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. Patients managed within the Uveitis service at GOSH were invited to take part in a pre–post survey, undertaken immediately prior to and following viewing of a patient education video. Results: Forty-three patients participated. These were stratified according to age, duration of disease, and treatment type for analysis. Self-rated knowledge improved across all groups (p = 0.001), particularly in those with a new diagnosis of uveitis (Z = −8.124, p < 0.001). Objective knowledge scores improved across all questions, especially in younger children, those with new disease, and those on steroid only treatment (Z = −3.847, p < 0.001, Z = −3.975, p < 0.001, Z = −3.448, p < 0.001; respectively). Most participants reported the videos to be easy to understand and with the right amount of information. All stated that they learned something new. Conclusions: Patient understanding of disease and treatment is crucial to achieving the best possible outcomes for this chronic, relapsing remitting and potentially blinding disorder. Our findings data shows the potential value of co-designed patient information videos, specifically in our study benefitting younger patients and those recently diagnosed. We suggest that other clinical teams could collaborate fruitfully with patient groups to develop similar videos to target possible misinformation and potentially improve patient outcomes

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

Background: The utility of medical imaging is dependent 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. A novel three-level grading system (good, limited or poor) was developed based on the presence of image artefact (categorised as lid, eyelash, cropping, glare, or movement artefact). Three independent experts graded 2825 images, with agreement assessed using confusion matrices and intraclass correlation coefficients (ICC) for each parameter. Results: There was very good inter-grader IQA agreement assessing image quality with ICC 0.85 (95%CI: 0.84-0.87). The most commonly occurring artefact was eyelash artefact (1008/2825 images, 36%). Graders labelled 621/2825 (22%) images as good and 384 (14%) as poor. There was complete agreement at either end of the confusion matrix with no ‘good’ images labelled as ‘poor’ by other graders, and vice versa. Similarly, there was very good agreement when assessing presence of lash (0.96,0.94-0.98), movement (0.97,0.96-0.99), glare (0.82,0.80-0.84) and cropping (0.90,0.88-0.92). Conclusions: The novel image quality assessment criteria (IQAC) described here have good interobserver agreement overall, and excellent agreement on the differentiation between ‘good’ and ‘poor’ quality images. The large proportion of images graded as ‘limited’ suggests the need for refine this classification, using the specific IQAC features, for which we also report high interobserver agreement. These findings support the future potential for wider clinical and community care implementation of AS-OCT for the diagnosis and monitoring of ocular disease

Supporting positive patient experiences for rare disease care during disruptive times: findings from a multicentre study

Introduction: We describe the perceptions and experiences of health care services during the COVID-19 pandemic of those newly diagnosed with a rare, chronic inflammatory eye disorder. Methods: We undertook a cross-sectional study nested within a longitudinal multi-centre inception cohort study. Participants were families and young people (aged under 18 years) newly diagnosed with childhood uveitis. Using a validated tool, the Health Foundation COVID-19 Survey, we captured qualitative and quantitative data. Quantitative data were analysed using descriptive summary statistics. Qualitative, free text responses were analysed using content and thematic analysis. Results: Responses received from 60 families between 1st September 2020 and 30th March 2022 were analysed. Despite two in five reporting challenges in accessing medication, the majority felt comfortable accessing healthcare services (8%, 95% CI 3 - 18%, of participants expressed discomfort, versus 28%, 95% CI 26 – 28% of general population). Thematic analysis identified five themes: the value of protected spaces to safely access care; the positive role of digital health tools the experience of immature telemedicine; disintegration of care; and dealing with uncertainty. Discussion: Our findings suggest that families of children with a rare chronic condition had greater confidence in accessing healthcare during the pandemic than the general population. Nevertheless, to ensure more robust health services for such populations in future times of disruption, developments in telemedicine should be directly informed by the experiences of those with rare disease. The development of new healthcare processes which ensure the whole healthcare team has adequate information to support families should be prioritised

Optical Coherence Tomography Angiography-Confirmed Paracentral Acute Middle Maculopathy Associated With SARS-CoV-2 Infection

Retinal manifestations have been reported in Covid-19 patients including paracentral acute middle maculopathy (PAMM) and vasculitis.1-4 A case series of 12 visually asymptomatic Covid-19 patients reported inner retinal hyper-reflective bands despite normal optical coherence tomography angiography (OCT-A).1 Concerns about this report have been raised in another article.5 We describe the first case of OCT-A confirmed SARS-CoV-2-related PAMM

Long-term ocular and visual outcomes following symptomatic and asymptomatic congenital CMV infection: a systematic review protocol

Cytomegalovirus (CMV) is one of the most common congenitally acquired infections worldwide. Visual impairment is a common outcome for symptomatic infants, with long-term ophthalmic surveillance often recommended. However, there are no clear guidelines for ophthalmic surveillance in infants with asymptomatic disease. We aim to conduct a systematic review to establish the overall prevalence and incidence of eye and vision related disorders following congenital CMV infection (cCMV).A systematic review and meta-analysis (pending appropriate data for analysis) of cross-sectional and longitudinal studies will be conducted. The PubMed, Embase and CINAHL databases will be searched up to 29 March 2022 without date or language restrictions. Studies will be screened by at least two independent reviewers. Methodological quality of included studies will be assessed using the Joanna Briggs Institute tool. The primary outcome measures will be incidence and/or prevalence of vision impairment or ophthalmic disorders in patients with symptomatic and asymptomatic cCMV infection. A narrative synthesis will be conducted for all included studies. The overall prevalence will be estimated by pooling data using a random-effects model. Heterogeneity between studies will be estimated using Cochran's Q and the I2 statistics. Egger's test will be used to assess for publication bias.Ethical approval is not required as there is no primary data collection. Study findings will be disseminated at scientific meetings and through publication in peer-reviewed journals.This is not a clinical trial, but the protocol has been registered: CRD42021284678 (PROSPERO). </h4