scholarly journals Enrolment in clinical research at UCLH and geographically distributed indices of deprivation

2021 ◽  
Vol 6 ◽  
pp. 342
Author(s):  
Holger Engleitner ◽  
Ashwani Jha ◽  
Daniel Herron ◽  
Amy Nelson ◽  
Geraint Rees ◽  
...  

Healthcare should be judged by its equity as well as its quality. Both aspects depend not only on the characteristics of service delivery but also on the research and innovation that ultimately shape them. Conducting a fully-inclusive evaluation of the relationship between enrolment in primary research studies at University College London Hospitals NHS Trust and indices of deprivation, here we demonstrate a quantitative approach to evaluating equity in healthcare research and innovation. We surveyed the geographical locations, aggregated into Lower Layer Super Output Areas (LSOAs), of all England-resident UCLH patients registered as enrolled in primary clinical research studies. We compared the distributions of ten established indices of deprivation across enrolled and non-enrolled areas within Greater London and within a distance-matched subset across England. Bayesian Poisson regression models were used to examine the relation between deprivation and the volume of enrolment standardized by population density and local disease prevalence. A total of 54593 enrolments covered 4401 LSOAs in Greater London and 10150 in England, revealing wide geographical reach. The distributions of deprivation indices were similar between enrolled and non-enrolled areas, exhibiting median differences from 0.26% to 8.73%. Across Greater London, enrolled areas were significantly more deprived on most indices, including the Index of Multiple Deprivation; across England, a more balanced relationship to deprivation emerged. Regression analyses of enrolment volumes yielded weak biases, in favour of greater deprivation for most indices, with little modulation by local disease prevalence. Primary clinical research at UCLH has wide geographical reach. Areas with enrolled patients show similar distributions of established indices of deprivation to those without, both within Greater London, and across distance-matched areas of England. We illustrate a robust approach to quantifying an important aspect of equity in clinical research and provide a flexible set of tools for replicating it across other institutions.

2019 ◽  
Vol 49 (1) ◽  
pp. 61-69 ◽  
Author(s):  
Christelle M. Follette ◽  
Michelle A. Giuffrida ◽  
Ingrid M. Balsa ◽  
William T. N. Culp ◽  
Philipp D. Mayhew ◽  
...  

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 503.1-504
Author(s):  
F. Ingegnoli ◽  
T. Schioppo ◽  
A. Herrick ◽  
A. Sulli ◽  
F. Bartoli ◽  
...  

Background:Nailfold capillaroscopy (NVC), a non-invasive technique to assess microcirculation, is increasingly being incorporated into rheumatology routine clinical practice. Currently, the degree of description of NVC methods varies amongst research studies, making interpretation and comparison between studies challenging. In this field, an unmet need is the standardization of items to be reported in research studies using NVC.Objectives:To perform a Delphi consensus on minimum reporting standards in methodology for clinical research, based on the items derived from a systematic review focused on this topic.Methods:The systematic review of the literature on NVC methodology relating to rheumatic diseases was performed according to PRISMA guidelines (PROSPERO CRD42018104660) to July 22nd2018 using MEDLINE, Embase, Scopus. Then, a three-step web-based Delphi consensus was performed in between members of the EULAR study group on microcirculation in rheumatic diseases and the Scleroderma Clinical Trials Consortium. Participants were asked to rate each item from 1 (not appropriate) to 9 (completely appropriate).Results:In total, 3491 references were retrieved in the initial search strategy, 2862 were excluded as duplicates or after title/abstract screening. 632 articles were retrieved for full paper review of which 319 fulfilled the inclusion criteria. Regarding patient preparation before the exam, data were scarce: 38% reported acclimatization, 5% to avoid caffeine and smoking, 3% to wash hands and 2% to avoid manicure. Concerning the device description: 90% reported type of instrument, 77% brand/model, 72% magnification, 46% oil use, 40% room temperature and 35% software for image analysis. As regards to examination details: 76% which fingers examined, 75% number of fingers examined, 15% operator experience, 13% reason for finger exclusion, 9% number of images, 8% quality check of the images and 3% time spent for the exam. Then, a three-round Delphi consensus on the selected items was completed by 80 participants internationally, from 31 countries located in Australia, Asia, Europe, North and South America. Some items reached the agreement at the second round (85 participants), and other items were suggested as important to consider in a future research agenda (e.g. temperature for acclimatization, the impact of smoking, allergies at the application of the oil to the nailbed, significance of pericapillary edema, methods of reporting hemorrhages, ramified and giant capillaries). The final agreement results are reported below:Conclusion:On the basis of the available literature the description of NVC methods was highly heterogeneous and individual published studies differed markedly. These practical suggestions developed using a Delphi process among international participants provide a guidance to improve and to standardize the NVC methodology in future clinical research studies.Disclosure of Interests:Francesca Ingegnoli: None declared, Tommaso Schioppo: None declared, Ariane Herrick: None declared, Alberto Sulli Grant/research support from: Laboratori Baldacci, Francesca Bartoli: None declared, Nicola Ughi: None declared, John Pauling: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Vanessa Smith Grant/research support from: The affiliated company received grants from Research Foundation - Flanders (FWO), Belgian Fund for Scientific Research in Rheumatic diseases (FWRO), Boehringer Ingelheim Pharma GmbH & Co and Janssen-Cilag NV, Consultant of: Boehringer-Ingelheim Pharma GmbH & Co, Speakers bureau: Actelion Pharmaceuticals Ltd, Boehringer-Ingelheim Pharma GmbH & Co and UCB Biopharma Sprl


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Elena Marcus ◽  
Paddy Stone ◽  
Anna-Maria Krooupa ◽  
Douglas Thorburn ◽  
Bella Vivat

Abstract Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.


Author(s):  
Loïc Dayon ◽  
Charlotte Macron ◽  
Sabine Lahrichi ◽  
Antonio Núñez Galindo ◽  
Michael Affolter

Healthcare ◽  
2021 ◽  
Vol 9 (3) ◽  
pp. 100555
Author(s):  
Mark P. Sendak ◽  
Michael Gao ◽  
William Ratliff ◽  
Krista Whalen ◽  
Marshall Nichols ◽  
...  

2019 ◽  
Vol 27 (3) ◽  
pp. 449-456
Author(s):  
James R Rogers ◽  
Hollis Mills ◽  
Lisa V Grossman ◽  
Andrew Goldstein ◽  
Chunhua Weng

Abstract Scientific commentaries are expected to play an important role in evidence appraisal, but it is unknown whether this expectation has been fulfilled. This study aims to better understand the role of scientific commentary in evidence appraisal. We queried PubMed for all clinical research articles with accompanying comments and extracted corresponding metadata. Five percent of clinical research studies (N = 130 629) received postpublication comments (N = 171 556), resulting in 178 882 comment–article pairings, with 90% published in the same journal. We obtained 5197 full-text comments for topic modeling and exploratory sentiment analysis. Topics were generally disease specific with only a few topics relevant to the appraisal of studies, which were highly prevalent in letters. Of a random sample of 518 full-text comments, 67% had a supportive tone. Based on our results, published commentary, with the exception of letters, most often highlight or endorse previous publications rather than serve as a prominent mechanism for critical appraisal.


Heart ◽  
2013 ◽  
Vol 99 (Suppl 3) ◽  
pp. A200.3-A201
Author(s):  
Shan HaiYan ◽  
Li Xue-lian ◽  
Yu Kai ◽  
Qi Hui-meng

1994 ◽  
Vol 264 ◽  
pp. 81-106 ◽  
Author(s):  
J. Verron ◽  
S. Valcke

The influence of stratification on the merging of like-sign vortices of equal intensity and shape is investigated by numerical simulations in a quasi-geostrophic, two-layer stratified model. Two different types of vortices are considered: vortices defined as circular patches of uniform potential vorticity in the upper layer but no PV anomaly in the lower layer (referred to as PVI vortices), and vortices defined as circular patches of uniform relative vorticity in the upper layer but no motion in the lower layer (referred to as RVI vortices). In particular, it is found that, in the RVI case, the merging behaviour depends strongly on the magnitude of the stratification (i.e. the ratio of internal Rossby radius and vortex radius). The critical point here appears to be whether or not the initial eddies have a deep flow signature in terms of PV.The specific phenomenon of scale-dependent merging observed is interpreted in terms of the competitive effects of hetonic interaction and vortex shape. In the case of weaker stratification, the baroclinic structure of the eddies can be seen as dominated by a mechanism of hetonic interaction in which bottom flow appears to counteract the tendency of surface eddies to merge. In the case of larger stratification, the eddy interaction mechanism is shown to be barotropically dominated, although interface deformation still determines the actual eddy vorticity profile during the initialization stage. Repulsion (hetonic) effect therefore oppose attraction (barotropic shape) effects in a competitive process dependent on the relationship between the original eddy lengthscale and the first internal Rossby radius.A concluding discussion considers the implications of such analysis for real situations, in the ocean or in the laboratory.


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