of life which occurred in an aggressive programme of de-culturalization and re-acculturation through residential school programmes that introduced mental, emotional and physical stressors. However, the predominant idea that myopia was genetic in nature won the discussion of the day, and research in the area of environmental changes was dismissed. There may have also been an association between myopia progression and the introduction of extreme mental, emotional and physical stressors at the time. RECENT FINDINGS: Since 1978, animal models of myopia have demonstrated that myopiagenesis has a strong environmental component. Furthermore, multiple studies in human populations have shown since 2005 how myopia could be produced by a combination of limited exposure to the outdoors and heavy emphasis on academic subjects associated with intense reading habits. This new knowledge was applied in the present study to unravel the causes of the historical myopia epidemics in Inuit communities. SUMMARY: After reviewing the available published data on myopia prevalence in circumpolar Inuit populations in the 20th century, the most likely causes for the Inuit myopia epidemic were the combination of increased near work (from almost none to daily reading) and the move from a mostly outdoor to a much more indoor way of life, exacerbated by fewer hours of sunshine during waking hours, the lower illuminance in the Arctic and the extreme psychophysical stress due to the conditions in the Residential Schools.

Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores.

Purpose: The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI. Methods: Parents of children aged 3 to 17 years (n = 500) and children aged 13 to 17 years (n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years (n = 263) and their parents (n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models. Results: Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI. Conclusions: Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.

Experiences with traumatic events, consequences and care among people with visual impairment and post-traumatic stress disorder: a qualitative study from The Netherlands.

OBJECTIVE: Having a visual impairment is known to be associated with an increased vulnerability to (potentially) traumatic events. Little is known about how people with visual impairment experience and process such events. This qualitative study aimed to provide more insight into experiences with traumatic events, consequences of traumatic events and post-traumatic stress disorder (PTSD)-related care among people with visual impairment and PTSD. METHODS: Eighteen persons with visual impairment and (a history of) PTSD were interviewed. Among them were 14 women and 4 men aged between 23 and 66 years. Recruitment of participants was done through health professionals from two low-vision service centres and a patient association for people with eye diseases and visual impairment in The Netherlands. Interviews focused on experiences with (1) traumatic events, (2) consequences of traumatic events and (3) PTSD-related care. Thematic content analysis of interview data was performed using ATLAS.ti. The COnsolidated criteria for REporting Qualitative research (COREQ) checklist was used to check for completeness and transparency of the study. Data were collected between 2018 and 2020. RESULTS: The most commonly reported traumatic events were sexual and physical abuse. Many participants experienced that their impairment had negatively affected their acceptance by others, independence and self-esteem, increasing their vulnerability for traumatic events. Additionally, having a visual impairment negatively impacted participants' ability to respond to situations and aggravated post-traumatic stress reactions. Existing treatments seem suitable for people with visual impairment when accommodated to the impairment. CONCLUSIONS: Having a visual impairment may affect traumatic events and post-traumatic stress reactions, particularly by contributing to low self-esteem, problems in social interactions and a lack of visual information. Insights from this study provide starting points for adapting pretraumatic and post-traumatic care to the needs of people with visual impairment.

Measurement properties of reading tests in subjects with maculopathy.

PURPOSE: A reliable reading test provides a standardized measure of the visual component of reading performance. This study evaluated reproducibility, agreement and feasibility of five Dutch language continuous text reading tests used in clinical practice and research in visually impaired participants. METHODS: In 42 participants with macular pathologies (mean age 77 years), the Colenbrander Reading Card (Colenbrander), International Reading Speed Texts (IReST), Laboratory of Experimental Ophthalmology (LEO) charts, 'de Nederlanders' (NED) and the Radner Reading Charts (Radner) were evaluated. The coefficient of repeatability was calculated for different reading parameters, and agreement between the reading tests was determined. RESULTS: Between the reading tests, the differences found in repeatability for reading performance were mainly within the limit of one line (0.1 logMAR). Exceptions were the inter-session repeatability for critical print size: Colenbrander (0.35 logMAR), LEO (0.34), Radner (0.23). The highest agreement was found between the LEO and Radner; Reading acuity bias 0.03 logMAR (SD 0.10), CPS 0.03 (0.12). CONCLUSION: This study shows that reading performance results obtained with reading tests are not always reliable and reading parameters could not always be properly assessed in participants with maculopathies. Therefore, choices regarding which reading test to use especially for research purposes should be based on both the feasibility and reliability of the reading test. The NED (a historical test) was the least feasible, and it is recommend that this test is no longer used. To allow standardized and comparable analysis of reading performance a highly standardized reading test, like the Radner is recommended.

'Dual Sensory Loss Protocol' for Communication and Wellbeing of Older Adults With Vision and Hearing Impairment - A Randomized Controlled Trial.

OBJECTIVES: Many older adults with visual impairment also have significant hearing loss. The aim was to investigate the effectiveness of a newly developed Dual Sensory Loss (DSL) protocol on communication and wellbeing of older persons with DSL and their communication partners (e.g., spouse or child) in the Netherlands and Belgium. METHODS: Participants (N = 131) and their communication partners (n = 113) were randomized in the "DSL-protocol" intervention group or a waiting-list control group. The intervention took 3 to 5 weeks. Occupational therapists focused on optimal use of hearing aids, home-environment modifications and effective communication strategies. The primary outcome was the Communication Strategies domain of the Communication Profile for the Hearing Impaired (CPHI). Secondary outcomes measured in participants were the Low Vision Quality Of Life Adjustment subscale, the Center for Epidemiological Studies - Depression Scale, De Jong Gierveld Loneliness Scale and the Fatigue Assessment Scale. The Hearing Handicap and Disability Inventory (HHDI) - Reaction of Others subscale and the Care-related Quality of Life - 7 Dimensions was measured in communication partners. Measurements were taken at baseline and 3-month follow-up. Linear mixed models (LMM) were used to analyze effects between groups over time for every outcome measure. RESULTS: Intention-to-treat analyses showed a significant effect of the DSL-protocol on the use of verbal strategies (effect size SMD = 0.60, 95% CI: 0.25 to 0.95) in favor of the control group, however, this effect was non-significant after adjustment for confounding. Effect sizes of other outcomes varied between -0.23 [-0.57, 0.12] and 0.30 [-0.05, 0.64]. The LMM showed a significant effect on the HHDI-Reaction of others scale in favor of communication partners in the treatment group, however, the effect did not remain significant at a 0.01 significance level and the effect size was very small and non-significant 0.12, 95% CI [-0.27 to 0.51]. Adjusted analyses did not reveal treatment effects. CONCLUSION: The DSL-protocol did not clearly contribute to the enhancement of communication and wellbeing in DSL-patients. Possible reasons for the lack of effects are OTs not being comfortable giving advice on communication and psychosocial issues or the short-term treatment and follow-up period. Further study is warranted to find out how the protocol may be adapted or whether it is necessary to involve mental healthcare professionals. CLINICAL TRIAL REGISTRATION: www.ClinicalTrials.gov, identifier NTR2843.

Effect of Corneal Transplantation on Patient-Reported Outcomes and Potential Predictors: A Systematic Review.

PURPOSE: To investigate the effect and potential predictors of corneal transplantation on patient-reported outcomes such as quality of life, visual functioning, and mental health by systematically reviewing the literature. METHODS: Studies with 1 preoperative and at least 1 postoperative measurement were searched for in relevant literature databases. Methodological quality was assessed using the Quality Assessment Tool for Quantitative Studies, and effect sizes were calculated. RESULTS: Of 1445 unique publications, 14 studies, including 15 study designs, were described in 16 publications. Four randomized controlled trials, 1 controlled clinical trial, 1 cohort study, and 1 before-after study (BA) were of good quality; 6 BAs were of moderate quality; and 2 BAs were of weak quality. Patients generally improved 12 months after transplantation on health-related quality of life (effect size between 0.08 and -3.06), vision-related quality of life (-0.67 and -6.65), visual functioning (-0.55 and -0.63), and subjective visual symptoms (-0.31 and -0.86). Patient satisfaction was high (-0.95). Patients improved on depression (-0.31) but remained stable on anxiety (-0.05) 4 months after transplantation. Predictors of positive outcomes were lower preoperative visual acuity and visual functioning, better postoperative visual factors, younger age, and male sex. CONCLUSIONS: Corneal transplantation showed overall beneficial effects on patient-reported outcomes. Knowledge of these effects and predictors might result in better treatment, more patient-centered care, and more realistic expectations on the part of patients and ophthalmologists. Future studies should focus on not only health- and vision-related quality of life but also mental health and labor participation using longitudinal study designs.

Network Analysis of the Participation and Activity Inventory for Children and Youth (PAI-CY) 7-12 Years with Visual Impairment.

Purpose: Children with visual impairment often experience more difficulties regarding participation compared to sighted peers. The Participation and Activity Inventory for Children and Youth (PAI-CY) has recently been developed to assess their participation needs. A novel application in the field of questionnaires is the use of network analysis to explore interrelations between items in order to capture their complex interactions as a reflection of the overall construct of measurement. This study aimed to apply network modeling for the PAI-CY 7-12 from the perspectives of children and their parents. Methods: Children and their parents (n = 195) completed the 55-item PAI-CY via face-to-face interviews and a web-based survey, respectively. Internal consistency, test-retest reliability, and concordance between children and parents were investigated. Two networks were created, along with visualizations of shared and differential connections between children and parents. Results: Eight items were deleted. Network structures were dissimilar; for children, connections evolved around social contacts and school items, whereas for parents, mobility, leisure time, acceptance, self-reliance, and communication items prevailed. In the children's network, playing imaginary games, inviting a friend to play at home, and estimating the distance from others were most connected to other items. Conclusions: This study uniquely identifies connections between items of the PAI-CY 7-12, highlighting the different perspectives parents and children have on what defines participation, possibly implying that they perceive the relevance of various rehabilitation programs differently. Translational Relevance: Rehabilitation programs aimed at improving the most connected items might positively affect other items in the network, possibly improving children's participation.

Cross-cultural validation of the Functional Vision Questionnaire for Children and Young People (FVQ_CYP) with visual impairment in the Dutch population: challenges and opportunities.

BACKGROUND: To assess cross-cultural validity between Dutch and English versions of the FVQ_CYP, a patient-reported outcome measure developed in the United Kingdom (UK) for children and adolescents with (severe) visual impairment or blindness (VI for brevity) to measure functional vision. METHODS: The 36-item FVQ_CYP was translated and adapted into Dutch using standard guidelines. The questionnaire was administered to Dutch children and adolescents aged 7-17 years (N = 253) with impaired vision (no restrictions regarding acuity). Data were compared to existing UK data of children and adolescents aged 10-15 years (N = 91) with VI (acuity LogMar worse than 0.48). As with the original UK FVQ_CYP validation, a rating scale model (RSM) was applied to the Dutch data. RESULTS: Minor adaptations were needed in translation-rounds. Significant differences in item responses were found between the Dutch and UK data. Item response theory assumptions were met, but fit to the RSM was unsatisfactory. Therefore, psychometric properties of the Dutch FVQ_CYP were analysed irrespective of the original model and criteria used. A graded response model led to the removal of 12 items due to missing data, low information, overlapping content and limited relevance to Dutch children. Fit indices for the remaining 24 items were adequate. CONCLUSIONS: Differences in population characteristics, distribution of responses, non-invariance at the model level and small sample sizes challenged the cross-cultural validation process. However, the Dutch adapted FVQ_CYP showed high measurement precision and broad coverage of items measuring children's functional vision. The underlying reasons for differences between countries in instrument performance are discussed with implications for future studies.

The Economic Burden of Visual Impairment and Comorbid Fatigue: A Cost-of-Illness Study (From a Societal Perspective).

Purpose: To investigate the burden of visual impairment and comorbid fatigue in terms of impact on daily life, by estimating societal costs (direct medical costs and indirect non-health care costs) accrued by these conditions. Methods: This cost-of-illness study was performed from a societal perspective. Cross-sectional data of visually impaired adults and normally sighted adults were collected through structured telephone interviews and online surveys, respectively. Primary outcomes were fatigue severity (FAS), impact of fatigue on daily life (MFIS), and total societal costs. Cost differences between participants with and without vision loss, and between participants with and without fatigue, were examined by (adjusted) multivariate regression analyses, including bootstrapped confidence intervals. Results: Severe fatigue (FAS ≥ 22) and high fatigue impact (MFIS ≥ 38) was present in 57% and 40% of participants with vision loss (n = 247), respectively, compared to 22% (adjusted odds ratio [OR] 4.6; 95% confidence interval [CI] [2.7, 7.6]) and 11% (adjusted OR 4.8; 95% CI [2.7, 8.7]) in those with normal sight (n = 233). A significant interaction was found between visual impairment and high fatigue impact for total societal costs (€449; 95% CI [33, 1017]). High fatigue impact was associated with significantly increased societal costs for participants with visual impairment (mean difference €461; 95% CI [126, 797]), but this effect was not observed for participants with normal sight (€12; 95% CI [-527, 550]). Conclusions: Visual impairment is associated with an increased prevalence of high fatigue impact that largely determines the economic burden of visual impairment. The substantial costs of visual impairment and comorbid fatigue emphasize the need for patient-centered interventions aimed at decreasing its impact.