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BMC Rheumatol ; 6(1): 80, 2022 Oct 15.
Article in English | MEDLINE | ID: covidwho-2079565

ABSTRACT

BACKGROUND: For many children and young people (CYP) with paediatric rheumatic conditions, glucocorticoid medications and their associated side-effects have a substantial impact on disease experience. Whilst there are physician-rated measures of glucocorticoid toxicity, no parallel patient reported measure has been developed to date for CYP with rheumatic disease. This manuscript describes a series of public patient involvement (PPI) events to inform the development of a future paediatric glucocorticoid-associated patient reported outcome measure (PROM). METHODS: One large group PPI event was advertised to CYP with experience of glucocorticoid medication use and their parents through clinicians, charities and existing PPI groups. This featured education on the team's research into glucocorticoid medication and interactive polls/structured discussion to help participants share their experiences. Further engagement was sought for PPI group work to co-develop future glucocorticoid studies, including development of a glucocorticoid associated PROM. Quantitative and qualitative feedback was collected from online questionnaires. The initiative was held virtually due to the Covid-19 pandemic. RESULTS: Nine families (n = 15) including 6 CYP joined the large group PPI event. Online pre-attendance and post-attendance questionnaires showed improvement in mean self-reported confidence [1 = not at all confident, 5 = very confident] in the following: what steroid medications are (pre = 3.9, post = 4.8), steroid side effects (pre = 3.8, post = 4.6), patient-reported outcome measures (pre = 2.0, post = 4.5), available research on steroids (pre = 2.2, post = 3.5). Five families (n = 7) were involved in a monthly PPI group who worked alongside the research team to identify priorities in glucocorticoid research, produce age-appropriate study materials, identify barriers to study participation (e.g. accessibility & convenience) and recommend appropriate modalities for dissemination. The participants found discussing shared experiences and learning about research to be the most enjoyable aspects of the initiative. CONCLUSIONS: This PPI initiative provided a valuable forum for families, including young children, to share their perspectives. Here, the authors explore the effective use of PPI in a virtual setting and provide a unique case study for the involvement of CYP in PROM development. The monthly PPI group also identified a need for the development of a new PROM related to glucocorticoid medication use and provided unique insights into how such a study could be structured.

2.
HemaSphere ; 6:4028-4029, 2022.
Article in English | EMBASE | ID: covidwho-2032122

ABSTRACT

Background: Chronic lymphocytic leukemia (CLL) and myelodysplastic syndromes (MDS) are two of the most frequent hematological malignancies. CLL and MDS are also considerably heterogeneous in terms of clinical course and response to treatment, ranging from relatively indolent to extremely aggressive. Thus, open issues abound regarding the impact of CLL and MDS and their treatment on patients' quality of life (QoL). Patient-reported outcomes (PROs) have been identified as an emerging paradigm, aiming to capture the patient's perspective onselfassessed health status. Obviously, these data are critical with regards to the evaluation of the treatment effects and the patients' QoL, while also enabling the positioning of the patient as a key stakeholder within the healthcare decision making process. Novel methodologies and eHealth approaches can be valuable for the adoption of the PRO paradigm in real-world settings as they can promote richer, less obtrusive and preemptive communication which could facilitate early recognition of potential symptoms of disease or treatment adverse effects (e.g., adverse drug reactions, lack of physical activity, worsening of QoL etc.). Aims: In this , we present the lessons learned thus far from the implementation of the MyPal project, a Horizon 2020 Research & Innovation Action aiming to foster palliative care for patients with CLL and MDS by leveraging the ePRO paradigm. Methods: MyPal aspires to empower patients and their caregivers to more accurately capture their symptoms/conditions, communicate them in a seamless and effective way to their healthcare providers (HCPs);and, ultimately, to foster action through advanced methods of identification of important deviations relevant to the patient's state and QoL. To this end, MyPal developed a technical platform including a mobile app for patients with CLL and MDS, collecting information via standardized questionnaires and other information sources (e.g., wearable sensors), also enabling spontaneous symptoms reporting, educational material provision, motivational messages, discussion guides, notifications etc. A data intensive web-based dashboard platform is also provided for healthcare professionals, providing real-time analytics, enabling a better view of collected PROs and other relevant information on patients' health status. Currently, a randomised clinical study is being conducted in 4 European countries to evaluate the proposed intervention and its potential impact on patients' QoL. Results: Based on this experience, a number of key issues have emerged: (a) while patients are generally positive about the use of eHealth, they are still reluctant about engaging in eHealth clinical studies;(b) digital literacy levels differ across different age groups as well as among different cultural contexts;(c) the COVID-19 pandemic seriously hindered patient recruitment due to the widely adopted recommendations for patients to avoid visits to hospitals unless absolutely necessary but (d) the COVID-19 pandemic also highlighted the potential benefits for HCPs of using eHealth tools in order to deliver patient care in a more decentralized and patient-centric fashion. Summary/Conclusion: In conclusion, MyPal is likely to provide important new evidence about how digital health systems can be used to improve QoL and facilitate better communication between patients with hematological malignancies and HCPs.

3.
27th International Conference on Parallel and Distributed Computing, Euro-Par 2021 ; 13098 LNCS:255-266, 2022.
Article in English | Scopus | ID: covidwho-1919678

ABSTRACT

This work has started from the necessity of improving the accuracy of numerical simulations of COVID-19 transmission. Coughing is one of the most effective ways to transmit SARS-CoV-2, the strain of coronavirus that causes COVID-19. Cough is a spontaneous reflex that helps to protect the lungs and airways from unwanted irritants and pathogens and it involves droplet expulsion at speeds close to 50 miles/h. Unfortunately, it’s also one of the most efficient ways to spread diseases, especially respiratory viruses that need host cells in which to reproduce. Computational Fluid Dynamics (CFD) are a powerful way to simulate droplets expelled by mouth and nose when people are coughing and/or sneezing. As with all numerical models, the models for coughing and sneezing introduce uncertainty through the selection of scales and parameters. Considering these uncertainties is essential for the acceptance of any numerical simulation. Numerical forecasting models often use Data Assimilation (DA) methods for uncertainty quantification in the medium to long-term analysis. DA is the approximation of the true state of some physical system at a given time by combining time-distributed observations with a dynamic model in an optimal way. DA incorporates observational data into a prediction model to improve numerically forecast results. In this paper, we develop a Variational Data Assimilation model to assimilate direct observation of the physical mechanisms of droplet formation at the exit of the mouth during coughing. Specifically, we use high-speed imaging, from prior research work, which directly examines the fluid fragmentation at the exit of the mouths of healthy subjects in a sneezing condition. We show the impact of the proposed approach in terms of accuracy with respect to CFD simulations. © 2022, Springer Nature Switzerland AG.

4.
EuropePMC; 2021.
Preprint in English | EuropePMC | ID: ppcovidwho-325279

ABSTRACT

Recent study reported that an aerosolised virus (COVID-19) can survive in the air for a few hours. It is highly possible that people get infected with the disease by breathing and contact with items contaminated by the aerosolised virus. However, the aerosolised virus transmission and trajectories in various meteorological environments remain unclear. This paper has investigated the movement of aerosolised viruses from a high concentration source across a dense urban area. The case study looks at the highly air polluted areas of London: University College Hospital (UCH) and King Cross and St Pancras International Station (KCSPI). We explored the spread and decay of COVID-19 released from the hospital and railway stations with the prescribed meteorological conditions. The study has three key findings: the primary result is that it is possible for the virus to travel from meters up to hundred meters from the source location. The secondary finding shows viruses released into the atmosphere from entry and exit points at KCSPI remain trapped within a small radial distance of < 50m. This strengthens the case for the use of face coverings to reduce the infection rate. The final finding shows that there are different levels of risk at various door locations for UCH, depending on which door is used there can be a higher concentration of COVID-19. Although our results are based on London, since the fundamental knowledge processes are the same, our study can be further extended to other locations (especially the highly air polluted areas) in the world.

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