7†Scoping review of homonymous hemianopia in childhood.

Cerebral visual impairment (CVI) encompasses a heterogeneous group of disorders and a spectrum of types of visual impairments. Research is needed to characterise the different forms of CVI and identify the specific needs of these groups to inform individualised patient care. Homonymous hemianopia (HH) is a definable visual field defect that affect some children with CVI. As part of a new research programme, we conducted a scoping review of the literature on HH in children and young people to map current knowledge and identify evidence gaps.We used the PRISMA extension for Scoping Reviews methodology. Multiple online databases were searched using terms associated with 'homonymous hemianopia' and 'children'. This yielded 1588 papers which were screened by two reviewers. Of these 1001 were excluded at abstract screen and a further 415 excluded after full text review, with full text unavailable for 15. Data were extracted and charted from 157 studies and additional grey literature.Interim analysis shows reported studies are predominantly from high income countries with a paucity of higher-level evidence, and a preponderance of case reports. Most papers reported causative pathology and diagnosis of HH. There was minimal attention to or evidence relating to intervention. Child-specific grey literature on HH was limited.This review collates the current evidence-base for HH in children. It demonstrates the important evidence-gap relating to intervention in these cases that would help inform more individualised care. Similar scoping reviews may be prove useful in assessing the evidence relating to other definable groups within the CVI umbrella.

Impact of the COVID-19 pandemic on the research activities of UK ophthalmologists.

BACKGROUND: The COVID-19 pandemic has impacted negatively on many areas of biomedical research and there is concern that academic recovery will take several years. This survey aimed to define the impact of the COVID-19 pandemic on UK ophthalmologists' research activities and understand the implications for recovery. METHODS: An online survey comprising multiple choice and free-text questions was designed, piloted and then distributed to Royal College of Ophthalmologists (RCOphth) members in January 2021. Respondent characteristics, research expectations and experiences through the pandemic were captured. Descriptive and comparative statistics were applied to quantitative data alongside content analysis of qualitative data. RESULTS: In total, 148 respondents (3.7% of RCOphth membership) comprised 46 trainees (31.1%), 97 consultants (65.5%) and 5 SAS doctors (3.4%); 54 had clinical-academic roles (36.5%) and 65/94 (69.1%) ophthalmologists with fully clinical posts identified as research-active. Of 114 research-active respondents, 104 (91.2%) reported an impact on their research from COVID-19; negative impacts included loss of research time (n = 69), research delays (n = 96) and funding shortfalls (n = 63). Content analysis identified five common themes; type of research activity, clinical demands, institutional challenges, COVID-19 alignment and work-life balance. CONCLUSIONS: UK ophthalmology research has been adversely impacted by the pandemic. A substantial proportion of UK ophthalmologists are research active, but 20.4% of those surveyed felt that the pandemic had made research less attractive. Strategic steps must be taken to nurture UK ophthalmologists' engagement with research, especially for those who currently do no research, if the profession is to align itself with the Government vision of 'Research for All'.

Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment.

PurposeTo identify the views and experiences and thus the transition-related needs of young people with visual impairment (VI), so as to inform future practice and policies.Patients and methodsQualitative study of 17 young people aged 16-19 years (ie the conventional transition age threshold) with VI (best-corrected acuity logMAR worse than 0.48) and without additional impairments, drawn from a sampling frame of paediatric ophthalmology patients attending Great Ormond Street Hospital and Moorfields Eye Hospital (London, UK). In-depth, semistructured interviews were conducted to elicit their experiences, preferences, and attitudes towards transitioning within health care. Qualitative thematic analysis identified themes related to participants' experience of transition.ResultsEight of 17 participants had transitioned out of paediatric ophthalmology services, 7 had not, and 2 were unsure. Their views and experiences varied. Only 2 of those who had transitioned preferred their prior paediatric service, and 1 still in a paediatric services did not want to transition. Age-appropriate communication and physical clinical environment were two key components of care, both associated with greater confidence to self-manage health care in the future as an adult. Emotional attachment to paediatric services/teams was associated with reluctance to transition.ConclusionsGeneric guidance on transition is broadly applicable to children/young people with VI. Age-appropriate communication and appropriate physical clinical environments may be optimally delivered through adolescent ophthalmology services bridging paediatric and adult provision. Lack of research on transitions in paediatric ophthalmology has thus far restricted intervention studies; our findings serve to aid in developing an evidence base to achieve this.

One size doesn't fit all: time to revisit patient-reported outcome measures (PROMs) in paediatric ophthalmology?

The purpose of this article is to summarise methodological challenges and opportunities in the development and application of patient reported outcome measures (PROMs) for the rare and complex population of children with visually impairing disorders. Following a literature review on development and application of PROMs in children in general, including those with disabilities and or/chronic condition, we identified and discuss here 5 key issues that are specific to children with visual impairment: (1) the conflation between theoretically distinct vision-related constructs and outcomes, (2) the importance of developmentally appropriate approaches to design and application of PROMs, (3) feasibility of standard questionnaire formats and administration for children with different levels of visual impairment, (4) feasibility and nature of self-reporting by visually impaired children, and (5) epidemiological, statistical and ethical considerations. There is an established need for vision-specific age-appropriate PROMs for use in paediatric ophthalmology, but there are significant practical and methodological challenges in developing and applying appropriate measures. Further understanding of the characteristics and needs of visually impaired children as questionnaire respondents is necessary for development of quality PROMs and their meaningful application in clinical practice and research.

Congenital cataract associated with persistent fetal vasculature: findings from IoLunder2.

PurposeTo describe the frequency, characteristics, and treatment outcome of persistent fetal vasculature (PFV) in children undergoing surgery for congenital and infantile cataract in the first 2 years of life.Patients and methodsObservational population-based cohort study with case identification through active surveillance and standardised data collection via a national clinical network, the British Isles Congenital Cataract Interest Group (BCCIG).ResultsThe IoLunder2 cohort comprises 246 children undergoing surgery for bilateral and unilateral congenital and infantile cataract in the first 2 years of life. A total of 58/246 (24%) children had PFV (%): overall, 46/95 (46%) with unilateral cataract, and 12/141 (8%) with bilateral disease. Anterior segment vascular remnants were more common in bilateral than unilateral disease (75 vs 11%, P=0.01). At 1 year after surgery, 20% of children with bilateral PFV and 24% with unilateral had achieved normal vision for age within the operated eye. The prevalence of post-operative glaucoma was 9% (of children with bilateral disease) and 4% (unilateral).ConclusionPFV is significantly more common than previously reported, and outcomes are comparable to that for congenital and infantile cataract overall.

Seeing it my way: living with childhood onset visual disability.

BACKGROUND: Although the significant impact of visual disability in childhood has been widely recognized, children's own perspectives of living with a visual impairment have not been considered. We report the experiences of visually impaired (VI) children and young people aged 10-15 years about growing up with impaired sight. METHODS: The participants were 32 VI children and young people, aged 10-15 years [visual acuity logarithm of minimum angle of resolution (LogMAR) worse than 0.51] recruited through National Health Service (NHS) paediatric ophthalmology and developmental vision clinics and 11 VI pupils aged 12-17 attending a specialist school for pupils with disabilities. Individual semi-structured interviews with participants captured their experiences of living with a visual impairment. A child-centred interview topic guide was developed from a literature review, observations at ophthalmology clinics, consultation with health and education professionals working with VI children and young people, and interviews and a focus group with VI pupils from the specialist school. Collaborative qualitative thematic analysis by three researchers identified emergent themes. NVivo software was used for coding the data. RESULTS: Analysis identified six themes concerning living with a visual impairment: (i) social relationships, participation and acceptance; (ii) independence and autonomy; (iii) psychological and emotional well-being; (iv) aspirations and concerns about the future; (v) functioning - home, school and leisure; and (vi) treatment of eye condition. Key issues included: the importance of family and peer support; balancing independence, support and safety; the emotional burden and adjustment of living with a disability; concerns about education and job prospects in the future; functional restrictions and limitations; and ongoing management of the eye condition. CONCLUSIONS: The findings offer insights into the complex realities of living with visual impairment. They provide the basis for development of patient-reported outcome measures. They can also serve to help enrich the understanding of health professionals working with VI children and young people, potentially enabling them to better support them.

Cataract surgery and primary intraocular lens implantation in children < or = 2 years old in the UK and Ireland: finding of national surveys.

BACKGROUND: Current patterns of practice relating to primary intraocular lens (IOL) implantation in children < or =2 years old in the UK and Ireland are investigated. METHODS: National postal questionnaire surveys of consultant ophthalmologists in the UK and Ireland. RESULTS: 76% of 928 surveyed ophthalmologists replied. 47 (7%) of the respondents operated on children aged < or =2 with cataract. 41 (87%) of respondents performed primary IOL implantation, but 25% would not implant an IOL in a child under 1 year old. 88% of surgeons used limbal wounds, 80% manual capsulotomies, 98% posterior capsulotomies and 100% hydrophobic acrylic lenses. The SRK/T formula was most commonly used (70%). Exclusion criteria for primary IOL implantation varied considerably and included microphthalmos (64% of respondents), anterior and posterior segment anomalies (53%, 58%), and glaucoma (19%). DISCUSSION: Primary IOL implantation in children < or =2 has been widely adopted in the UK and Ireland. There is concordance of practice with regards to surgical technique and choice of IOL model. However, there is some variation in eligibility criteria for primary IOLs: this may reflect a lack of consensus on which children are most likely to benefit. Thus, there is a need for systematic studies of the outcomes of primary IOL implantation in younger children.

Provision and cost of children's and young people's eye services in the UK: findings from a single primary care trust.

AIMS/BACKGROUND: Population-based information is useful for future strategic planning of healthcare resources. We wished to describe and cost the provision of eye services, beyond those of basic primary and emergency care, for the paediatric population of a single primary care trust. METHODS: Data from healthcare purchaser and provider records were collected for the year 2004/5 on provision and costing of hospital eye services, provision of spectacle vouchers, orthoptic screening, social services and visual-impairment team services to children in the Huntingdonshire Primary Care Trust population. RESULTS: In the year of study, in a population of 33,564 aged under 18 years, 1870 (5.6%) children underwent screening by an orthoptist. 1970 (5.9%) children required outpatient appointments, 445 (1.3%) were prescribed spectacles, and 87 (0.3%) children needed surgical procedures. A small proportion (69, 0.2%) of children were visually impaired. The total cost of providing comprehensive eye services to children within Hunts PCT was pound 366,727. CONCLUSION: Although the prevalence of significant visual impairment is low in childhood, overall, eye conditions are common in children and may have lifelong implications. The resources required to provide a comprehensive paediatric eye service, to screen for and manage common eye conditions, and support those with serious eye conditions or visual impairment, are significant. This study aids quantified prediction of future service usage, and facilitates decision-making on resource allocation and workforce organisation for children's eye care in the UK.

Visual impairment due to undiagnosed refractive error in working age adults in Britain.

BACKGROUND: Detection and treatment of undiagnosed refractive error (RE), with its attendant functional consequences, is a priority of VISION 2020, the global initiative against avoidable visual disability. The authors investigated the frequency of visual impairment due to undiagnosed RE and its associations with vision-related quality of life (VRQOL), general health and social circumstances in a contemporary and nationally representative population of British working-age adults. METHODS: 9271 members of the 1958 British birth cohort had visual acuity and VRQOL assessed at 44/45 years. The authors compared those with undiagnosed RE with those with diagnosed RE, defining undiagnosed RE as >or=0.2 logMAR units/2 lines acuity improvement in both eyes with pinhole in individuals without current or prior optical treatment or ophthalmic history. RESULTS: 144/9271 (1.6%) individuals had undiagnosed and 3513/9271 (37.9%) diagnosed RE. 18% (24/144) of those with undiagnosed RE were classifiable as visually impaired. Individuals with undiagnosed RE were more likely to have a manual (vs non-manual) occupation and to be separated, divorced or widowed, and less likely to be in social or professional organisations. There is also some evidence that they are more likely to express concern, embarrassment and frustration about their eyesight and worry about coping with life. CONCLUSION: A significant proportion of working age adults in Britain appear to have undiagnosed but visually significant RE. Improvements in existing opportunities for detecting RE in adults could benefit these individuals during their working lives and avoid the serious adverse consequences associated with vision impairment in later life.

Capturing myopia and hypermetropia 'phenotypes' without formal refraction.

PURPOSE: Understanding genetic and environmental factors that together contribute to the development of myopia is an international research priority. We have investigated the feasibility and accuracy of identifying and classifying refractive error, without formal refraction, as a means of easily identifying affected individuals in a large-scale, non-ophthalmological, and population-based survey. METHODS: At age 44/45 years, members of the 1958 British birth cohort underwent a biomedical, community survey. Refractive error (autorefraction) was measured and categorised by spherical equivalent (SE) measurement; myopia (SE of -1.00 or more extreme), hypermetropia (+1.00 or more extreme), or emmetropia (-0.99 to +0.99). Lenses of prescribed distance glasses, if worn, were assessed as minifying, magnifying, or making no difference to a standard viewed image and cohort members reported on 'short' or 'long' sightedness. RESULTS: A total of 2499 cohort members, randomly selected, had formal refraction (autorefraction) and 917 (36.7%) of these individuals had their prescribed distance glasses examined. Sensitivities for myopia and hypermetropia using examination of glasses were over 80% and positive predictive values were 95 and 65% respectively whereas self-report of 'short-sightedness' or 'long-sightedness' had poor accuracy. CONCLUSION: We suggest examination of prescribed distance glasses can be an effective method of 'screening' for refractive error in the field, especially where prevalence is high.

Childhood blindness: a UK epidemiological perspective.

The purposes of this short paper are to introduce the reader to the aims of ophthalmic epidemiology and its relevance to clinical practice in ophthalmology and to vision science research. Summarise what is known currently about the epidemiology of severe visual impairment and blindness in childhood in the UK. Highlight the key gaps in our knowledge in this area and identify some of the most pressing challenges in terms of research.

Does amblyopia affect educational, health, and social outcomes? Findings from 1958 British birth cohort.

OBJECTIVE: To determine any association of amblyopia with diverse educational, health, and social outcomes in order to inform current debate about population screening for this condition. DESIGN, SETTING, AND PARTICIPANTS: Comparison of 8432 people with normal vision in each eye with 429 (4.8%) people with amblyopia (childhood unilateral reduced acuity when tested with correction and unaccounted for by eye disease) from the 1958 British birth cohort, with respect to subsequent health and social functioning. RESULTS: No functionally or clinically significant differences existed between people with and without amblyopia in educational outcomes, behavioural difficulties or social maladjustment, participation in social activities, unintended injuries (school, workplace, or road traffic accidents as driver), general or mental health and mortality, paid employment, or occupation based social class trajectories. CONCLUSIONS: It may be difficult to distinguish, at population level, between the lives of people with amblyopia and those without, in terms of several important outcomes. A pressing need exists for further concerted research on what it means to have amblyopia and, specifically, how this varies with severity and how it changes with treatment, so that screening programmes can best serve those who have the most to gain from early identification.

Impact of congenital colour vision defects on occupation.

AIMS: To investigate whether there is an association between congenital colour vision defects (CVD) and occupational choice and employment history, in order to inform the debate about the value of universal childhood screening for these disorders. METHODS: Participants were 6422 males and 6112 females from the 1958 British birth cohort, followed from birth to 33 years, whose colour vision was assessed (Ishihara test) at 11 years. RESULTS: A total of 431 males (6.7%) had CVD. Men with CVD had pursued some careers for which normal colour vision is currently regarded as essential; for example, eight men (3.1%) with CVD were in the police, armed forces, or fire-fighting service at 33 years compared to 141 men (3.8%) with normal colour vision. They were, however, under-represented compared to those with normal colour vision, in other occupations; for example, no men with CVD were employed in electrical and electronic engineering at 33 years compared to 15 men (0.4%) with normal colour vision. CONCLUSIONS: The findings of this study suggest there is little to be gained by continuing with existing school screening programmes for CVD, whose primary purpose is to advise affected children against certain careers. Other ways of informing young people about potential occupational difficulties and pathways for referral for specialist assessment are likely to be more useful.

Health services experiences of parents of recently diagnosed visually impaired children.

AIM: To investigate the health service experiences and needs of parents in the period around diagnosis of ophthalmic disorders in their children. METHODS: Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at a tertiary level hospital in London participated in a questionnaire survey, using standard instruments, followed by in-depth individual interviews, to elicit their views about the processes of care, their overall level of satisfaction, and their unmet needs. RESULTS: 67% (147) of eligible families (135 mothers, 76 fathers) participated. Overall satisfaction with care was high, being greater among parents of children with milder visual loss or isolated ophthalmic disorders than those with more severe visual loss or multiple impairments. Nevertheless, parents' reported greatest need was the provision of general information, including about their child's ophthalmic disorder and educational and social services and support. Mothers reported greater information needs than fathers, as did white parents compared to those from ethnic minorities. White parents also regarded the processes of care to be less comprehensive and coordinated, as well as less enabling, than did parents from ethnic minorities. CONCLUSIONS: Although parents reported high overall satisfaction with services, improving the medium, content, and scope of general information provided by professionals to parents of visually impaired children emerges as a priority. Equitable planning and provision of health services for families of children with visual impairment needs to take into account that informational and other needs vary by whether the parent is the primary carer or not and their ethnicity, as well as by the severity and complexity of their child's visual loss.

Engaging families in health services research on childhood visual impairment: barriers to, and degree and nature of bias in, participation.

AIM: To investigate the barriers to, and degree and nature of bias in, participation in health services research by parents of children with visual impairment. METHODS: Parents of children newly diagnosed with ophthalmic disorders at Great Ormond Street Hospital, London, participated in a study to elicit their health service experiences and needs through a postal questionnaire survey followed by in-depth interviews. The participating and non-participating families were compared at different stages of recruitment, according to sociodemographic and clinical characteristics. RESULTS: 20% (55) of all eligible families could not be invited to participate because of out of date contact details for either the family and/or family doctor in the hospital and/or community record systems. Completed questionnaires were received from 67% (147/221) of contacted families, although only 6% actively declined to take part. Compared to non-participating parents, those who took part were more likely to be white British, from higher socioeconomic groups, have English as their main language, and have no other visually impaired family members. There were no significant differences according to the clinical characteristics of their affected children. CONCLUSIONS: Families from socioeconomically deprived and ethnic minority groups are likely to be less visible than others in health services research on childhood visual impairment. Geographical mobility in families of young children with visual disability poses a potentially important obstacle to engaging them in research on their experiences of health services. These findings indicate the importance of addressing potential biases in the design and interpretation of future studies, to ensure equity in recommendations for policy and practice, and in implementation of services.

Ascertainment of children with congenital cataract through the National Congenital Anomaly System in England and Wales.

BACKGROUND/AIMS: Congenital ocular anomalies contribute significantly to childhood visual morbidity, with congenital cataract being a major cause of visual impairment throughout the world. As in many other countries, a National Congenital Anomaly System (NCAS) exists in England and Wales to monitor the frequency of ocular and other anomalies in order to identify new public health hazards and inform aetiological research. The aim of this study was to assess level of ascertainment by the NCAS of children with congenital cataract. METHODS: Using independent ophthalmic and paediatric national active surveillance schemes, all infants (< or =1 year) newly diagnosed with congenital and infantile cataract in England and Wales in 1 year from September 1995 were identified. These notifications were compared with those made independently to the NCAS during the same period. The proportion of cases identified by the active surveillance schemes and also notified to the NCAS was determined. RESULTS: 10% (15/149) of eligible children with newly diagnosed congenital or infantile cataract were actually notified to the NCAS. A higher proportion of those diagnosed as neonates (16%, 14/85) than in later infancy (2%, 1/64) was ascertained through the NCAS. There is a need for better verification of notifications and reported information in the NCAS. CONCLUSION: Currently, ascertainment of congenital cataract through the NCAS is low and the system is likely to be insensitive to small but important changes in risk factors for this disorder. This limits its use for monitoring secular and other trends in ocular anomalies. Strategies to improve its future use are discussed, including enhancing the awareness and participation of ophthalmic professionals involved in managing children with anomalies.