Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration

Purpose To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care. Design Recommendations from a working group of international experts in macular degeneration outcomes registry development and patient advocates, facilitated by the International Consortium for Health Outcomes Measurement (ICHOM). Methods Modified Delphi technique, supported by structured teleconferences, followed by online surveys to drive consensus decisions. Potential outcomes were identified through literature review of outcomes collected in existing registries and reported in major clinical trials. Outcomes were refined by the working group and selected based on impact on patients, relationship to good clinical care, and feasibility of measurement in routine clinical practice. Results Standardized measurement of the following outcomes is recommended: visual functioning and quality of life (distance visual acuity, mobility and independence, emotional well-being, reading and accessing information); number of treatments; complications of treatment; and disease control. Proposed data collection sources include administrative data, clinical data during routine clinical visits, and patient-reported sources annually. Recording the following clinical characteristics is recommended to enable risk adjustment: age; sex; ethnicity; smoking status; baseline visual acuity in both eyes; type of macular degeneration; presence of geographic atrophy, subretinal fibrosis, or pigment epithelial detachment; previous macular degeneration treatment; ocular comorbidities. Conclusions The recommended minimum outcomes and pragmatic reporting standards should enable standardized, meaningful assessments and comparisons of macular degeneration treatment outcomes. Adoption could accelerate global improvements in standardized data gathering and reporting of patient-centered outcomes. This can facilitate informed decisions by patients and health care providers, plus allow long-term monitoring of aggregate data, ultimately improving understanding of disease progression and treatment responses

The UK clinical eye research strategy: refreshing research priorities for clinical eye research in the UK

To validate and update the 2013 James Lind Alliance (JLA) Sight Loss and Vision Priority Setting Partnership (PSP)'s research priorities for Ophthalmology, as part of the UK Clinical Eye Research Strategy. Twelve ophthalmology research themes were identified from the JLA report. They were allocated to five Clinical Study Groups of diverse stakeholders who reviewed the top 10 research priorities for each theme. Using an online survey (April 2021-February 2023), respondents were invited to complete one or more of nine subspecialty surveys. Respondents indicated which of the research questions they considered important and subsequently ranked them. In total, 2240 people responded to the survey (mean age, 59.3 years), from across the UK. 68.1% were female. 68.2% were patients, 22.3% healthcare professionals or vision researchers, 7.1% carers, and 2.1% were charity support workers. Highest ranked questions by subspecialty: Cataract (prevention), Cornea (improving microbial keratitis treatment), Optometric (impact of integration of ophthalmic primary and secondary care via community optometric care pathways), Refractive (factors influencing development and/or progression of refractive error), Childhood onset (improving early detection of visual disorders), Glaucoma (effective and improved treatments), Neuro-ophthalmology (improvements in prevention, diagnosis and treatment of neurodegeneration affecting vision), Retina (improving prevention, diagnosis and treatment of dry age-related macular degeneration), Uveitis (effective treatments for ocular and orbital inflammatory diseases). A decade after the initial PSP, the results refocus the most important research questions for each subspecialty, and prime targeted research proposals within Ophthalmology, a chronically underfunded specialty given the substantial burden of disability caused by eye disease. [Abstract copyright: © 2024. The Author(s).

Ophthalmology research in the UK’s National Health Service: the structure and performance of the NIHR’s Ophthalmology research portfolio

Purpose- To report on the composition and performance of the portfolio of Ophthalmology research studies in the United Kingdom’s National Institute for Health Research (NIHR) Clinical Research Network (UK CRN). Methods- Ophthalmology studies open to recruitment between 1 April 2010 and 31 March 2018 were classified by: sub-specialty, participant age, gender of Chief Investigator, involvement of genetic investigations, commercial/ non-commercial, interventional/observational design. Frequency distributions for each covariate and temporal variation in recruitment to time and target were analysed. Results- Over 8 years, 137,377 participants were recruited (average of 15,457 participants/year; range: 5485–32,573) with growth by year in proportion of commercial studies and hospital participation in England (76% in 2017/18). Fourteen percent of studies had a genetic component and most studies (82%) included only adults. The majority of studies (41%) enrolled patients with retinal diseases, followed by glaucoma (17%), anterior segment and cataract (13%), and ocular inflammation (6%). Overall, 68% of non-commercial studies and 55% of commercial studies recruited within the anticipated time set by the study and also recruited to or exceeded the target number of participants. Conclusions- High levels of clinical research activity, growth and improved performance have been observed in Ophthalmology in UK over the past 8 years. Some sub-specialties that carry substantial morbidity and a very high burden on NHS services are underrepresented and deserve more patient-centred research. Yet the NIHR and its CRN Ophthalmology National Specialty Group has enabled key steps in achieving the goal of embedding research into every day clinical care

Ground Penetration Radar in Geotechnics. Advantages and Limitations

The use of the Ground Penetration Radar (GPR) in geotechnics presents great potential, but also relevant difficulties. This technique allows the acquisition of field data in a fast and versatile way, facilitating the interconnection between the geological studies, the geophysical characterization, the mechanical exploration and the geotechnical zoning. The depth and accuracy of data acquisition easily adapts to various situations ranging from a few centimetres to several tens of meters, changing to antennas with lower frequency. This near surface and non-destructive test method can be used almost anywhere. The continuity of the information obtained with the GPR complements the discreet and localized information obtained with the mechanical exploration. The validation of the local geological conditions using direct mechanical exploration together with the GPR imaging allows the confirmation of the parameters obtained by techniques of different nature, that once validated can allow the interpretation of areas and volumes with improved accuracy. In favourable conditions the use of the GPR can greatly help the direct mechanical exploration but the interpretation must always be done with great care and based on a good knowledge of the site characteristics. The interpretation of the GPR has in most cases many uncertainties. The research developed aimed at increasing the geotechnical characterization efficiency, using complementary techniques in order to reduce the costs and the time required to perform the geotechnical studies, ensuring that the information obtained is suitable and sufficient for the intended purposes. In a few case studies the GPR was used conjugated with trenches and the Dynamic Probing Super Heavy (DPSH) test, and allowed to enhance the individual information of each technique, increasing reliability, taking into account the importance of the geology of each site. In the geotechnical study for the rehabilitation of an ancient Villa, requiring the construction of a small auditorium in the basement and an underground garage in the garden, the GPR and the DPSH successfully allowed to define the geotechnical zoning of the surface soils and of the depth of the sandstone bedrock, as the local information obtained by the DPSH allowed to validate the GPR imaging. The presence of buried pipes and of an underground water tank were also identified by a GPR grid. In karst areas the interpretation of the GPR can be complex due to the irregular geological interface between the limestone and the residual soils filling the dissolution zones. In aeolian sands the layers structure and the change in grain size are usually well identified with the GPR imaging, which can be validated by the geological reconnaissance and the mechanical exploration. Besides the natural variation of the electromagnetic properties of the ground mass, unexpected causes like tree roots, uncontrolled fill or even previous excavations can difficult a clear interpretation of the GPR data