Allen Foster

Background: Globally, at least 2.6 billion people need rehabilitation services and more than 2.5 billion people need assistive technology (AT). However, reliable data are lacking on population level need for rehabilitation services and assistive products (AP) in different settings for evidence-based policy and programme planning. This first study paper describes the development of the Functional Needs Assessment Tool (FNAT), a new survey tool developed to fill this data gap between 2018 and 2023. Objective: To develop a new multidomain tool to assess population-level functional difficulties and need for service and AP utilising both self-report and clinical assessment methodologies. Development stages: FNAT was developed based upon primary and secondary data analysis, existing survey tools and expert consultation through a series of four steps: Step 1 Inform, Step 2 Build, Step 3 Draft and Step 4 Develop. FNAT uses both self-reported and clinical assessment tools to estimate the prevalence of functional difficulties/impairment and the need for services and AP in the following seven domains: vision, hearing, mobility, communication, cognition, self-care and mental health. It uses a two-stage population-based assessment with data collection through a bespoke tablet-based mobile application and web-based platform. Discussion: FNAT is a new multi-domain modular tool developed to address data gaps by estimating prevalence of functional difficulties and service/AP needs in a population. Potential advantages and disadvantages were highlighted during the development stages, and the tool needs to be pilot tested to assess the feasibility of the methodology and the functionality of the tablet-based mobile data collection application.

Purpose To describe presentation, treatment and outcomes for a cohort of children presenting with retinoblastoma (Rb) throughout Europe during 2017. Methods A prospective analysis of 483 patients diagnosed in Europe between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Results Unilateral cases 339/483 (70%) predominated, presenting older (mean age 26 months) than the 144 (30%) bilateral cases (mean age 12 months p < 0.0005). Only 4/477 (0.8%) children had extra-ocular Rb at presentation (mean age 53 months vs 21 months for those without p = 0.002). Children from middle income countries did not present older, but were more likely (p < 0.001) to present with late-stage disease (3-4) than high-income children (74/151 (49%) vs 108/332 (33%), RR 1.25 95%CI 1.09–1.44). For unilaterals, primary treatment was intravenous chemotherapy (IVC) in 29% and intra-arterial chemotherapy (IAC) in 20%. For bilaterals, primary treatment was IVC in 113/144 (78%) and IAC in 14/144 (10%). Overall, 58% of children underwent enucleation, 36% of which as primary treatment. Risk of enucleation was determined by stage and laterality, but not economic status. Twelve (2.5%) children died from Rb. More children (OR = 146-7 13.9–1549.4, p < 0.0005) presenting with extra-ocular tumour died (3 of 4 (75%)) than with intra-ocular tumour (9/449 (2%)) More children (OR = 29.8 3.8–232.0, p < 0.0005), from middle income countries died from Rb (11/132 (8%)) than from high income countries (1/327 (0.3%)). Conclusion Even within a wealthy continent such as Europe, economic factors may influence survival, but not global salvage rates. The majority of children still lose an eye.

Background/Objectives There is no specialist retinoblastoma (Rb) treatment centre in Afghanistan. We aimed to describe the first-year experience and outcome of referring Afghani children with Rb to Pakistan for treatment via the Afghanistan-Pakistan Rb “Silk-Road” referral pathway. Methods A 12-month prospective analysis (January 2023–January 2024) was conducted on children with suspected Rb presenting at National Organisation for Ophthalmic Rehabilitation (NOOR) eye care centres. Online consultations with specialists from the Rb-NET were used to confirm Rb diagnoses, and eligible patients were identified for referral to Rb treatment centres in Pakistan. Data on clinical presentation and outcomes were recorded using a structured Microsoft Excel spreadsheet, which was monitored by the entire team to ensure accuracy and completeness. The primary outcomes included successful transfer to Rb treatment centres in Pakistan and child survival at 1-year follow-up. Secondary outcomes focused on identifying barriers to successful patient transfer. Results Of the 23 children included in the study, 12/23 (52%) were referred due to leukocoria, 11/23 (48%) were female, 7/23 (30%) presented with bilateral Rb, and none had familial Rb. Overall, 5/23 (22%) children were diagnosed with extraocular disease, and 6/23 (26%) had distant metastases at the time of diagnosis. Only 9/23 (39%) children successfully reached Rb treatment centres in Pakistan. At the last follow-up, 5/23 (22%) children had died, 6/23 (26%) were confirmed alive, and 12/23 (52%) were lost to follow-up. The most common obstacles to patient transfer included difficulty crossing the Afghani/Pakistani border (12/23; 52%) and economic barriers (11/23; 48%) throughout the referral process. Conclusions This report highlights the immense difficulties in improving child survival from a treatable childhood cancer in a country with poor health care systems. The first-year experience of this referral pathway offers valuable lessons, which can guide the creation of a dedicated Rb treatment centre within Afghanistan.

This study analyses the use of the self-reported Washington Group (WG) question sets as a first stage screening to identify people with clinical impairments, service and assistive product (AP) referral needs using different cut-off levels in four functional domains (vision, hearing, mobility and cognition). Secondary data analysis was undertaken using population-based survey data from five countries, including one national survey (The Gambia) and four regional/district surveys (Cameroon, Chile, India and Turkey). In total 19,951 participants were sampled (range 538–9188 in individual studies). The WG question sets on functioning were completed for all participants alongside clinical impairment assessments/questionnaires. Using the WG “some/worse difficulty” cut-off identified people with mild/worse impairments with variable sensitivity (44–79%) and specificity (73–92%) in three of the domains. At least 64% and 60% of people with mild/worse impairments who required referral for surgical/medical and rehabilitation/AP services, respectively, self-reported “some/worse difficulty”, and much fewer reported “a lot/worse difficulty.” For moderate/worse impairment, both screening cut-offs improved identification of service/AP need, but a smaller proportion of people with need were identified. In conclusion, WG questions could be used as a first-stage screening option to identify people with impairment and referral needs, but only with moderate sensitivity and specificity.

Purpose: We aimed to review available data on the incidence of herpes simplex virus (HSV) keratitis and other HSV ocular disease and to estimate the global burden of HSV ocular disease. Methods: We searched Medline and Embase databases to October 2020 for studies reporting on the incidence of HSV ocular disease. Study quality was evaluated using a four-point checklist. Pooled estimates were applied to 2016 population data to estimate global HSV ocular disease burden. Numbers with uniocular vision impairment (any visual acuity 0.1 million cases. Based on global incidence, some 230,000 people may have newly acquired uniocular vision impairment associated with HSV keratitis in 2016. Conclusion: Over 1.8 million people may have herpetic eye disease annually. Preventing HSV infection could therefore have an important impact on eye health. Herpetic eye disease burden is likely to have been underestimated, as many settings outside of the USA and Europe have higher HSV-1 prevalence and poorer access to treatment.

Cataract surgery, quantity and quality, is an indicator of ophthalmic care. A comprehensive assessment of cataract surgical services has never been carried out in Palestine, including West Bank, Ga...

Few estimates are available of the need for assistive devices (ADs) in African settings. This study aimed to estimate population-level need for glasses and hearing aids in The Gambia based on (1) clinical impairment assessment, and (2) self-reported AD awareness, and explore the relationship between the two methods. The Gambia 2019 National Eye Health Survey is a nationally representative population-based sample of 9188 adults aged 35+ years. Participants underwent standardised clinical vision assessments including the need for glasses (distance and near). Approximately 25% of the sample underwent clinical assessment of hearing and hearing aid need. Data were also collected on self-reported awareness, need and access barriers to vision and hearing ADs. Overall, 5.6% of the study population needed distance glasses (95% CI 5.0–6.3), 45.9% (95% CI 44.2–47.5) needed near glasses and 25.5% (95% CI 22.2–29.2) needed hearing aids. Coverage for each AD was very low (<4%). The agreement between self-report and clinical impairment assessment for AD need was poor. In conclusion, there is high prevalence and very low coverage for distance glasses, near glasses and hearing aids in The Gambia. Self-report measures alone will not provide an accurate estimate of AD need.