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.

A practical approach to uveitis screening in children with juvenile idiopathic arthritis.

Background: Juvenile idiopathic arthritis (JIA)-associated uveitis typically presents as a silent chronic anterior uveitis and can lead to blindness. Adherence to current screening guidelines is hampered by complex protocols which rely on the knowledge of specific JIA characteristics. The Multinational Interdisciplinary Working Group for Uveitis in Childhood identified the need to simplify screening to enable local eye care professionals (ECPs), who carry the main burden, to screen children with JIA appropriately and with confidence.

Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study.

Background: Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom.

Target Product Profile for a Machine Learning-Automated Retinal Imaging Analysis Software for Use in English Diabetic Eye Screening: Protocol for a Mixed Methods Study.

Background: Diabetic eye screening (DES) represents a significant opportunity for the application of machine learning (ML) technologies, which may improve clinical and service outcomes. However, successful integration of ML into DES requires careful product development, evaluation, and implementation. Target product profiles (TPPs) summarize the requirements necessary for successful implementation so these can guide product development and evaluation.

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.

Ocular inflammatory events following COVID-19 vaccination: reporting of suspected adverse drug reactions to regulatory authorities in the UK.

Background/aims: The UK Medicines and Healthcare products Regulatory Agency (MHRA) has published suspected adverse drug reactions to vaccines against COVID-19. Ocular inflammatory events following COVID-19 vaccination have been reported worldwide.

Methods: We analysed MHRA data on spontaneous reports of suspected ocular inflammatory events following COVID-19 vaccination between January 2021 and September 2022.

Face-down positioning or posturing after macular hole surgery.

Background: Macular holes cause severe impairment of sight. With the aim of improving the outcome of surgery for macular holes, particularly larger macular holes (those measuring over 400 μm), a variable period of face-down positioning may be advised. This review is an update of a Cochrane Review published in 2011.

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.

The Experience of Menarche for Young People With Sensory and Motor Impairments: A Systematic Review.

Young people with disabilities may face barriers to optimal management of menstrual health, including the management of menarche, a unique stage of development. This systematic review examined the barriers to and facilitators of a positive experience of menarche for young people with visual, hearing, or mobility impairments. The MEDLINE, Embase, PsychINFO bibliographic databases, and grey literature were systematically searched in February 2022 to identify relevant research.

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.

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.

Why Do We Treat? Defining Disease Control in Juvenile Idiopathic Arthritis-Associated Uveitis.

In a recent issue of , Berard et al reported on the development of the Canadian recommendations for the screening, monitoring, and treatment of uveitis associated with juvenile idiopathic arthritis ( JIA). The guidance from this national multidisciplinary JIA-associated uveitis working group had a welcome and necessary focus on the importance of disease control but omitted a definition of controlled disease.

Ocular Inflammatory Events Following COVID-19 Vaccination in the Paediatric Population: A Multinational Case Series.

Background: Ocular inflammatory events following COVID-19 vaccination have been reported in the adult population.

Methods: Multinational case series of patients under the age of 18 diagnosed with ocular inflammatory events within 28 days of COVID-19 vaccination.

Results: Twenty individuals were included.

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.

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.