Search results
Found 19024 matches for
A blog by Dr Gurpreet Singh Kalra and Shawn D. Mathis, members of cohort 1 of the MSc in Global Healthcare Leadership
Evaluating video and hybrid group consultations in general practice: mixed-methods, participatory study protocol (TOGETHER 2)
Background: General practice is facing an unprecedented challenge in managing the consequences of the pandemic. In the midst of a policy drive to balance remote and in-person service provision, substantial workload pressures remain, together with increasing prevalence of long-term conditions, and declining staff numbers and morale. To address these challenges, some practices in the UK have been delivering video and hybrid group consultations (VHGCs) providing clinical care to multiple patients at the same time. Despite positive initial findings and enthusiasm, there are still gaps in our understanding of the influence VHGCs have on patient experience, healthcare utilisation, quality, safety, equity and affordability. Objectives: To generate an in-depth understanding of VHGCs for chronic conditions in general practice, surface assumptions and sociotechnical dynamics, inform practice and extend theorisation. Methods: Mixed-methods, multi-site research study using co-design and participatory methods, from qualitative, quantitative and cost-related perspectives. WP1 includes a national, cross-sectional survey on VHGC provision across the UK. In WP2 we will engage patients and general practice staff in co-design workshops to develop VHGC models with emphasis on digital inclusion and equity. In WP3 we will carry out a mixed-methods process evaluation in up to 10 GP practices across England (5 sites already running VHGCs and 5 comparison sites). Qualitative methods will include interviews, focus groups and ethnographic observation to examine the experiences of patients, carers, clinical and non-clinical NHS staff, commissioners and policy-makers. Quantitative methods will examine the impact of VHGCs on healthcare utilisation in primary and secondary care, patient satisfaction, engagement and activation. We will also assess value for money of group and individual care models from a health economics perspective. Conclusions: We aim to develop transferable learning on sociotechnical change in healthcare delivery, using VHGCs as an exemplar of technology-supported innovation. Findings will also inform the design of a future study.
Student perspectives on school-based social workers: a mixed-methods study
Purpose: School social work, in various forms, is well established internationally and has a growing evidence base. Yet existing research focuses on professional perspectives rather than those of students. This study aims to fill this gap by exploring secondary school student perspectives of having social workers in schools (SWIS). It was undertaken in England as part of the SWIS trial, which tested whether secondary school-based social workers could improve child safety and well-being, identify issues more quickly and reduce the need for statutory services. Design/methodology/approach: A mixed-methods approach comprised a survey (n = 1,998 students) and interviews (n = 27 students). Surveys included questions on awareness, understanding, interaction with and attitudes towards the school-based social workers. Interviews involved a Q-sort activity followed by semi-structured questions on general attitudes and experiences. The Q-sort characterised prominent perspectives and how many students subscribed to them. Findings: Students were broadly positive about having a social worker in their school in the survey and interviews. Two prominent perspectives on SWIS were identified. The first (n = 17) was defined by students feeling positively overall and strongly agreeing that they trusted the social worker. The second (n = 4) was mixed in sentiment, defined by some anxiety about working with the social worker. In interviews, students relayed that social workers were easily accessible, offered emotional support and acted as a bridge between school and home. Originality/value: To the best of the authors’ knowledge, this study is the first to quantify student perspectives on having social workers at school and evidence attitudes and experiences about school-based social work as practiced during the SWIS trial.
Lessons to be learned from test evaluations during the COVID-19 pandemic: RSS Working Group’s Report on Diagnostic Tests
The coronavirus disease (Covid-19) pandemic raised challenges for everyday life. Development of new diagnostic tests was necessary, but under such enormous pressure risking inadequate evaluation. Against a background of concern about standards applied to the evaluation of in vitro diagnostic tests (IVDs), clear statistical thinking was needed on the principles of diagnostic testing in general, and their application in a pandemic. Therefore, in July 2020, the Royal Statistical Society convened a Working Group of six biostatisticians to review the statistical evidence needed to ensure the performance of new tests, especially IVDs for infectious diseases—for regulators, decision-makers, and the public. The Working Group’s review was undertaken when the Covid-19 pandemic shone an unforgiving light on current processes for evaluating and regulating IVDs for infectious diseases. The report’s findings apply more broadly than to the pandemic and IVDs, to diagnostic test evaluations in general. A section of the report focussed on lessons learned during the pandemic and aimed to contribute to the UK Covid-19 Inquiry’s examination of the response to, and impact of, the Covid-19 pandemic to learn lessons for the future. The review made 22 recommendations on what matters for study design, transparency, and regulation.
Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?
INTRODUCTION: Organised by the 'Qualitative Long Covid Network', a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed. METHODS: Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study. RESULTS: The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified. CONCLUSION: A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision-makers. We argue that there needs to be a strong investment in research and evidence-based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals. PATIENT AND PUBLIC (PPI) CONTRIBUTION: Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network 'Long Covid and Health Inequalities' workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co-authors of this article.
Patterns of medicine use in the year prior to death by suicide: an Australian population-based case series study
Background: Prescribed medicines are commonly used to treat mental health conditions but are also often implicated in suicide death by poisoning. This was a descriptive study quantifying changes in dispensing and initiation of antidepressants, benzodiazepines, and antipsychotics in the year prior to death by suicide. Methods: In this Australian population-based case series, we used national coronial data linked with dispensing claims for all people ≥10 years who died by suicide (2013–2019). Our primary outcome was change in aggregate weekly medicine dispensing the year before death, quantified using piecewise linear regression stratified by cause of death (medicine poisoning vs other causes). Our secondary outcome was change in medicine initiation rates. This study was performed between June 2021 and July 2023. Findings: Our study included 14,207 people (24% female, median age 44 years). In the year prior to death, we observed higher rates of nervous system medicine use in people who died by medicine poisoning compared with those that did not: antidepressants (62.4% vs 42.9%), benzodiazepines (51.4% vs 29.0%), antipsychotics (25.6% vs 17.1%), opioids (43.8% vs 23.4%). For benzodiazepines, among people who died by medicine poisoning the slope (rate of increase) changed from 0.18 (95% CI −0.01, 0.37) to 4.12 (95% CI 0.98, 7.26) dispensings per 1000 people per week at 8 weeks prior to death. Among people who died of other causes, the slope changed from 0.18 (95% CI 0.14, 0.22) to 2.41 (95% CI 1.90, 2.91) also at 8 weeks prior to death. For antidepressants, among people who died of medicine poisoning we observed no change in the slope. Among people who died of other causes, the slope increased from 0.18 (95% CI 0.09, 0.28) to 1.68 (95% CI 1.20, 2.15) at 14 weeks prior to death. Interpretation: Dispensing of antidepressants and benzodiazepines increased more rapidly closer to date of death, regardless of medicine involvement in death. This suggests these changes may reflect worsening symptoms or increased help seeking and that the method of death by suicide may be due to greater means access. However, findings need to be interpreted with caution as our analyses were performed on aggregate data and may not reflect person-level changes. Funding: This study is funded by a grant from theAustralian National Health and Medical Research Council (NHMRC) and theTranslational Australian Clinical Toxicology Research (TACT) Group.
Weight trends amongst adults with diabetes or hypertension during the COVID-19 pandemic: an observational study using OpenSAFELY.
BACKGROUND: COVID-19 pandemic restrictions may have influenced behaviours related to weight. AIMS: To describe patterns of weight change amongst adults living in England with Type 2 Diabetes (T2D) and/or hypertension during the COVID-19 pandemic. Design and Setting With the approval of NHS England, we conducted an observational cohort study using the routinely collected health data of approximately 40% of adults living in England, accessed through the OpenSAFELY service inside TPP. METHOD: We investigated clinical and sociodemographic characteristics associated with rapid weight gain (>0·5kg/m2/year) using multivariable logistic regression. RESULTS: We extracted data on adults with T2D (n=1,231,455, 44% female, 76% white British) or hypertension (n=3,558,405, 50% female, 84% white British). Adults with T2D lost weight overall (median δ = -0.1kg/m2/year [IQR: -0.7, 0.4]), however, rapid weight gain was common (20.7%) and associated with sex (male vs female: aOR 0.78[95%CI 0.77, 0.79]); age, older age reduced odds (e.g. 60-69-year-olds vs 18-29-year-olds: aOR 0.66[0.61, 0.71]); deprivation, (least-deprived-IMD vs most-deprived-IMD: aOR 0.87[0.85, 0.89]); white ethnicity (Black vs White: aOR 0.95[0.92, 0.98]); mental health conditions (e.g. depression: aOR 1.13 [1.12, 1.15]); and diabetes treatment (non-insulin treatment vs no pharmacological treatment: aOR 0.68[0.67, 0.69]). Adults with hypertension maintained stable weight overall (median δ = 0.0kg/m2/year [ -0.6, 0.5]), however, rapid weight gain was common (24.7%) and associated with similar characteristics as in T2D. CONCLUSION: Amongst adults living in England with T2D and/or hypertension, rapid pandemic weight gain was more common amongst females, younger adults, those living in more deprived areas, and those with mental health condition.
The cost-effectiveness and cost-consequences of a school-based social worker intervention: A within-trial economic evaluation
Schools are a significant source of referrals to Children's Social Care (CSC) services. A within-trial economic evaluation estimated the cost-effectiveness of embedding social workers in schools (SWIS) in England compared to usual practice. Two hundred and sixty-eight schools comprising 277,888 students were randomised. The primary outcome of the trial was section 47 enquiries (i.e. child protection referrals to CSC services). The economic evaluation estimated the incremental cost-effectiveness of SWIS in reducing section 47 enquiries. Micro-costing approaches assessed the cost of the social worker intervention and addressed variability in key unit costs. Mean differences in costs and outcomes were estimated, with bootstrap 95% confidence intervals and scaling to incidence rate ratios per 1000 students per year. No statistically significant differences between trial arms were identified for any outcomes, costs or cost-effectiveness over a 23-month follow-up. The probability that SWIS is cost-effective was estimated for a range of willingness to pay values. At threshold values of £1000, £10,000 and £20,000, the probabilities for cost-effectiveness were estimated as 1.3%, 1.1% and 6.1%, respectively. This means SWIS had a low probability of being cost-effective.
Low-dose spironolactone and cardiovascular outcomes in moderate stage chronic kidney disease: a randomized controlled trial
Chronic kidney disease (CKD) is associated with a substantial risk of progression to end-stage renal disease and vascular events. The nonsteroidal mineralocorticoid receptor antagonist (MRA), finerenone, offers cardiorenal protection for people with CKD and diabetes, but there is uncertainty if the steroidal MRA, spironolactone, provides the same protection. In this prospective, randomized, open, blinded endpoint trial, we assessed the effectiveness of 25 mg spironolactone in addition to usual care or usual care alone for reducing cardiovascular outcomes in stage 3b CKD among an older community cohort (mean age = 74.8 years and s.d. = 8.1). We recruited 1,434 adults from English primary care, of whom 1,372 (96%) were included in the primary analysis. The primary outcome was time from randomization until the first occurrence of death, hospitalization for heart disease, stroke, heart failure, transient ischemic attack or peripheral arterial disease, or first onset of any condition listed not present at baseline. Across 3 years of follow-up, the primary endpoint occurred in 113 of 677 participants randomized to spironolactone (16.7%) and 111 of 695 participants randomized to usual care (16.0%) with no significant difference between groups (hazard ratio = 1.05, 95% confidence interval: 0.81–1.37). Two-thirds of participants randomized to spironolactone stopped treatment within 6 months, predominantly because they met prespecified safety stop criteria. The most common reason for stopping spironolactone was a decrease in the estimated glomerular filtration rate that met prespecified stop criteria (n = 239, 35.4%), followed by participants being withdrawn due to treatment side effects (n = 128, 18.9%) and hyperkalemia (n = 54, 8.0%). In conclusion, we found that spironolactone was frequently discontinued due to safety concerns, with no evidence that it reduced cardiovascular outcomes in people with stage 3b CKD. Spironolactone should not be used for people with stage 3b CKD without another explicit treatment indication. ClinicalTrials.gov registration: ISRCTN44522369.
Pluralising Cancer
This Review essay seeks to interrogate the vast category of ‘cancer’. Taken together, the three books explored here pluralise cancer, locating it not just in organs and bodies but also in time and space—in the social, material, and historical specificities in which people become patients. These ethnographies break apart the notion of ‘the C word’, showing the diverse experiences and illnesses that are gathered under this banner. Cancers emerge as both unavoidably fatal and potentially controllable in different settings. At points, however, these anthropological texts may also reinforce the unity of a singular cancer. This essay suggests that clarity may be gained by more explicitly treating this notion as an object of their ethnography, historicising and theorising it. Wholeheartedly interrogating what is variously meant by the word cancer may have benefits, not only for improving the precision of anthropological work, but also for addressing the widespread fear that the term and its fairly uniform associations with suffering and death inspire.
Ambivalent Speculations: Learning to Live with Barrett's Esophagus in the UK Using Facebook Support Groups.
Drawing on fieldwork in Facebook support groups, in this article I explore how people, now patients, learnt to live with Barrett's esophagus, a risk state or "precancer" for a type of esophageal cancer. This diagnosis brought the possibility of both facing and averting cancerous futures into the present. Far from passive recipients, members worked to foreground speculations of "wanted futures" in which prompt surveillance successfully prevented cancer deaths, transforming cancer risk into an opportunity for hope. Speculation here was an ambivalent and active process, involving not only the "observation of potentiality," but the opening up and foreclosing of both desirable and undesirable potentialities.
'This has given me the peace of mind I needed': ethnographic insights into Barrett's oesophagus screening using the capsule sponge test
In 2021 and 2022, researchers carried out an implementation trial that considered how the capsule sponge test might be used to screen for Barrett's oesophagus using a mobile clinic in East Anglia. This paper offers insights from 15 months of ethnographic fieldwork studying the trial. It aims to highlight the value of the test in offering reassurance to worried patients, particularly to those with a family history of oesophageal adenocarcinoma. It also considers the variety of aims people held for the capsule sponge test, including the hope that it would address their symptoms of acid reflux, and the conflict that sometimes emerged as a result. The second half of the paper uses fieldwork carried out in virtual support groups for people with Barrett's oesophagus to explore experiences postdiagnosis, which sometimes were defined by fear of future cancers. It describes notable differences between the care offered to people with morphological risk conditions like Barrett's oesophagus and the care given to those with genetic risk conditions, including the provision of genetic counselling. More broadly, the paper highlights a tension between patient-centred and risk-centred medicine that is likely to grow as healthcare services continue to shift towards preventative approaches.
Patient buy-in to social prescribing through link workers as part of person-centred care: a realist evaluation
Background Social prescribing link workers have become part of primary health care in recent years. They help patients to recognise non-medical factors affecting their health and identify sources of support, often in the voluntary, community and social enterprise sector. They form part of wider work to strengthen person-centred care, which actively seeks to engage individuals in decision-making about their health, taking into account their medical, social, psychological, financial and spiritual circumstances. Objective To understand how buy-in to social prescribing and the link worker role is established for a patient, and how this relates to person-centred care. Design A realist evaluation. Setting Patients engaging with link workers in seven different parts of England were involved. Methods As part of data collection, we observed link workers interacting with 35 patients. We also interviewed 61 patients and re-interviewed 41 of them 9–12 months later. Data were coded and developed into context–mechanism–outcome configurations, which were used to produce a programme theory. Results Data highlighted how patients might be uncertain about the link worker role but agree to a referral as they sought assistance with their non-medical issues. Patients talked about experiencing a sense of hope through the trust they developed in a link worker. This trust was established through the communication skills and knowledge demonstrated by a link worker, and by their ability to act as an anchor point when required – a reliable, consistent source of support to whom patients could offload. The link worker role also involved connecting patients to external support, which called for sensitivity around how ready someone was to move forward; this was shaped by a patient’s motivation but also their capacity to make changes given other demands in their life. Connecting patients to external support could be affected by structural factors outside the link workers’ control (e.g. housing options or employment opportunities). Limitations We did not interview patients who had rejected the offer of social prescribing, and most had a positive view of meeting with a link worker. Conclusions Person-centred care is engendered by link workers through their skills, knowledge and ability to respond to the individual readiness of patients to engage with external support. It can be curtailed by structural factors outside link workers’ sphere of control, such as access to housing or caring responsibilities of patients. This can hinder patients’ ability to ‘connect to’, leaving link workers to continue ‘connecting with’ patients as they act as an anchor point. Future work Exploration is required of factors affecting patients who interact with a link worker but do not access external support. Longitudinal work with a cohort of patients, speaking to them on a regular basis, may provide further understanding in this respect. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247.
Exploring the interface between adolescent dysmenorrhoea and endometriosis: A protocol for a cohort and nested case-control study within the QResearch Database
Introduction Dysmenorrhoea affects up to 70%-91% of adolescents who menstruate, with approximately one-third experiencing severe symptoms with impacts on education, work and leisure. Dysmenorrhoea can occur without identifiable pathology, but can indicate underlying conditions, including congenital genital tract anomalies or endometriosis. There is a need for evidence about the management and incidence of dysmenorrhoea in primary care, the impact of treatments in adolescence on long-term outcomes and when to consider the possibility of endometriosis in adolescence. Methods and analysis This study aims to improve the evidence base for adolescents presenting to primary care with dysmenorrhoea. It comprises three interlinked studies. Using the QResearch Database, the study population includes all female at birth participants aged 10-19 years any time between 1 January 2000 and 30 June 2021. We will undertake (1) a descriptive study documenting the prevalence of coded dysmenorrhoea in primary care, stratified by demographic variables, reported using descriptive statistics; (2) a prospective open cohort study following an index cohort of all adolescents recorded as attending primary care with dysmenorrhoea and a comparator cohort of five times as many who have not, to determine the HR for a diagnosis of endometriosis, adenomyosis, ongoing menstrual pain or subfertility (considered singly and in combination) anytime during the study period; and (3) a nested case-control study for adolescents diagnosed with endometriosis, using conditional logistic regression, to determine the OR for symptom(s) preceding this diagnosis. Ethics and dissemination The project has been independently peer reviewed and received ethics approval from the QResearch Scientific Board (reference OX46 under REC 18/EM/0400). In addition to publication in peer-reviewed academic journals, we will use the combined findings to generate a resource and infographic to support shared decision-making about dysmenorrhoea in community health settings. Additionally, the findings will be used to inform a subsequent qualitative study, exploring adolescents' experiences of menstrual pain.
Exploring Elinor Ostrom's principles for collaborative group working within a user-led project: lessons from a collaboration between researchers and a user-led organisation
Background: Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom’s Nobel prize winning analysis of common pool resource management—specifically eight principles to enhance collaborative group working as derived from her empirical research—could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. Methods: Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). Results: Initially it proved difficult to establish working practices informed by Ostrom’s principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become—for most but not all participants—a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). Conclusions: Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what ‘user-led’ means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary.
Development of a health state classification system for the PedsQL™ 4.0 Generic Core Scales for preference-based valuation in Australia.
OBJECTIVES: Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales (PedsQL GCS), comprising 23 items covering four sub-scales (physical, emotional, social, and school functioning), is a widely applied generic measure of childhood health-related quality of life, but does not provide health utilities for cost-effectiveness-based decision-making. This study aimed to develop a reduced item version of PedsQL GCS amenable to health utility derivation in Australia. METHODS: Data sources were two cohorts of the Longitudinal Study of Australian Children, including proxy responses for all PedsQL GCS versions (Toddlers, Young Children, Children, Teens), and the CheckPoint sample containing child self-report to the Children version. Three analytic samples were: CheckPoint sample (n=1,874); Mallinson sample containing one measurement per child from one of the Young Children, Children or Teens versions (n=7,855); and Toddlers sample (n=7,401). Exploratory and confirmatory factor analyses assessed dimensionality. Psychometric analyses used Rasch and classical criteria on three randomly selected subsamples (n=500) per sample. Item selection prioritised psychometric performance in CheckPoint sample, also considering performance in other samples and conceptual content. RESULTS: Dimensionality assessments did not generate an alternative empirical structure for the measure, and psychometric analyses were conducted on the original four sub-scales. The selected items were: 'Get aches and pains' for physical functioning; 'Feel sad/blue' for emotional functioning; 'Other kids not friends' for social functioning; and 'Keeping up with school work' for school functioning. CONCLUSIONS: The final four-item set, pending further psychometric validation and valuation, can generate health utilities from the widely used PedsQL GCS to inform cost-effectiveness-based decision-making.