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2022 ◽  
Vol 7 ◽  
pp. 14
Author(s):  
Paul Schneider ◽  
Ben van Hout ◽  
Marike Heisen ◽  
John Brazier ◽  
Nancy Devlin

Introduction Standard valuation methods, such as TTO and DCE are inefficient. They require data from hundreds if not thousands of participants to generate value sets. Here, we present the Online elicitation of Personal Utility Functions (OPUF) tool; a new type of online survey for valuing EQ-5D-5L health states using more efficient, compositional elicitation methods, which even allow estimating value sets on the individual level. The aims of this study are to report on the development of the tool, and to test the feasibility of using it to obtain individual-level value sets for the EQ-5D-5L. Methods We applied an iterative design approach to adapt the PUF method, previously developed by Devlin et al., for use as a standalone online tool. Five rounds of qualitative interviews, and one quantitative pre-pilot were conducted to get feedback on the different tasks. After each round, the tool was refined and re-evaluated. The final version was piloted in a sample of 50 participants from the UK. A demo of the EQ-5D-5L OPUF survey is available at: https://eq5d5l.me Results On average, it took participants about seven minutes to complete the OPUF Tool. Based on the responses, we were able to construct a personal EQ-5D-5L value set for each of the 50 participants. These value sets predicted a participants' choices in a discrete choice experiment with an accuracy of 80%. Overall, the results revealed that health state preferences vary considerably on the individual-level. Nevertheless, we were able to estimate a group-level value set for all 50 participants with reasonable precision. Discussion We successfully piloted the OPUF Tool and showed that it can be used to derive a group-level as well as personal value sets for the EQ-5D-5L. Although the development of the online tool is still in an early stage, there are multiple potential avenues for further research.


2022 ◽  
Vol 6 ◽  
pp. 263
Author(s):  
Melati Nungsari ◽  
Chuah Hui Yin ◽  
Nicole Fong ◽  
Veena Pillai

Background: Globally, vulnerable populations have been disproportionately affected by the COVID-19 pandemic and subsequent responses, such as lockdown measures and mass vaccinations. Numerous ethical challenges have arisen at different levels, be it at the policy-making level or on the ground. For example, policymakers have to contain a highly contagious disease with high morbidity using scarce resources, while minimizing the medium- to long-term social and economic impacts induced by containment measures. This study explores the impact of COVID-19 on vulnerable populations in Malaysia by using an intersectional framework that accounts for overlapping forms of marginalization.   Methods: This study utilizes in-depth qualitative data obtained from 34 individuals and organizations to understand the impact of the COVID-19 outbreak on vulnerable populations in Malaysia. We utilize four principles of ethics to guide our coding and interpretation of the data – namely beneficence, non-maleficence, justice and autonomy. We utilize a frequency analysis to roughly understand the types of ethical issues that emerged. Using hermeneutic content analysis (HCA), we then explore how the principles interact with each other. Results: Through the frequently analysis, we found that although beneficence was very prevalent in our dataset, so was a significant amount of harm – as perpetuated through injustice, the removal or lack of autonomy and maleficence. We also unearthed a worrying landscape of harm and deep systemic issues associated with a lack of support for vulnerable households – further exacerbated during the pandemic. Conclusions: Policy recommendations for aid organizations and society to mitigate these ethical problems are presented, such as long overdue institutional reforms and stronger ethical practices rooted in human rights principles, which government agencies and aid providers can then use in the provision of aid to vulnerable populations.


2022 ◽  
Vol 5 ◽  
pp. 137
Author(s):  
Marius Rubo ◽  
Peter Czuppon

In their recent analysis, Hanlon et al. estimated the years of life lost (YLL) in people who have died with COVID-19 by following and expanding on the WHO standard approach. We welcome this research as an attempt to draw a more accurate picture of the mortality burden of this disease which has been involved in the deaths of more than 300,000 people worldwide as of May 2020. However, we argue that obtained YLL estimates (13 years for men and 11 years for women) are interpreted in a misleading way. Even with the presented efforts to control for the role of multimorbidity in COVID-19 deaths, these estimates cannot be interpreted to imply “how long someone who died from COVID-19 might otherwise have been expected to live”. By example we analyze the underlying problem which renders such an interpretation of YLL estimates impossible, and outline potential approaches to control for the problem.


2022 ◽  
Vol 6 ◽  
pp. 253
Author(s):  
Ciaran Grafton-Clarke ◽  
George Thornton ◽  
Benjamin Fidock ◽  
Gareth Archer ◽  
Rod Hose ◽  
...  

Background: The reproducibility of mitral regurgitation (MR) quantification by cardiovascular magnetic resonance (CMR) imaging using different software solutions remains unclear. This research aimed to investigate the reproducibility of MR quantification between two software solutions: MASS (version 2019 EXP, LUMC, Netherlands) and CAAS (version 5.2, Pie Medical Imaging). Methods: CMR data of 35 patients with MR (12 primary MR, 13 mitral valve repair/replacement, and ten secondary MR) was used. Four methods of MR volume quantification were studied, including two 4D-flow CMR methods (MRMVAV and MRJet) and two non-4D-flow techniques (MRStandard and MRLVRV). We conducted within-software and inter-software correlation and agreement analyses. Results: All methods demonstrated significant correlation between the two software solutions: MRStandard (r=0.92, p<0.001), MRLVRV (r=0.95, p<0.001), MRJet (r=0.86, p<0.001), and MRMVAV (r=0.91, p<0.001). Between CAAS and MASS, MRJet and MRMVAV, compared to each of the four methods, were the only methods not to be associated with significant bias. Conclusions: We conclude that 4D-flow CMR methods demonstrate equivalent reproducibility to non-4D-flow methods but greater levels of agreement between software solutions.


2022 ◽  
Vol 7 ◽  
pp. 13
Author(s):  
Robin Vincent ◽  
Bipin Adhikari ◽  
Claire Duddy ◽  
Emma Richardson ◽  
Geoff Wong ◽  
...  

Background: Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to ‘work’, and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped. Methods: To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature, we conducted a realist review of CE with malaria research – a theory driven approach to evidence synthesis. Results: We found that community engagement relies on the development of provisional ‘working relationships’ across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing ‘dominant health research paradigm context’, such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research. Conclusions: The development of working relationships contributes to greater acceptance and participation in research by local stakeholders, who are particularly interested in research related access to health care and other benefits. At the same time, such relationships may involve an accommodation of some ethically problematic characteristics of the dominant health research paradigm, and thereby reproduce this paradigm rather than challenge it with a different logic of collaborative partnership.


2022 ◽  
Vol 7 ◽  
pp. 12
Author(s):  
Ciarrah-Jane Barry ◽  
Christy Burden ◽  
Neil Davies ◽  
Venexia Walker

Large numbers of women take prescription and over-the-counter medications during pregnancy. However, there is very little definitive evidence about the potential effects of these drugs on the mothers and offspring. We will investigate the risks and benefits of continuing prescriptive drug use for chronic pre-existing maternal conditions such as diabetes, hypertension and thyroid related conditions throughout pregnancy. If left untreated, these conditions are established risk factors for adverse neonatal and maternal outcomes. However, some treatments for these conditions are associated with adverse neonatal outcomes. Our primary aims are twofold. Firstly, we aim to estimate the beneficial effect on the mother of continuing treatment during pregnancy. Second, we aim to determine whether there is an associated detrimental impact on the neonate of continuation of maternal treatment during pregnancy. To establish this evidence, we will investigate the relationship between maternal drug prescriptions and adverse and beneficial offspring outcomes to provide evidence to guide clinical decisions. We will conduct a hypothesis testing observational intergenerational cohort study using data from the UK Clinical Practice Research Datalink (CPRD). We will apply four statistical methods: multivariable adjusted regression, propensity score regression, instrumental variables analysis and negative control analysis. These methods should account for potential confounding when estimating the association between the drug exposure and maternal or neonatal outcome. In this protocol we describe the aims, motivation, study design, cohort and statistical analyses of our study to aid reproducibility and transparency within research.


2022 ◽  
Vol 7 ◽  
pp. 10
Author(s):  
Katey Warran ◽  
Alexandra Burton ◽  
Daisy Fancourt

Background: There is a scarcity of research concerning what it is about arts engagement that may activate causal mechanisms leading to effects on health and wellbeing outcomes: their active ingredients. Further, the limited studies that do exist have tended to be relevant to specific contexts and types of art forms. The aim of this study was to carry out a comprehensive mapping of potential active ingredients, construct a shared language, and propose a framework and toolkit to support the design, implementation, and evaluation of arts in health activities.  Methods: Drawing upon Rapid Appraisal techniques and collaborating with 64 participants, we engaged in a three-phase process: 1) a scoping review to inform the development of an initial framework; 2) consultation on the initial framework; and 3) analysis and construction of the INNATE framework.   Results: The study identified 139 potential active ingredients within the overarching categories of project, people, and contexts. Project components relate directly to the content of the arts activity itself, intrinsic to what the activity is. The people category denotes how people interact through engagement with the activity and who is involved in this interaction, including activity facilitation. Contexts relates to the activity setting comprising the aggregate of place(s), things, and surroundings. Aligning with complexity science, Ingredients may overlap, interconnect, or feed into one another to prompt mechanisms, and may not be experienced as distinct by participants.   Conclusions: Our mapping exercise is the most extensive to date. In relation to arts in health activities, the INNATE framework can support with: design and implementation, such as co-producing an intervention to meet the needs of a particular population; evaluation, such as facilitating the comparison of different interventions and their efficacy; and replication, scalability, and sustainability through enabling detailed reporting and specific articulation of what an arts in health activity entails.


2022 ◽  
Vol 7 ◽  
pp. 11
Author(s):  
Isabelle Williams ◽  
Sumeet Pandey ◽  
Wolfram Haller ◽  
Hein Q. Huynh ◽  
Alicia Chan ◽  
...  

Background:  Blockade of tumour necrosis factor (anti-TNF) is effective in patients with Crohn’s Disease but has been associated with infection risk and neurological complications such as demyelination. Niemann-Pick disease Type C1 (NPC1) is a lysosomal storage disorder presenting in childhood with neurological deterioration, liver damage and respiratory infections. Some NPC1 patients develop severe Crohn’s disease. Our objective was to investigate the safety and effectiveness of anti-TNF in NPC1 patients with Crohn’s disease. Methods: Retrospective data on phenotype and therapy response were collected in 2019-2020 for the time period 2014 to 2020 from patients in the UK, France, Germany and Canada with genetically confirmed NPC1 defects and intestinal inflammation. We investigated TNF secretion in peripheral blood mononuclear cells treated with NPC1 inhibitor in response to bacterial stimuli. Results: NPC1 inhibitor treated peripheral blood mononuclear cells (PBMCs) show significantly increased TNF production after lipopolysaccharide or bacterial challenge providing a rationale for anti-TNF therapy. We identified 4 NPC1 patients with Crohn’s disease (CD)-like intestinal inflammation treated using anti-TNF therapy (mean age of onset 8.1 years, mean treatment length 27.75 months, overall treatment period 9.25 patient years). Anti-TNF therapy was associated with reduced gastrointestinal symptoms with no apparent adverse neurological events. Therapy improved intestinal inflammation in 4 patients. Conclusions: Anti-TNF therapy appears safe in patients with NPC1 and is an effective treatment strategy for the management of intestinal inflammation in these patients.


2022 ◽  
Vol 7 ◽  
pp. 9
Author(s):  
Kathryn A. McGurk ◽  
Melpomeni Kasapi ◽  
James S. Ware

Background: Taurine, 2-aminoethanesulfonic acid, is an amino acid found in animal products. Taurine is produced for human consumption as a supplement and ingredient in beverages. Supplementation is a safe, inexpensive, and effective treatment for dilated cardiomyopathy (DCM) in domestic mammals, however it is currently unlicensed in Europe and the United States for human medical treatment. Recent genome-wide association studies of DCM have identified the locus of the taurine transporter (SLC6A6). To assess whether taurine supplementation may be a novel therapeutic option for DCM, we undertook a systematic review. Methods: Four electronic databases (PubMed, Cochrane Central Register, Web of Science, Biomed Central) were searched until 11/03/21. Included studies of human participants reported measured phenotypes or symptoms for cardiomyopathy, heart failure (HF), or altered left ventricle structure or function, administering taurine in any formulation, by any method. Non-English articles were excluded. Meta-analysis was completed in R software (version 3.6.0). The Newcastle-Ottawa Scale quality assessment score (NOQAS) tool was used to assess bias. Results: 285 articles were identified, of which eleven met our criteria for inclusion. Only one paper was deemed “high quality” using the NOQAS tool. Taurine supplementation varied across studies; by dose (500 mg to 6g per day), frequency (once to thrice daily), delivery method (tablet, capsule, drink, powder), and duration (2 to 48 weeks). Patient inclusion was all-cause HF patients with ejection fraction (EF) <50% and no study was specific to DCM. While improvements in diastolic and systolic function, exercise capacity, and haemodynamic parameters were described, only EF and stroke volume were measured in enough studies to complete a meta-analysis; the association was not significant with all-cause HF (P<0.05). No significant safety concerns were reported. Conclusions: A formal clinical trial is needed to address whether taurine supplementation is beneficial to the approximately 1/250 individuals with DCM in the population.


2022 ◽  
Vol 7 ◽  
pp. 8
Author(s):  
Dami A. Collier ◽  
Rachel Bousfield ◽  
Effrossyni Gkrania-Klotsas ◽  
Ravindra K. Gupta

Background: National lockdowns have led to significant interruption to children’s education globally. In the Autumn term in 2020, school absence in England and Wales was almost five times higher than the same period in 2019. Transmission of SARS-CoV-2 in schools and ongoing interruption to education remains a concern. However, evaluation of rapid point of care (POC) polymerase chain reaction (PCR) testing in British schools has not been undertaken. Methods: This is a survey of secondary schools in England that implemented PCR-based rapid POC testing. The study aims to measure the prevalence of SARS-CoV-2 infection in schools, to assess the impact of this testing on school attendance and closures, and to describe schools experiences with testing. All schools utilised the SAMBA II SARS-CoV-2 testing platform. Results: 12 fee-paying secondary schools in England were included. Between September 1st 2020 and December 16th 2020, 697 on site rapid POC PCR tests were performed and 6.7% of these were positive for SARS-CoV-2 infection. There were five outbreaks in three schools during this time which were contained. Seven groups of close contacts within the school known as bubbles had to quarantine but there were no school closures. 84% of those tested were absent from school for less than one day whilst awaiting their test result. This potentially saved between 1047 and 1570 days off school in those testing negative compared to the NHS PCR laboratory test. Schools reported a positive impact of having a rapid testing platform as it allowed them to function as fully as possible during this pandemic. Conclusions: Rapid POC PCR testing platforms should be widely available and utilised in school settings. Reliable positive tests will prevent outbreaks and uncontrolled spread of infection within school settings. Reliable negative test results will reassure students, parents and staff and prevent disruption to education.


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