Socioeconomic and demographic patterning of family uptake of a paediatric electronic patient portal innovation.

Patient portals allowing access to electronic health care records and services can inform and empower but may widen existing sociodemographic inequities. We aimed to describe associations between activation of a paediatric patient portal and patient race/ethnicity, socioeconomic status and markers of previous engagement with health care. A retrospective single site cross-sectional study was undertaken to examine patient portal adoption amongst families of children receiving care for chronic or complex disorders within the United Kingdom.

Imaging-Based Detection of Anterior Chamber Inflammation: A Comparative Diagnostic Accuracy Study.

Purpose: We investigated the impact of operator parameters on the diagnostic performance of anterior-segment optical coherence tomography (AS-OCT) in anterior uveitis.

Design: Prospective comparative diagnostic analysis.

Methods: Setting: Single site.

Associations between unilateral amblyopia in childhood and cardiometabolic disorders in adult life: a cross-sectional and longitudinal analysis of the UK Biobank.

Background: Amblyopia is a common neurodevelopmental condition and leading cause of childhood visual impairment. Given the known association between neurodevelopmental impairment and cardiometabolic dysfunction in later life, we investigated whether children with amblyopia have increased risk of cardiometabolic disorders in adult life.

Methods: This was a cross-sectional and longitudinal analysis of 126,399 United Kingdom Biobank cohort participants who underwent ocular examination.

Periodontitis and Outer Retinal Thickness: a Cross-Sectional Analysis of the United Kingdom Biobank Cohort.

Purpose: Periodontitis, a ubiquitous severe gum disease affecting the teeth and surrounding alveolar bone, can heighten systemic inflammation. We investigated the association between very severe periodontitis and early biomarkers of age-related macular degeneration (AMD), in individuals with no eye disease.

Design: Cross-sectional analysis of the prospective community-based cohort United Kingdom (UK) Biobank.

UNICORNS: Uveitis in childhood prospective national cohort study protocol.

: Childhood uveitis is a rare inflammatory eye disease which is typically chronic, relapsing-remitting in nature, with an uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long term outcome is lacking, including the predictors of therapeutic response or how to define disease control.

Evaluating the Quantity and Quality of Health Economic Literature in Blinding Childhood Disorders: A Systematic Literature Review.

Background: Evidence on the socioeconomic burden associated with childhood visual impairment, severe visual impairment and blindness (VI/SVI/BL) is needed to inform economic evaluations of existing and emerging interventions aimed at protecting or improving vision. This study aimed to evaluate the quantity and quality of literature on resource use and/or costs associated with childhood VI/SVI/BL disorders.

Methods: PubMed, Web of Science (Ovid), the National Health Service (NHS) Economic Evaluation Database and grey literature were searched in November 2020.

Quality assessment of anterior segment OCT images: Development and validation of quality criteria.

Background: The utility of medical imaging is dependant on image quality. We aimed to develop and validate quality criteria for ocular anterior segment optical coherence tomography (AS-OCT) images.

Methods: We undertook a cross-sectional study using AS-OCT images from patients aged 6-16.

Evaluation of variation in special educational needs provision and its impact on health and education using administrative records for England: umbrella protocol for a mixed-methods research programme.

Introduction: One-third of children in England have special educational needs (SEN) provision recorded during their school career. The proportion of children with SEN provision varies between schools and demographic groups, which may reflect variation in need, inequitable provision and/or systemic factors. There is scant evidence on whether SEN provision improves health and education outcomes.

Trends in the long-term impact of childhood visual impairment on health and social outcomes in the UK: a cross-cohort study across three decades of disability-related legislation and policy implementation.

Background: Childhood vision impairment (VI) can adversely impact health and social outcomes and limit life chances. We investigated whether its adverse impacts into adult life changed during a period in which legislation, policy and services to address inequalities relating to disability were implemented.

Methods: Cross-cohort study comprising 14 247 participants from the 1946, 1958 and 1970 British birth cohorts (BC).

Data saves lives: optimising routinely collected clinical data for rare disease research.

Necessity driven organisational change in the post-pandemic landscape has seen health care providers adopting innovations to manage and process health data. These include the use of 'real-world' datasets of routinely collected clinical information, enabling data-driven delivery. Rare disease risks being 'left-behind' unless our clinical and research communities engage with the challenges and opportunities afforded by the burgeoning field of health data informatics.

Retinal Optical Coherence Tomography Features Associated With Incident and Prevalent Parkinson Disease.

Background And Objectives: Cadaveric studies have shown disease-related neurodegeneration and other morphological abnormalities in the retina of individuals with Parkinson disease (PD); however, it remains unclear whether this can be reliably detected with in vivo imaging. We investigated inner retinal anatomy, measured using optical coherence tomography (OCT), in prevalent PD and subsequently assessed the association of these markers with the development of PD using a prospective research cohort.

Methods: This cross-sectional analysis used data from 2 studies.

Delayed diagnosis of congenital cataract in preterm infants: Findings from the IoLunder2 cohort study.

Background And Objectives: Early detection is critical to achieving optimal outcomes in children with congenital cataract. We hypothesized that detection of congenital cataract in preterm infants would be delayed compared with term/post-term peers due to delayed delivery of whole population child health interventions.

Methods: Secondary analysis of data using a nested case-control study approach in a prospective population-based cohort study.

Limited Utility of Keratic Precipitate Morphology as an Indicator of Underlying Diagnosis in Ocular Inflammation.

Objectives: We aimed to establish the degree of consensus among clinicians on descriptors of KP morphology.

Methods: A web-based exercise in which respondents associated KP descriptors, as identified through a scoping review of the published literature, to images from different disorders. Inter-observer agreement was assessed using the Krippendorff kappa alpha metric.

Show don't tell: assessing the impact of co-developed patient information videos in paediatric uveitis.

Background/objectives: There is a paucity of online educational content targeting children and young people with uveitis. We evaluated the impact of a co-designed patient education video on subjective and objective understanding of childhood uveitis.

Subjects/methods: Co-designed patient education media were produced in collaboration with the Childhood Uveitis Studies steering group and the Great Ormond Street Hospital Generation R Young People's Advisory Group and narrated by children.

Determinants of non-attendance at face-to-face and telemedicine ophthalmic consultations.

Background/aims: Evaluation of telemedicine care models has highlighted its potential for exacerbating healthcare inequalities. This study seeks to identify and characterise factors associated with non-attendance across face-to-face and telemedicine outpatient appointments.

Methods: A retrospective cohort study at a tertiary-level ophthalmic institution in the UK, between 1 January 2019 and 31 October 2021.

Educational attainment and trajectories at key stages of schooling for children with amblyopia compared to those without eye conditions: Findings from the Millennium Cohort Study.

Background: Amblyopia is a neurodevelopmental condition resulting in reduced vision for which whole population child vision screening is undertaken. Cross-sectional studies have established an association between amblyopia and lower academic self-concept, slower reading speed. No difference has been found in educational performance in adolescence whilst there are mixed associations with educational attainment in adults.

The impact of childhood glaucoma on psychosocial functioning and quality of life: a review of the literature.

We present a novel comprehensive literature review of studies of the psychosocial functioning (PF) and quality of life (QoL) of patients with childhood glaucoma and their caregivers. Our findings demonstrate variable study quality and approach, as well as inconsistent results relating to the association of glaucoma-specific factors and sociodemographic variables with measured PF and QoL. Future studies should focus on the development of culturally cognizant and standardized assessment tools, execution of multi-center longitudinal studies with global representation, evaluation of PF and QoL among siblings and childhood glaucoma providers, and implementation of interventions to improve patient and caregiver PF and QoL.

Association Between Retinal Features From Multimodal Imaging and Schizophrenia.

Importance: The potential association of schizophrenia with distinct retinal changes is of clinical interest but has been challenging to investigate because of a lack of sufficiently large and detailed cohorts.

Objective: To investigate the association between retinal biomarkers from multimodal imaging (oculomics) and schizophrenia in a large real-world population.

Design, Setting, And Participants: This cross-sectional analysis used data from a retrospective cohort of 154 830 patients 40 years and older from the AlzEye study, which linked ophthalmic data with hospital admission data across England.

Incidence, aetiology and neurodisability associated with severe microcephaly: a national surveillance study.

Objective: To determine the incidence, causes and neurodevelopmental impact of severe microcephaly (head circumference <-3SD) up to age 2 years.

Design: Binational active paediatric surveillance study undertaken in 2017-2018 to identify and characterise new diagnoses of severe microcephaly.

Setting: UK and Ireland.

Do adolescents with impaired vision have different intentions and ambitions for their education, career and social outcomes compared to their peers? Findings from the Millennium Cohort Study.

Background/aims: To investigate if impaired vision adversely impacts the intentions/ambitions of adolescents concerning their future education, careers and social outcomes.

Methods: Population-based birth cohort study in the UK comprising 9273 participants from the Millennium Cohort Study who were followed up to age 17 years. Children were classified as having normal vision or unilateral or bilateral impaired vision caused by significant eye conditions based on detailed parental-structured questionnaire data on sight problems and treatment coded by clinicians.

Avoidable childhood blindness in a high-income country: findings from the British Childhood Visual Impairment and Blindness Study 2.

Background/aims: Addressing childhood visual disability is an international priority, with data on causes needed to plan, implement and evaluate public health and clinical care. We have examined the contribution of 'avoidable' blinding disorders to childhood visual impairment, severe visual impairment and blindness (VI/SVIBL) in the UK.

Methods: National prospective observational longitudinal study, the British Childhood Visual Impairment and Blindness Study 2 (BCVIS2), of children (aged 18 years or under) newly diagnosed with vision worse than 0.

Association analyses of rare variants identify two genes associated with refractive error.

Purpose: Genetic variants identified through population-based genome-wide studies are generally of high frequency, exerting their action in the central part of the refractive error spectrum. However, the power to identify associations with variants of lower minor allele frequency is greatly reduced, requiring considerable sample sizes. Here we aim to assess the impact of rare variants on genetic variation of refractive errors in a very large general population cohort.

Development of a Nationally Agreed Core Clinical Dataset for Childhood Onset Uveitis.

Background: Childhood onset uveitis comprises a group of rare inflammatory disorders characterized by clinical heterogeneity, chronicity, and uncertainties around long term outcomes. Standardized, detailed datasets with harmonized clinical definitions and terminology are needed to enable the clinical research necessary to stratify disease phenotype and interrogate the putative determinants of health outcomes. We aimed to develop a core routine clinical collection dataset for clinicians managing children with uveitis, suitable for multicenter and national clinical and experimental research initiatives.