scholarly journals A survey to understand the feelings towards and impact of COVID-19 on the households of juvenile dermato myositis patients from a parent or carer perspective

2021 ◽  
Vol 5 (3) ◽  
Author(s):  
Meredyth Grace Llewellyn Wilkinson ◽  
Wing Wu ◽  
Kathryn O’Brien ◽  
Claire T Deakin ◽  
Lucy R Wedderburn ◽  
...  
Keyword(s):  
Chronic Disease ◽  
Clinical Care ◽  
Young Person ◽  
Electronic Questionnaire ◽  
Blood Tests ◽  
Difficult Time ◽  
Patient Groups ◽  
The Uk ◽  
The Impact ◽  
Research Studies

Abstract Objectives This aim of this study was to gain a better understanding of how parents and carers feel about the effects and impact of the coronavirus disease 2019 (COVID-19) pandemic lockdown and how this impacted upon their child/young person with JDM. Method We approached 139 participants from the JDM Cohort Biomarker Study (JDCBS), with specific consent to approach electronically for research studies. A secure electronic questionnaire with study introduction was sent to participants for their parents and carers around the UK to complete. It consisted of 20 questions about the impact of the pandemic on their child or young person’s clinical care. Data were analysed quantitatively and qualitatively. Results There were 76 (55%) responses to the survey. More than 50% of participants were actively being treated for their JDM at the point of survey completion as recorded by their parent or carer. More than 40% attested to disrupted treatment owing to COVID-19. The biggest impact upon clinical care was cancellation of appointments, initiating virtual appointments and extension of time between blood tests. Parents and carers expressed their own feelings of worry, concern and anxiety, but also those of their child or young person. Conclusion Families who have a child or young person with JDM have been affected by COVID-19. Qualitative comments highlight that it has been a very difficult time. Further investigation is required into this area and could be compared with research on the effects of COVID-19 on other patient groups with chronic disease.

scholarly journals General practitioners and emergency departments (GPED)—efficient models of care: a mixed-methods study protocol

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e024012
Author(s):  
Katherine Morton ◽  
Sarah Voss ◽  
Joy Adamson ◽  
Helen Baxter ◽  
Karen Bloor ◽  
...  
Keyword(s):  
Emergency Department ◽  
Case Studies ◽  
General Practitioners ◽  
Emergency Departments ◽  
Quantitative Methods ◽  
Public Involvement ◽  
Clinical Care ◽  
Urgent Care ◽  
The Uk ◽  
The Impact

IntroductionPressure continues to grow on emergency departments in the UK and throughout the world, with declining performance and adverse effects on patient outcome, safety and experience. One proposed solution is to locate general practitioners to work in or alongside the emergency department (GPED). Several GPED models have been introduced, however, evidence of effectiveness is weak. This study aims to evaluate the impact of GPED on patient care, the primary care and acute hospital team and the wider urgent care system.Methods and analysisThe study will be divided into three work packages (WPs). WP-A; Mapping and Taxonomy: mapping, description and classification of current models of GPED in all emergency departments in England and interviews with key informants to examine the hypotheses that underpin GPED. WP-B; Quantitative Analysis of National Data: measurement of the effectiveness, costs and consequences of the GPED models identified in WP-A, compared with a no-GPED model, using retrospective analysis of Hospital Episode Statistics Data. WP-C; Case Studies: detailed case studies of different GPED models using a mixture of qualitative and quantitative methods including: non-participant observation of clinical care, semistructured interviews with staff, patients and carers; workforce surveys with emergency department staff and analysis of available local routinely collected hospital data. Prospective case study sites will be identified by completing telephone interviews with sites awarded capital funding by the UK government to implement GPED initiatives. The study has a strong patient and public involvement group that has contributed to study design and materials, and which will be closely involved in data interpretation and dissemination.Ethics and disseminationThe study has been approved by the National Health Service East Midlands—Leicester South Research Ethics Committee: 17/EM/0312. The results of the study will be disseminated through peer-reviewed journals, conferences and a planned programme of knowledge mobilisation.Trial registration numberISRCTN51780222.

scholarly journals Changes in hospital prescribing activity at a specialist children’s hospital during the COVID-19 pandemic - an observational study

2020 ◽  
Author(s):  
Emma Vestesson ◽  
Carlos Alonso ◽  
John Booth ◽  
Neil J Sebire ◽  
Adam Steventon ◽  
...  
Keyword(s):  
Observational Study ◽  
Paediatric Hospital ◽  
Children's Hospital ◽  
Overnight Stay ◽  
Specialist Services ◽  
Hospital Bed ◽  
Children’S Hospital ◽  
Patient Groups ◽  
The Uk ◽  
The Impact

AbstractObjectiveTo compare hospital activity, patient casemix and medication prescribing and administration before and during the COVID-19 emergency.DesignRetrospective observational studySettingA specialist children’s hospital in the UKPatientsInpatients aged 25 and younger treated at a specialist children’s hospital between 29 April 2019 and 6 September 2020ResultsThere were 21,471 day cases and inpatients treated during the 16 month study period. Day cases (no overnight stay) dropped by around 37% per week. Both admissions and discharges for inpatients (at least one overnight stay) decreased leading to a small reduction in hospital bed days but no reduction in hospital bed nights. The effect on hospital activity on different patient groups varied substantially with some groups such as medical oncology day cases increasing by 13%. As a result, the patient case mix in the hospital was very different during the pandemic. Overall weekly medication administrations decreased for day cases and inpatients, but weekly medication administrations per bed day increased by 10% for day cases and 6% for inpatients.ConclusionsDespite not being badly affected by the disease itself, specialist paediatric hospital services have been greatly affected by the pandemic. The average number of medications per inpatient bed day increased, likely reflecting changes to the patient population, with only those children with severe conditions being treated during the pandemic. These data demonstrate the complex pattern of implications on specialist services and provide evidence for planning the impact of future emergencies and resolution strategies.

Four-year overview of enrollment and participation in research studies conducted at the Prostate Cancer Supportive Care (PCSC) Program.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 39-39
Author(s):  
Eugenia Wu ◽  
Olga Arsovska ◽  
Monita Sundar ◽  
Michaela Vivar ◽  
Christopher Pang ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Supportive Care ◽  
Clinical Care ◽  
Care Program ◽  
Number Of Patients ◽  
Exercise Physiologist ◽  
Study Team ◽  
The Impact ◽  
Registered Dieticians ◽  
Research Studies

39 Background: The mission of the Prostate Cancer Supportive Care (PCSC) Program at the Vancouver Prostate Centre (VPC) is to provide clinical care focused on the needs of prostate cancer patients and partners. It is comprised of six modules that are administered by medical professionals in urology, radiation oncology, sexual health nurses, registered dieticians, certified exercise physiologist, male pelvic floor physiotherapists, and couples’ counselling. Incorporation of research into daily care provides evidence for these practices, identifies areas for improvement, and tests new approaches. In order to evaluate the interface between the clinical and research programs, we reviewed the metrics of our PCSC program. Methods: Research studies were grouped by type. Screening and enrollment logs were reviewed to tally the total number of patients approached versus enrolled. Reasons for non-participation based on data in our enrollment logs were categorized. Results: Between Feb 2015 and Mar 2019, PCSC Program participated in 22 research studies: 9 therapeutic or lifestyle intervention studies (3 RCTs), 3 observational studies, 2 registries, 1 survey, 1 genetic study, 1 databank , 2 collaborative programmatic studies, 3 “permission to contact” studies (referral to the study team only). 8 of the 22 studies included recruitment of dyads (both patient and their partner or caregiver). Of 1080 consenting patients, 760 (70.4%) enrolled in 1 study, 210 (19.4%) in 2 studies, and 110 (10.2%) in > 3 studies. 583 patients did not consent due to lack of interest (43.7%), not available (21.1%), time constraints (10.3%), travel distance (6.7%). Conclusions: Our data show that a subspecialty supportive care program can provide a rich environment in which to conduct clinical research. We believe that the integration of the research program and personnel into the clinical setting is key to our success. Current on-going studies are evaluating the impact of and patient satisfaction with all PCSC modules.

scholarly journals All the right moves: why in utero transfer is both important for the baby and difficult to achieve and new strategies for change

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 979
Author(s):  
Helena Watson ◽  
James McLaren ◽  
Naomi Carlisle ◽  
Nandiran Ratnavel ◽  
Tim Watts ◽  
...  
Keyword(s):  
Preterm Birth ◽  
Transfer Process ◽  
Assisted Reproductive Technologies ◽  
Clinical Care ◽  
Multiple Pregnancy ◽  
Reproductive Technologies ◽  
In Utero ◽  
The Uk ◽  
The Right ◽  
The Impact

The best way to ensure that preterm infants benefit from relevant neonatal expertise as soon as they are born is to transfer the mother and baby to an appropriately specialised neonatal facility before birth (“in utero”). This review explores the evidence surrounding the importance of being born in the right unit, the advantages of in utero transfers compared to ex utero transfers, and how to accurately assess which women are at most risk of delivering early and the challenges of in utero transfers. Accurate identification of the women most at risk of preterm birth is key to prioritising who to transfer antenatally, but the administrative burden and pathway variation of in utero transfer in the UK are likely to compromise optimal clinical care. Women reported the impact that in utero transfers have on them, including the emotional and financial burdens of being transferred and the anxiety surrounding domestic and logistical concerns related to being away from home. The final section of the review explores new approaches to reforming the in utero transfer process, including learning from outside the UK and changing policy and guidelines. Examples of collaborative regional guidance include the recent Pan-London guidance on in utero transfers. Reforming the transfer process can also be aided through technology, such as utilising the CotFinder app. In utero transfer is an unavoidable aspect of maternity and neonatal care, and the burden will increase if preterm birth rates continue to rise in association with increased rates of multiple pregnancy, advancing maternal age, assisted reproductive technologies, and obstetric interventions. As funding and capacity pressures on health services increase because of the COVID-19 pandemic, better prioritisation and sustained multi-disciplinary commitment are essential to maximise better outcomes for babies born too soon.

scholarly journals A phenomenological exploration of the lived experiences of orthopaedic surgeons during the COVID-19 pandemic

2021 ◽  
Vol 103 (5) ◽  
pp. 248-253
Author(s):  
SJ Calder ◽  
L Lawson ◽  
PR Calder
Keyword(s):  
Peer Support ◽  
Well Being ◽  
Phenomenological Approach ◽  
Trauma Centre ◽  
Structured Interviews ◽  
Orthopaedic Surgeons ◽  
The North ◽  
Difficult Time ◽  
The Uk ◽  
The Impact

INTRODUCTION Following the UK government ordering a hard stop of all elective operating within the NHS in March of 2020, the Royal National Orthopaedic Hospital was converted into a trauma centre serving the North Central London region and neighbouring trusts. The aim of this study was to explore the impact on the surgeons’ well-being and performance during this stressful time. METHODOLOGY A descriptive phenomenological approach was used for this study. Eight participants were purposefully selected and informed consent was given by each participant. Semi-structured interviews were undertaken using open questions and probes to stimulate discussion. Colaizzi’s 7 step framework for thematic analysis was used to identify codes and common themes. RESULTS Five main themes were identified. These included: the impact of fear, fear of using personal protective equipment, stress relating to leadership and professionalism of the surgeon, the need for peer support and response to change. CONCLUSIONS This study confirms common areas of concern and anxiety raised by all the surgeons interviewed. The participants developed several coping strategies, including peer support, which has previously been identified as the most important approach in dealing with difficult circumstances. Stress relating to the need for surgical leadership, demonstrated by the rapid organisation of the hospital from a purely elective site to a trauma centre is highlighted. What was apparent from the narratives of the participants was that despite the stress and anxiety felt by them, they remained humble and proud to remain as orthopaedic surgeons treating patients during this difficult time.

scholarly journals Cross-sectional analysis of UK research studies in 2015: results from a scoping project with the UK Health Research Authority

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e022340 ◽  
Author(s):  
Tim Clark ◽  
Richard H Wicentowski ◽  
Matthew R Sydes
Keyword(s):  
Health Research ◽  
Clinical Studies ◽  
Public Involvement ◽  
Secondary Outcome ◽  
Ethical Review ◽  
Free Text ◽  
Research Activities ◽  
The Uk ◽  
The Impact ◽  
Research Studies

ObjectivesTo determine whether data on research studies held by the UK Health Research Authority (HRA) could be summarised automatically with minimal manual intervention. There are numerous initiatives to reduce research waste by improving the design, conduct, analysis and reporting of clinical studies. However, quantitative data on the characteristics of clinical studies and the impact of the various initiatives are limited.DesignFeasibility study, using 1 year of data.SettingWe worked with the HRA on a pilot study using research applications submitted for UK-wide ethical review. We extracted into a single dataset, information held in anonymised XML files by the Integrated Research Application System (IRAS) and the HRA Assessment Review Portal (HARP). Research applications from 2014 to 2016 were provided. We used standard text extraction methods to assess information held in free-text fields. We use simple, descriptive methods to summarise the research activities that we extracted.ParticipantsNot applicable—records-based studyInterventionsNot applicable.Primary and secondary outcome measuresFeasibility of extraction and processing.ResultsWe successfully imported 1775 non-duplicate research applications from the XML files into a single database. Of these, 963 were randomised controlled trials and 812 were other studies. Most studies received a favourable opinion. There was limited patient and public involvement in the studies. Most, but not all, studies were planned for publication of results. Novel study designs (eg, adaptive and Bayesian designs) were infrequently reported.ConclusionsWe have demonstrated that the data submitted from IRAS to the HRA and its HARP system are accessible and can be queried for information. We strongly encourage the development of fully resourced collaborative projects to further this work. This would aid understanding of how study characteristics change over time and across therapeutic areas, as well as the progress of initiatives to improve the quality and relevance of research studies.

scholarly journals The ethics of genomic medicine: redefining values and norms in the UK and France

2021 ◽  
Author(s):  
Marie Gaille ◽  
◽  
Ruth Horn
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Social Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Public Healthcare ◽  
Individual Rights ◽  
The Social ◽  
The Uk ◽  
The Impact

AbstractThis paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context of genomic medicine. This paper leads to three key observations: (1) despite each country’s strategy being at a different stage of implementation, the two countries face similar ethical issues; (2) each country tries to solve these issues by (re-)defining individual rights and collective duties in its own way; (3) the social contract presents a useful tool to analyse the ways the UK and France address the ethical challenges raised by genomics. This overview lays the groundwork for future in-depth comparison, and drive collaborative research, between the UK and France.

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