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Srijana Adhikari,1 Ruth Marie Antoinette van Nispen,2 Ellen Bernadette Maria Elsman,2 Fleur van Rens,3 Ger van Rens2 1Department of Pediatric Ophthalmology and Strabismus, Tilganga Institute of Ophthalmology, Kathmandu, Nepal; 2Department of Ophthalmology, VU University Medical Centre and the Amsterdam Public Health Research Institute, Amsterdam, the Netherlands; 3Discipline of Exercise Science, Murdoch University, Murdoch, WA, AustraliaCorrespondence: Srijana Adhikari, Tilganga Institute of Ophthalmology, Gaushala, PO Box 561, Kathmandu, Nepal, Tel +977-9849287387, Email srij_a@yahoo.comPurpose: To study the causes of moderate and severe visual impairment (VI) and blindness and its changing trends in Nepalese children.Patients and Methods: A cross-sectional descriptive study was conducted. Participants, aged 7 to 17 years were recruited from integrated schools for the blind and the outpatient department of a tertiary eye hospital in Kathmandu. VI and blindness were categorized according to World Health Organization (WHO) categories and its protocol for eye examination of children with blindness and VI was followed. Findings were compared to former studies from Nepal.Results: A total of 200 children were included, of whom 45% had moderate VI, 5% had severe VI, and 50% were blind. Mean age of children with VI and blindness was 11.1 (SD = 3.3) and 12.9 (SD = 3) years, respectively. Forty percent of children with VI and 38% of blind children were female. In our study, retina (39%) and whole globe (32%) were the most common anatomical site of involvement in children with VI and blindness, respectively, while cornea was the most common anatomical site of involvement in former studies. Heredity (43%) was the most common etiological factor although in 24.5% of all children, etiology was unknown. In 43.5% of children, blindness and VI was due to avoidable causes.Conclusion: In relatively many children, the etiology of VI and blindness could be either prevented or treated. Compared to former studies from Nepal, there is a changing trend in the etiology of severe VI and blindness.Keywords: childhood blindness, Nepal, visual impairment, pediatric

Raba Thapa,1 Shankar Khanal,2 Hendra Stevie Tan,3 Suman Shumsher Thapa,1 Gerardus Hermanus Maria Bartholomeus van Rens3 1Tilganga Institute of Ophthalmology, Kathmandu, Nepal; 2Central Department of Statistics, Tribhuvan University, Kirtipur, Nepal; 3Department of Ophthalmology, Amsterdam University Medical Center, Vrije University Amsterdam, Amsterdam, the NetherlandsCorrespondence: Raba ThapaTilganga Institute of Ophthalmology, Bagmati Bridge, Kathmandu, NepalTel +977-1-4493775Fax +977-1-4474937Email rabathapa@live.comIntroduction: Retinal diseases are an emerging cause of visual impairment in the developing world. The aim of this study was to explore the prevalence, pattern, and risk factors of retinal diseases in Nepal.Methods: This is a population-based, cross-sectional study conducted from 2013 to 2015. The sample size was 2100 subjects age 60 years and above from 30 clusters of Bhaktapur district, Nepal. Detailed history, visual acuity, and anterior and posterior segment examinations were performed. Blood sugar and blood pressure were measured.Results: Complete information was available for 1860 (88.57%) subjects. Mean age was 69.64± 7.31 years, ranging from 60 to 95 years. The prevalence of any retinal disorder was 52.37% (95% confidence interval (CI): 50.07– 54.66%). The prevalence of retinal disorders increased with ageing: 51.26% between 60 and 69 years and 53.05% among those age 80 years and above. Age-related macular degeneration (AMD) was the most common retinal disease (35.43%), followed by hypertensive retinopathy (4.35%), epiretinal membrane (ERM) (3.66%), branch retinal vein occlusion (BRVO) (2.90%), and diabetic retinopathy (DR) (2.15%). Other rare retinal disorders included myopic fundus (0.86%), chorioretinal scar (0.54%), retinal holes (0.32%), retinitis pigmentosa (0.32%), retinal detachment (0.16%), and coloboma (0.11%). In multivariate logistic regression analysis, those with prior cataract surgery (odds ratio (OR), 1.71; 95% CI: 1.32– 2.22, p < 0.001) and systemic hypertension (OR, 1.21; 95% CI: 1.001– 1.47, p = 0.049) had significantly increased retinal disorders.Conclusion: Prevalence of retinal disorder was 52.37% at age 60 years and above. AMD, hypertensive retinopathy, ERM, BRVO, and DR were the most common retinal disorders. Retinal disorders increased with ageing. Retinal disorders were found associated with hypertension and prior cataract surgery. Timely screening, control of blood sugar and high blood pressure, and regular eye check-ups could help to save vision from retinal diseases.Keywords: retinal diseases, age-related macular degeneration, hypertensive retinopathy, diabetic retinopathy, retinal vein occlusion, epiretinal membrane

Raba Thapa,1 Shankha N Twyana,2 Govinda Paudyal,1 Shankar Khanal,3 Ruth van Nispen,4 Stevie Tan,4 Suman S Thapa,5 GHMB van Rens4 1Vitreo-retina Department, Tilganga Institute of Ophthalmology, Kathmandu, Nepal; 2Department of Eye Bank, Tilganga Institute of Ophthalmology, Kathmandu, Nepal; 3Central Department of Statistics, Tribhuvan University, Kirtipur, Nepal; 4Department of Ophthalmology and the Amsterdam Public Health Research Institute, Vrije University Medical Center, Amsterdam, the Netherlands; 5Glaucoma Department, Tilganga Institute of Ophthalmology, Kathmandu, Nepal Aim: Diabetic retinopathy (DR) is an emerging cause of blindness in developing countries. This study aimed to explore the prevalence and risk factors of DR in an elderly population in Nepal.Subjects and methods: This is a population-based, cross-sectional study. A total of 1860 subjects at the age 60 years and above participated (response rate 88.6%). A detailed history was obtained, presenting and best-corrected visual acuity were measured, and anterior segment and posterior segment examinations were carried out. Blood pressure and random blood sugar were recorded; body mass index was calculated, and abdominal girth was measured. DR was graded by clinical examination using Early Treatment Diabetic Retinopathy Study criteria.Results: Diabetes was found in 168 (9%) subjects (mean age 69.6 years), 31 (18.5%) of whom were newly diagnosed. The prevalence of DR was 23.8% (95% confidence interval [CI]: 17.7%–31%) among the persons with diabetes. The prevalence of DR among newly diagnosed subjects with diabetes was 6.5% (95% CI: 0.8%–21.4%). The prevalence of vision-threatening DR was 9.5% (95% CI: 5.5%–15%) and was higher in males. The prevalence of DR was 83.3% (95% CI: 35.9%–99.6%) among those with diabetes for over 20 years. In multivariable logistic regression analysis, duration of diabetes, hypertension, and alcohol consumption were significantly associated with DR.Conclusion: DR is a common problem among the elderly population with diabetes in Nepal. The duration of diabetes, hypertension, and alcohol consumption are the risk factors for the development of DR. Strategies have to be developed for timely diagnosis of diabetes and screening for DR. Keywords: prevalence, elderly, risk factors, diabetic retinopathy, Nepal

Raba Thapa,1 Sanyam Bajimaya,1 Govinda Paudyal,1 Shankar Khanal,2 Stevie Tan,3 Suman S Thapa,1 Ger van Rens3 1Vitreo-retina Service, Tilganga Institute of Ophthalmology, Kathmandu, 2Central Departments of Statistics, Tribhuvan University, Kirtipur, Nepal; 3Department of Ophthalmology, Vrije University Medical Center, Amsterdam, the Netherlands Aim: This study aimed to explore the prevalence of and risk factors for age-related macular degeneration (AMD) in an elderly population in Nepal. Subjects and methods: This is a population-based, cross-sectional study. A sample size of 2,100 was calculated. A total of 1,860 (88.6%) subjects aged >60 years were enrolled for the study from 30 clusters in the district. Detailed history, visual acuity, and anterior segment and posterior segment examinations were performed. AMD was graded according to the International ARM Epidemiological Study Group. Results: Among the total study population, 659 subjects had any AMD (35.43%; 95% confidence interval [CI]: 33.25–37.65), 484 had mild dry AMD (26.02%; 95% CI: 24.04–28.08), 143 had intermediate dry AMD (7.69%; 95% CI: 6.52–8.99), 19 had geographic atrophy (1.02%; 95% CI: 0.61–1.59), and 13 had wet AMD (0.70%; 95% CI: 0.37–1.19). The overall prevalence of early and late AMD was 33.71% and 1.72%, respectively. Among subjects with dry and wet AMD, 36.53% and 46.1% had visual impairment, while 2.78% and 23.08% were blind, respectively. In multivariate analysis, AMD was significantly higher in subjects with an increased number of cigarettes smoked per day (odds ratio [OR] 1.02, 95% CI: 1.01–1.04; P=0.007) and in subjects with pseudophakia (OR 1.45, 95% CI: 1.12–1.87; P=0.005). Conclusion: One-third of the population aged ≥60 years have some form of AMD. There was a significant association with the number of cigarettes consumed and with previous cataract surgery. Keywords: age-related macular degeneration, prevalence, risk factors, Nepal

Abstract Background A substantial minority of individuals who initially apply for genetic counselling for breast/ovarian cancer withdraw at an early stage from the counselling process. This study investigated the self-reported reasons for early withdrawal and the factors associated significantly with such withdrawal. Methods Self-report questionnaires were mailed to 83 women who had applied for genetic counselling for breast/ovarian cancer but who subsequently withdrew from the counselling process (the "withdrawers"). A comparison group of 105 women who had completed the genetic counselling (the "attendees") received a similar questionnaire. The questionnaire assessed sociodemographic characteristics, reasons for applying for genetic counselling, general distress (MHI-5), cancer-specific distress (IES), and cancer worries. For those women who discontinued the counselling, reasons for withdrawal were also assessed. Results The primary reasons given for withdrawing from counselling were difficulties in anticipating the consequences of genetic counselling (28%), and worries about being unable to adequately cope with an unfavourable test result (20%). Compared to the attendees, the withdrawers were significantly younger, more frequently asymptomatic, more often the first and only member of the family to apply for counselling, and less worried about cancer. Current levels of cancer-specific distress and general distress were comparable between the two groups. Conclusion Younger women, those without a history of cancer, and those who are first in their family to apply are more likely to withdraw prematurely from genetic counselling for breast/ovarian cancer. These withdrawers have no elevated levels of distress. However, a substantial percentage of individuals discontinue counselling due to concerns about their (in)ability to cope with a possible unfavourable test outcome. This suggests that greater attention should be paid to ways of coping with test results during the very first contact with the clinic.

Abstract Background This systematic review gives an overview of foveal crowding (the inability to recognize objects due to surrounding nearby contours in foveal vision) and possible interventions. Foveal crowding can have a major effect on reading rate and deciphering small pieces of information from busy visual scenes. Three specific groups experience more foveal crowding than adults with normal vision (NV): 1) children with NV, 2) visually impaired (VI) children and adults and 3) children with cerebral visual impairment (CVI). The extent and magnitude of foveal crowding as well as interventions aimed at reducing crowding were investigated in this review. The twofold goal of this review is : [A] to compare foveal crowding in children with NV, VI children and adults and CVI children and [B] to compare interventions to reduce crowding. Methods Three electronic databases were used to conduct the literature search: PubMed, PsycINFO (Ovid), and Cochrane. Additional studies were identified by contacting experts. Search terms included visual perception, contour interaction, crowding, crowded, and contour interactions. Results Children with normal vision show an extent of contour interaction over an area 1.5–3× as large as that seen in adults NV. The magnitude of contour interaction normally ranges between 1–2 lines on an acuity chart and this magnitude is even larger when stimuli are arranged in a circular configuration. Adults with congenital nystagmus (CN) show interaction areas that are 2× larger than those seen adults with NV. The magnitude of the crowding effect is also 2× as large in individuals with CN as in individuals with NV. Finally, children with CVI experience a magnitude of the crowding effect that is 3× the size of that experienced by adults with NV. Conclusions The methodological heterogeneity, the diversity in paradigms used to measure crowding, made it impossible to conduct a meta-analysis. This is the first systematic review to compare crowding ratios and it shows that charts with 50% interoptotype spacing were most sensitive to capture crowding effects. The groups that showed the largest crowding effects were individuals with CN, VI adults with central scotomas and children with CVI. Perceptual Learning seems to be a promising technique to reduce excessive foveal crowding effects.

Abstract Background Orientation and mobility (O&M) training in using an identification (ID) cane is provided to partially-sighted older adults to facilitate independent functioning and participation in the community. Recently, a protocolised standardised O&M-training in the use of the ID cane was developed in The Netherlands. The purpose of this study is to assess the usefulness and acceptability of both the standardised training and the regular training for participants and O&M-trainers in a randomised controlled trial (NCT00946062). Methods The standardised O&M-training consists of two structured face-to-face sessions and one telephone follow-up, in which, in addition to the regular training, self-management and behavioural change techniques are applied. Questionnaires and interviews were used to collect data on the training’s usefulness, e.g. the population reached, self-reported benefits or achievements, and acceptability, e.g. the performance of the intervention according to protocol and participants’ exposure to and engagement in the training. Results Data was collected from 29 O&M-trainers and 68 participants. Regarding the self-reported benefits, outcomes were comparable for the standardised training and the regular training according the trainers and participants e.g., about 85% of the participants in both groups experienced benefits of the cane and about 70% gained confidence in their capabilities. Participants were actively involved in the standardised training. Nearly 40% of the participants in the standardised training group was not exposed to the training according to protocol regarding the number of sessions scheduled and several intervention elements, such as action planning and contracting. Conclusions The standardised and regular O&M-training showed to be useful and mostly acceptable for the partially-sighted older adults and trainers. Yet, a concern is the deviation from the protocol of the standardised O&M-training by the O&M-trainers regarding distinguishing elements such as action planning. Overall, participants appreciated both trainings and reported benefit.

Abstract Background For the Low Vision Quality Of Life questionnaire (LVQOL) it is unknown whether the psychometric properties are satisfactory when an item response theory (IRT) perspective is considered. This study evaluates some essential psychometric properties of the LVQOL questionnaire in an IRT model, and investigates differential item functioning (DIF). Methods Cross-sectional data were used from an observational study among visually-impaired patients (n = 296). Calibration was performed for every dimension of the LVQOL in the graded response model. Item goodness-of-fit was assessed with the S-X2-test. DIF was assessed on relevant background variables (i.e. age, gender, visual acuity, eye condition, rehabilitation type and administration type) with likelihood-ratio tests for DIF. The magnitude of DIF was interpreted by assessing the largest difference in expected scores between subgroups. Measurement precision was assessed by presenting test information curves; reliability with the index of subject separation. Results All items of the LVQOL dimensions fitted the model. There was significant DIF on several items. For two items the maximum difference between expected scores exceeded one point, and DIF was found on multiple relevant background variables. Item 1 'Vision in general' from the "Adjustment" dimension and item 24 'Using tools' from the "Reading and fine work" dimension were removed. Test information was highest for the "Reading and fine work" dimension. Indices for subject separation ranged from 0.83 to 0.94. Conclusions The items of the LVQOL showed satisfactory item fit to the graded response model; however, two items were removed because of DIF. The adapted LVQOL with 21 items is DIF-free and therefore seems highly appropriate for use in heterogeneous populations of visually impaired patients.

Abstract Background Demographic ageing will lead to increasing pressure on visual rehabilitation services, which need to be efficiently organised in the near future. The Dutch ICF Activity Inventory (D-AI) was developed to assess the rehabilitation needs of visually impaired persons. This pilot study tests the feasibility of the D-AI using a computer-assisted telephone interview. Methods In addition to the regular intake, the first version of the D-AI was assessed in 20 patients. Subsequently, patients and intake assessors were asked to fill in an evaluation form. Based on these evaluations, a new version of the D-AI was developed. Results Mean administration time of the D-AI was 88.8 (± 41.0) minutes. Overall, patients and assessors were positive about the D-AI assessment. However, professionals and 60% of the patients found the administration time to be too long. All included items were considered relevant and only minor adjustments were recommended. Conclusion The systematic character of the revised D-AI will prevent topics from being overlooked and indicate which needs have the highest priority from a patient-centred perspective. Moreover, ongoing assessment of the D-AI will enhance evaluation of the rehabilitation process. To decrease administration time, in the revised D-AI only the top priority goals will be fully assessed. Using the D-AI, a rehabilitation plan based on individual needs can be developed for each patient. Moreover, it enables better evaluation of the effects of rehabilitation. A larger validation study is planned.

Abstract Background Reading problems are frequently reported by visually impaired persons. A closed-circuit television (CCTV) can be helpful to maintain reading ability, however, it is difficult to learn how to use this device. In the Netherlands, an evidence-based rehabilitation program in the use of CCTVs was lacking. Therefore, a standard training protocol needed to be developed and tested in a randomized controlled trial (RCT) to provide an evidence-based training program in the use of this device. Methods/Design To develop a standard training program, information was collected by studying literature, observing training in the use of CCTVs, discussing the content of the training program with professionals and organizing focus and discussion groups. The effectiveness of the program was evaluated in an RCT, to obtain an evidence-based training program. Dutch patients (n = 122) were randomized into a treatment group: normal instructions from the supplier combined with training in the use of CCTVs, or into a control group: instructions from the supplier only. The effect of the training program was evaluated in terms of: change in reading ability (reading speed and reading comprehension), patients' skills to operate the CCTV, perceived (vision-related) quality of life and tasks performed in daily living. Discussion The development of the CCTV training protocol and the design of the RCT in the present study may serve as an example to obtain an evidence-based training program. The training program was adjusted to the needs and learning abilities of individual patients, however, for scientific reasons it might have been preferable to standardize the protocol further, in order to gain more comparable results. Trial registration http://www.trialregister.nl, identifier: NTR1031

Abstract 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

Abstract Background Co-morbidity is a common phenomenon in the elderly and is considered to be a major threat to quality of life (QOL). Knowledge of co-existing conditions or patient characteristics that lead to an increased QOL decline is important for individual care, and for public health purposes. In visually impaired older adults, it remains unclear which co-existing conditions or other characteristics influence their health-related QOL. Our aim was to present a risk profile of characteristics and conditions which predict deterioration of QOL in visually impaired older patients. Methods Analyses were performed on data from an observational study among 296 visually impaired older patients from four Dutch hospitals. QOL was measured with the EuroQol-5D (EQ-5D) at baseline and at five-month follow-up. Nine co-existing condition categories (musculoskeletal; diabetes; heart; hypertension; chronic obstructive pulmonary disease (COPD) or asthma; hearing impairment; stroke; cancer; gastrointestinal conditions) and six patient characteristics (age; gender; visual acuity; social status; independent living; rehabilitation type) were tested in a linear regression model to determine the risk profile. The model was corrected for baseline EQ-5D scores. In addition, baseline EQ-5D scores were compared with reference scores from a younger visually impaired population and from elderly in the general population. Results From the 296 patients, 50 (16.9%) were lost to follow-up. Patients who reported diabetes, COPD or asthma, consequences of stroke, musculoskeletal conditions, cancer, gastrointestinal conditions or higher logMAR Visual Acuity values, experienced a lower QOL. After five months, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a decline in QOL (R2 = 0.20). At baseline, the visually impaired older patients more often reported moderate or severe problems on most EQ-5D dimensions than the two reference groups. Conclusion In visually impaired older patients, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a relatively rapid decline in health-related QOL. With this risk profile, a specific referral by the ophthalmologist to another sub-specialty may have a beneficial effect on the patient's health-related QOL. A referral by the ophthalmologist or optometrist to a multidisciplinary rehabilitation service seems appropriate for some patients with co-morbidity. The current results need to be confirmed in studies using pre-structured questionnaires to assess co-morbidity.

This article reports on a study on the implementation of an evidence-based guideline for the referral for rehabilitation of adults who are visually impaired in the Netherlands. The purpose of the study was to find out if there are potential barriers to the implementation of the Nederlands Oogheelkundig Gezelschap (NOG) (2004) evidence-based guideline on referral. It was conducted during the annual conference of the NOG in Maastricht, the Netherlands, in March 2005, with thirteen ophthalmologists participating. They were interviewed regarding their views on the potential barriers to implementing the new guideline. All the participants were aware of the guideline, and were familiar with at least its global content. The general attitude toward the guideline was positive. However, not all recommendations were followed. Three potential barriers were found: an external barrier (time) with regard to the recommendation about the delivery of bad news, the lack of agreement with the recommendation on Charles Bonnet syndrome, and the lack of motivation to change the referral process by not perceiving a problem with it. (Contains 1 box and 1 table.)

Most of the studies of the causes of visual impairment have been population-based studies. These population-based studies provide important information on the incidence and prevalence of "theoretical" eye problems in a community. However, not all those who are visually impaired, from a theoretical point of view, consider themselves as such and hence will not visit an ophthalmologist or accept the offer of low vision counseling. Others are unaware of the possibilities of rehabilitation or are not able to come to these clinics because of health problems, mental difficulties, or other reasons (Munoz et al., 1999). This discrepancy between population-based studies and daily practice makes it difficult to develop strategies to offer low vision services to those who need them. In addition, little is known about the changes in patterns of visual impairment over time. Therefore, there is still a place for hospital-based or patient-based studies of the incidence and etiology of visual impairment. The aim of this study was to determine changes, over time, in the incidence and etiology of visual impairment in persons aged 50 and older who visited an eye clinic for an incurable age-related eye disease and who accepted an offer of rehabilitation. The participants were all the patients of the Department of Ophthalmology of the Elkerliek Hospital, Helmond, the Netherlands.