Making science accessible for blind and low-vision people, and those with diverse needs.

The May-June 2024 issue of Immunology & Cell Biology contains an Immunology Futures Special Feature on Disability Inclusion in Science. Diverse groups do better in science, yet individuals with disabilities face barriers to accessing education and opportunities within scientific disciplines. The Monash Sensory Science program, led by Professor Jamie Rossjohn and legally blind artist in residence Dr Erica Tandori, has transformed the accessibility for those with blindness, low vision and diverse needs (BLVDN) to experience biomedical data visualization through the form of multisensory scientific communication. The Monash Sensory Science Exhibition, first hosted in 2018 with the support of Monash University and the Australian Research Council, utilizes tactile multisensory and multimodal artworks, interactive displays and multisensory science books for BLVDN participants. In this Special Feature, scientists and researchers involved in the 2023 Autoimmunity Monash Sensory Science Exhibition discuss the novel models and displays designed to improve the scientific understanding of complex autoimmune diseases including rheumatoid arthritis, lupus, celiac disease, psoriasis and type 1 diabetes. This Special Feature aims to inform the inclusive teaching of immunology and raise discussions of how to improve access to all within our scientific institutions.

The Effect of Varied Microperimetric Biofeedback Training in Central Vision Loss: A Randomized Trial.

SIGNIFICANCE: This investigation reports for the first time the effects of different microperimetric biofeedback strategies in visually impaired subjects with central field loss. PURPOSE: This study aimed to evaluate the effects of two MP-3 microperimeter biofeedback strategies on the visual performance of subjects with central vision loss. Moreover, changes between the groups were compared to provide indications of practice with biofeedback stimulation in subjects with central vision loss. METHODS: Using simple randomization, 19 participants were trained according to two different biofeedback stimulation approaches using the MP-3 microperimeter. Patients were assigned to two different groups: subjects trained for 2 days a week (group A) and 3 days a week (group B). The patients in each group were randomized to perform a total of 10 or 15 sessions. RESULTS: Fixation stability increased from 4.5 ± 2.8 to 2.3 ± 2.2° 2 and from 8.2 ± 6.9 to 1.4 ± 1° 2 after 2 and 3 weekly biofeedback training sessions, respectively ( P < .05). Biofeedback training induced a significant improvement of 40.7 and 29.4% in reading speed for groups A and B, respectively ( P < .05). A comparison of two weekly biofeedback training sessions with three weekly biofeedback sessions demonstrated greater fixation stability in group B ( P < .05). CONCLUSIONS: This study concludes that a biofeedback intervention is effective in enhancing oculomotor control in patients with central vision loss. In our study, a more intensive biofeedback strategy seemed to produce significantly better results in terms of functional vision parameters.

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.

Digital Reading with Low Vision: Principles for Selecting Display Size.

SIGNIFICANCE: Digital reading devices have become increasingly popular among people with low vision. Because displays come in many sizes ranging from smart watches to large desktop computer displays, it is important to have principles to guide people with low vision in selecting suitable displays for reading. PURPOSE: The selection of effective digital displays for reading by people with low vision focuses attention on the interacting effects of print size, display size, font, visual acuity, and reading distance. This technical report aims to provide principles for identifying the minimum size of digital displays required for fluent reading by people with low vision. METHODS: We emphasize two critical factors in selecting an appropriate reading display: angular print size, which should exceed the individual's critical print size, and display size, which should allow at least 13 characters to be presented on each line. Our approach considers a low-vision individual's acuity and preferences for viewing distance and fonts. RESULTS: Through an illustrative example, we demonstrate how our approach can be used to determine display size for a low-vision individual with 20/200 acuity and central field loss who wants to read at 30-cm viewing distance with the Times Roman font. We have developed a web application based on our recommended approach to provide easy access to our algorithm. CONCLUSIONS: We provide a procedure to guide the selection of appropriate displays for a wide range of acuities. Our approach can help clinicians in making recommendations for their patients, digital product designers in developing more accessible devices, and low-vision individuals in selecting digital displays for reading.

Improving health-related quality of life in glaucoma during 11 years and its association with vision loss and treatment of the disease.

PURPOSE: To evaluate the impact of glaucoma on health-related quality of life (HRQoL) and mental health in the ageing population of Finland. METHODS: Altogether 7380 and 5774 Finnish individuals aged 30 years and older with known eye disease status were studied in 2000 and 2011, respectively, in two population-based surveys, including an 11-year follow-up of 4683 participants. Data on HRQoL (EQ-5D-3L, 15D), depression (BDI), psychological distress (GHQ-12) and eye disease diagnoses were obtained from self-reported assessments. Information on glaucoma was complemented with the medication, diagnosis and eye surgery data obtained from the Finnish Health Registries. Distance visual acuity was assessed using the Snellen eye chart test. In logistic regression analyses, data were corrected for age, gender and the most common comorbidities. RESULTS: Glaucoma patients with verified diagnosis (n = 192 in 2000, n = 202 in 2011) and individuals with self-suspected glaucoma (n = 100 in 2000, n = 41 in 2011) showed a significant decrease in their HRQoL. Glaucoma was also associated with worsened overall mental health based on BDI and GHQ-12 results. Visual impairment associated with glaucoma is the major determinant of the reduced HRQoL and mental health. Neither glaucoma medication nor glaucoma surgery affected these parameters. The impact of glaucoma on HRQoL and mental health diminished between 2000 and 2011 in a cross-sectional setting. The newly diagnosed glaucoma during the 11-year follow-up had a minimal effect on them. CONCLUSION: Glaucoma patients show reduced HRQoL and mental health, which is associated with vision loss regardless of the awareness or treatment of the disease. However, this effect seems to be diminishing over time, and the newly diagnosed glaucoma did not show a significant effect on either HRQoL or mental health.

Developing consensus-based referral criteria for low vision services in Australia.

PURPOSE: To develop expert consensus on referral criteria for low vision services in Australia. METHODS: In a modified online Delphi process, a panel of 38 Australian experts in low vision (including ophthalmologists, optometrists, orthoptists, occupational therapists, orientation and mobility professionals, researchers and managers) participated in three rounds of consensus building over a period of 5 months commencing in 2019. Initially, 90 statements were developed, addressing what should be included in best-practice low vision referral criteria, currently used criteria, timing of referral and responsibility for referral. By the third round, these had been reduced and refined to a total of four statements. RESULTS: In three Delphi rounds, the expert panel produced three key recommendations for low vision referral: (1) that low vision referral should be based mainly on the impact of uncorrectable vision impairment on function and well-being; (2) clinical measures of visual acuity and visual field might be a secondary consideration and (3) it is important to fully inform a person about low vision services at an early stage of vision loss and to involve them in decision making about referral. There was consensus on the need for clear referral pathways and that both ophthalmologists and optometrists have primary responsibility to refer for low vision services. CONCLUSIONS: Although recommendations and guidelines should not replace sound individual clinical judgement, promotion and adoption of these consensus recommendations could assist health care professionals in providing appropriate and timely referral for low vision services to the benefit of people with vision impairment.

Population-based assessment of prevalence of spectacle use and effective spectacle coverage for distance vision in Andhra Pradesh, India - Akividu Visual Impairment Study.

CLINICAL RELEVANCE: Effective spectacle coverage is a useful indicator to assess the coverage of refraction services in a given region. We found a low coverage in the Akividu region suggesting a need to develop effective refraction services. BACKGROUND: To assess the prevalence of spectacle use and effective spectacle coverage for distance vision among people aged 40 years and older in the Indian state of Andhra Pradesh. METHODS: A population-based cross-sectional survey was carried out in the Akividu region in West Godavari and Krishna districts. The study teams visited selected households and conducted eye examinations in the selected clusters. A structured questionnaire was used to collect information on spectacle use. 'Met Need' was defined as unaided VA worse than 6/12 but improved to 6/12 or better with their current spectacles. 'Unmet Need' was defined as unaided VA worse than 6/12 but improved to 6/12 with pinhole, among those not using spectacles. The 'Under-met Need' was defined as aided VA worse than 6/12 but improving with pinhole to 6/12 or better. Based on these definitions, Effective Refractive Error Coverage (e-REC) is calculated as: e-REC (%) s = ((met need)/(met need + under-met need + unmet need)) X100. RESULTS: Of 3,000 enumerated from 60 clusters, 2,587 (86.2%) participants were examined. The prevalence of current spectacle use was 43.1% (95% CI:41.2-45.0). The e-REC was 37.4%. It was also lower in men compared to women and among those without any education. Participants who had cataract surgery in either eye had similar e-REC compared to those who were not operated. CONCLUSION: Though spectacle use was found to be high, there is a still large unmet need for refractive correction for distance. Effective service delivery models to provide refraction and spectacle dispensing services are needed to achieve universal eye health coverage in the region.

Assessment of Low Vision Referrals before and after Establishment of a Low Vision Program at an Academic Medical Center.

SIGNIFICANCE: We assessed the number of referrals for low vision (LV) services to determine if establishing an LV program at a large academic medical center impacted referral rates. Visual acuity (VA), referral outcome, location, and specialty were examined as factors that could impact referrals. PURPOSE: This study aimed to identify gaps in the referral process to LV services. METHODS: Electronic medical records of patients were reviewed to ascertain the referral rate among those who qualified for services, both before (2014 to 2016) and after (2017 to 2019) the establishment of an LV program. The medical records were further subdivided into two categories based on VA in the better-seeing eye: 20/70 to 20/200 and 20/200 to worse vision. RESULTS: A total of 2014 patient records with VA qualifying for LV services were reviewed. The proportion of patients who had a VA of 20/70 to 20/200 inclusive in their better eye was 91.7%. A majority (89.8%) of patients with VA of 20/70 to 20/200 and 74.4% of patients with VA worse than 20/200 were never referred. Before establishing an LV program, only 2.2% of patients with VA of 20/70 to 20/200 were referred for services on their first visit, which improved to 8% after the program was established (odds ratio [OR], 3.88; 95% confidence interval [CI], 2.37 to 6.33; P < .001). Also, before the program's establishment, 12.5% of patients with VA worse than 20/200 were referred on their first visit, which increased to 31.9% after the program's establishment (OR, 3.29; 95% CI, 1.50 to 7.19; P = .002). Patients with VA worse than 20/200 were more likely to be referred (before: OR, 6.34 [95% CI, 3.03 to 13.28; P < .001]; after: OR, 5.38 [95% CI, 3.09 to 9.37; P < .001]). Our data also showed that 10.3% of patients in this study declined referral to LV services. CONCLUSIONS: Referral rates to LV services are low among patients who qualify. The establishment of an LV program at the medical center significantly increased referral rates. However, more improvement is necessary to connect patients to LV services.

Age-Related Macular Degeneration.

Age-related macular degeneration (AMD) is a leading cause of blindness. The main risk factor is advancing age, with the severity of vision loss ranging from mild to severe. There is a 25% risk of early AMD and 8% risk of late AMD in patients over the age of 75, with the number of cases expected to increase because of the aging population. Diagnosis of the disease requires a dilated fundus examination. Physicians should be aware of the symptoms, risk factors, and treatment options for AMD to refer appropriately for ophthalmologic evaluation. Early detection can be helpful to prevent disease progression.

Improved Visual Function in a Case of Ultra-low Vision following Ischemic Encephalopathy Using Transcranial Electrical Stimulation; A Brief Report.

OBJECTIVES: Cerebral visual impairment is amongst the key pathological causes of pediatric visual abnormalities often resulted from hypoxic-ischemic brain injury. Such an injury results in profound visual impairments which severely impairs patients' quality of life. Given the nature of the pathology, treatments are currently limited to rehabilitation strategies such as transcranial electrical stimulation and visual rehabilitation therapy. CASE DESCRIPTION: Here, we discussed an 11-year-old girl with cerebral visual impairment who underwent concurrent visual rehabilitation therapy, transcranial electrical stimulation, and pharmacological therapy resulting in her improved visual function. CONCLUSION: Given its beneficial effects, transcranial electrical stimulation may be sought as a potential add-on modality when strategizing visual rehabilitation therapy.

Low-Intensity Laser Light Projection for Improved Reading Abilities in Low-Vision Patients.

PURPOSE: To evaluate the efficacy of a new laser imaging device that projects images onto functioning macular areas, to improve visual acuity (VA) in low-vision patients with macular diseases. METHODS: An interventional case series of consecutive patients with low vision in their right eyes (RE). RE VA was measured by showing the patients digits of various standard sizes and measuring their best-corrected VA (BCVA). Then, using the I.C.INSIDE device to project the same standard digits onto functioning macular areas. Patient's ability to recognize the digits with the I.C.INSIDE device was correlated with patient's performance using telescopic low-vision aids. The main outcome measure was change in VA with the different visual aids. RESULTS: Eleven patients (6 males and 5 females) with an average age of 75 ± 6.7 years and low vision in their RE due to macular diseases were included in the study. Baseline BCVA was 1.554 ± 0.50 logMAR. Low-vision aids improved mean VA in 10 patients to 0.64 ± 0.40 logMAR (p < .0001), further improvement was noticed in 8 patients to 0.35 ± 0.16 logMAR (p < .0001) using the laser device, but, three patients did not recognize any digit using the laser device. CONCLUSIONS: The I.C.INSIDE device significantly improved baseline VA in low-vision patients with macular diseases, using extra-foveal fixation.

Randomized Controlled Trial of a Spectacle Lens for Macular Degeneration.

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

2017 Charles F. Prentice Award Lecture: Peripheral Prisms for Visual Field Expansion: A Translational Journey.

On the occasion of being awarded the Prentice Medal, I was asked to summarize my translational journey. Here I describe the process of becoming a low-vision rehabilitation clinician and researcher, frustrated by the unavailability of effective treatments for some conditions. This led to decades of working to understand patients' needs and the complexities and subtleties of their visual systems and conditions. It was followed by many iterations of developing vision aids and the techniques needed to objectively evaluate their benefit. I specifically address one path: the invention and development of peripheral prisms to expand the visual fields of patients with homonymous hemianopia, leading to our latest multiperiscopic prism (mirror-based design) with its clear 45° field-of-view image shift.

Validation of a vision-related activity scale for patients with retinitis pigmentosa.

PURPOSE: There have been few systematic reports of vision-related activity limitations of people with retinitis pigmentosa (RP). We report a merging of data from the National Eye Institute Visual Function Questionnaire (NEI-VFQ) obtained in five previous studies. We asked whether the Vision Function Scale (VFS; Pesudovs et al., 2010) which was developed for cataract patients would apply in this new population (condition). METHODS: Five hundred ninety-four individuals completed a total of 1753 questionnaires, with 209 participants providing responses over at least 4 years. Rasch analysis showed that the 15-item VFS was poorly targeted. A new instrument created by adding four driving-related items to the VFS had better targeting. As an indirect validation, VFS-plus person scores were compared to visual field area measured using a Goldmann perimeter, to the summed score for the combined 30-2 and 30/60-1 Humphrey Field Analyzer programs (HFA), to 30-Hz full-field cone electroretinogram (ERG) amplitude, and to ETDRS visual acuity. Changes in VFS-plus person scores with age and between four common heredity groups were also examined. RESULTS: The Rasch model of responses to the 19 VFS-plus items had person and item separation of 2.66 and 24.43 respectively. The VFS-plus person scores were related to each vision measure (p < 0.001). Over a five-year period, there was a reduction in person scores of 0.5 logits (p < 0.001). Person scores fell by an average of 0.34 logits per decade (p < 0.0001). Participants with an X-linked hereditary pattern had, on average, lower person scores (p < 0.001). CONCLUSIONS: The VFS-plus instrument quantified a highly-significant annual reduction in perceived vision-related ability over a five-year period. The outcome was consistent with clinical measures of vision, and detected lower perceived vision-related ability in participants with X-linked disease. It may be of use in future studies, but this needs to be tested in a representative population sample.