ABSTRACT
BACKGROUND: Visual impairment is a global problem which is predicted to rise in the coming years. Some of the biggest causes of visual impairment globally include uncorrected refractive error, cataract and age-related macular degeneration. People with a visual impairment often require support and so many countries hold registers of visual impairment. These registers can sit at a national, regional or local level. This scoping review aims to identify which countries hold visual impairment registries and have published data from them. METHODS: Medline All, Embase and EBSCOHost were searched using several search terms after consulting an information specialist. All papers after the year 2000 were included in the scoping review. All results are shown using a PRISMA diagram and presented narratively. RESULTS: The total number of articles and papers identified was 1266; after screening and review, 57 articles were included in the review from 2000 to 2024. These articles came from 19 different countries and encompassed national, regional and local visual impairment databases. Many countries cited age-related macular degeneration as the major cause of blindness with diabetic retinopathy and glaucoma following. In less economically developed countries, refractive error was the main cause of sight loss. There were papers which focused on specific eye conditions such as glaucoma and diabetic retinopathy or on specific cohorts including working-age population and children. The leading causes of blindness in children appeared to be inherited retinal diseases, albinism and cerebral visual impairment. CONCLUSION: Certification of visual impairment is held differently across the world. There is commonality among different countries regarding the major causes of visual impairment in both adults and children. The importance of holding visual impairment registers to support people with a visual impairment and to plan services is essential.
ABSTRACT
TOPIC: Assessing reporting standards in glaucoma studies utilizing electronic health records (EHR). CLINICAL RELEVANCE: Glaucoma's significance, underscored by its status as a leading cause of irreversible blindness worldwide, necessitates reliable research findings. This study evaluates adherence to the CODE-EHR best-practice framework in glaucoma studies using EHR, aiming to improve clinical care and patient outcomes. METHODS: A systematic review, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (PROSPERO CRD42023430025), identified relevant studies (January 2022-May 2023) in MEDLINE, EMBASE, CINAHL, and Web of Science. Eligible studies, using EHR data from clinical institutions for glaucoma research, were assessed for study design, participant characteristics, EHR data, and sources. Quality appraisal used the CODE-EHR best-practice framework, focusing on data construction, linkage, fitness for purpose, disease and outcome definitions, analysis, and ethics and governance. RESULTS: Of 31 identified studies, predominant EHR sources were hospitals and clinical warehouses. Commonly reported elements included age, gender, glaucoma diagnosis, and intraocular pressure. Only 16% fully adhered to CODE-EHR best-practice framework's minimum standards, with none meeting preferred standards. While statistical analysis and ethical considerations were relatively well-addressed, areas such as EHR data management and study design showed room for improvement. Patient and public involvement, and acknowledgment of data linkage processes, data security, and storage reporting were often missed. CONCLUSION: Adherence to CODE-EHR best-practice framework's standards in EHR-based studies of glaucoma can be improved upon. Standardized reporting of EHR data are essential to ensure the reliability of research, facilitating its translation into clinical practice and improving healthcare decision-making for better patient outcomes. FINANCIAL DISCLOSURE(S): Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.