Search results
Found 4276 matches for
plaTform fOr Urinary tract infection diagnostiC evAluatioN (TOUCAN): a protocol for a prospective diagnostic accuracy study of point-of-care testing in patients suspected of acute uncomplicated urinary tract infection in primary care clinics in England
Abstract Introduction Acute uncomplicated urinary tract infection (UTI) is a common condition with potentially serious sequelae that is mostly diagnosed and managed in primary care settings. Around half of all women have a UTI in their lifetime, and a quarter experience an infection caused by organisms resistant to more than one antibiotic. Reducing inappropriate prescribing of antibiotics is a core tenet of antimicrobial stewardship. However, current diagnostics for UTI are unfit for purpose in acute (highest prescribing) settings, being too slow to inform the required immediate decision-making and often confounded by sample contamination. Rapid point-of-care diagnostic tests (POCTs) that facilitate timely decision-making are potential solutions to this problem. Several such tests have reached advanced stages of technology readiness, but their diagnostic performance has not been evaluated in primary care with clinical users. To progress novel tests towards implementation, a diagnostic field study is required, to allow for parallel and sequential evaluation of multiple tests in a primary care population. Methods and analysis We will recruit participants assigned female at birth from primary care clinics in England who contact their clinic with symptoms of acute uncomplicated UTI. Eligible participants will complete a short questionnaire to capture symptoms and symptom severity and will provide a urine sample. Samples will be split and initially tested using novel index tests (POCTs) and conventional urinalysis ‘dipstick’ at the primary care clinic. The second part of the sample will be processed at a National Health Service-based reference laboratory using a modified reference standard including microscopy, microbiological culture, pathogen speciation and antimicrobial susceptibility testing. The UTI reference standard culture, although based on the national methods, is modified to provide accurate bacterial counts, better to define a microbiological diagnosis of UTI. Susceptibility testing will be performed using ‘gold-standard’ methods, not usually performed in diagnostic laboratories. The primary outcome will be the diagnostic performance (sensitivity, specificity, positive and negative predictive values) of POCTs for detection of UTI and antimicrobial susceptibility for POCTs that include antimicrobial susceptibility testing. Secondary outcomes will include the symptom profile of patients presenting with uncomplicated UTI, a theoretical determination of how use of POCT results might change prescribing, an understanding of POCT failure rate and qualitative capture of the experiences of those using the POCT to deliver the study in primary care clinics. Ethics and dissemination Ethical approval was received from the London Central Research Ethics Committee (23/LO/0371) and the UK Health Research Authority. We will publish the findings of The plaTform fOr Urinary tract infection diagnostiC evAluatioN evaluations in peer-reviewed medical journals and more broadly following a dissemination plan formulated by a communications specialist in consultation with patients and the public.
Do community-based digital health inclusion programmes contribute to tackling health inequalities in disadvantaged population groups?: a qualitative study of experiences of a city-wide programme in the North of England.
Background Advances in digital healthcare and health information provide benefits to the public. However, lack of digital skills together with access, confidence, trust and motivation issues present seemingly insurmountable barriers for many. Such digital health exclusion exacerbates existing health inequalities experienced by older people, people with less income, less education or who don’t have English as a first language. This study examines the role of a city-wide digital inclusion programme in the North of England, which works with Voluntary Sector Community Organisations (VCSOs) to provide digital support to disadvantaged communities (Digital Health Hubs). The aim was to explore if and how Digital Health Hubs contribute to tackling health inequalities, with a specific focus on impacts on service-users and how these impacts are produced. Methods We used qualitative semi-structured interviews to explore the experiences of service-users receiving digital support, and perspectives of staff working for organisations coordinating or providing digital support (n = 30). Results Inductive thematic analysis was used to identify four major themes and mapped to ‘Consolidated Framework for Implementation Research’ constructs. These were: programme components, recipient-centred support, impacts on service-users and system-level barriers to digital health services. Findings suggest moderators of implementation are provision of community spaces, social activities and devices and Wi-fi, and recipient-centred support through community understanding, personalised regular support and trusting relationships. Impacts on service-users include improved social and emotional resilience and basic digital skills. Health system-level barriers to digital health services, such as inconsistency in service provision, were also identified. Conclusions Themes highlight the importance of recipient-centred support by Voluntary and Community Sector Organisations (VCSOs) which centres the unique needs of specific communities. Our data provide policymakers with a model for implementation that could be replicated and scaled-up. Our data add to the public health, primary care and digital health research by proposing an initial programme theory for how Digital Health Hubs may reduce health inequalities, and recommendations for evaluation which consider short-, medium- and long-term outcomes, and contextual factors which are likely to be crucial to Digital Health Hubs’ effectiveness.
Temporal trends and practice variation of paediatric diagnostic tests in primary care: retrospective analysis of 14 million tests
Abstract Objective: The primary objective was to investigate temporal trends and between-practice variability of paediatric test use in primary care. Methods and analysis: This was a descriptive study of population-based data from Clinical Practice Research Datalink Aurum primary care consultation records from 1 January 2007 to 31 December 2019. Children aged 0-15 who were registered to one of the eligible 1464 general practices and had a diagnostic test code in their clinical record were included. The primary outcome measures were (1) temporal changes in test rates measured by the average annual percent change, stratified by test type, gender, age group and deprivation level and (2) practice variability in test use, measured by the coefficient of variation. Results: 14 299 598 diagnostic tests were requested over 27.8 million child-years of observation for 2 542 101 children. Overall test use increased by 3.6%/year (95% CI 3.4 to 3.8%) from 399/1000 child-years to 608/1000 child-years, driven by increases in blood tests (8.0%/year, 95% CI 7.7 to 8.4), females aged 11-15 (4.0%/year, 95% CI 3.7 to 4.3), and children from the most socioeconomically deprived group (4.4% /year, 95% CI 4.1 to 4.8). Tests subject to the greatest temporal increases were faecal calprotectin, fractional exhaled nitric oxide and vitamin D. Tests classified as high-use and high-practice variability were iron studies, coeliac testing, vitamin B12, folate, and vitamin D. Conclusions: In this first nationwide study of paediatric test use in primary care, we observed significant temporal increases and practice variability in testing. This reflects inconsistency in practice and diagnosis rates and a scarcity of evidence-based guidance. Increased test use generates more clinical activity with significant resource implications but conversely may improve clinical outcomes. Future research should evaluate whether increased test use and variability are warranted by exploring test indications and test results and directly examine how increased test use impacts on quality of care.
Developing a quality framework for community pharmacy: a systematic review of international literature
Abstract Background We conducted a mixed methods evaluation to assess whether implementing a primary care quality improvement (QI) programme utilising a digital call-and-recall tool improved timely receipt and equity of first measles, mumps and rubella (MMR) and diphtheria tetanus, pertussis and polio-containing (DTaP /IPV) vaccinations. Methods 138,133 and 136,952 children were eligible to receive first MMR and DTaP/IPV respectively between 1st January 2019 and 31st January 2024 in North East London. We compared proportions with timely first MMR or DTaP/IPV receipt (by ages 18 and six months respectively) pre- and post-implementation using an interrupted time series analysis. We calculated change in the Slope Index of Inequality (SII) by an area-level deprivation measure. We conducted ‘Think Aloud’ exercises and semi-structured interviews with users. Findings The proportion of children with timely first MMR receipt increased by 5·3 % (Rate Ratio [RR]:1·053, 95 % confidence interval [CI]:1·033–1·073), equating to an absolute increase in timely MMR receipt of 4·1 % - from 77·7 % to 81·8 % - and for first DTaP/IPV by 0·9 % (RR:1·009, 95 % CI:1·003–1·015). There was no significant change in SII for either vaccine. Users reported improved recall with tool use, but identified practice-level and systemic barriers, including staff dynamics and unachievable national targets, limiting its consistent use. Interpretation In a real-world setting, a call-and-recall tool within a primary care QI programme improved timely first MMR receipt. Sustained improvement requires additional support including by incentivising achievable targets and improving staff capacity and training.
The prevalence and determinants of health anxiety during the covid-19 pandemic: A systematic review and meta-analysis
Abstract The coronavirus disease 2019 (COVID-19) pandemic subjected the global population to a situation that aroused disproportionate Health Anxiety (HA). However, this association has not been explored in a systematic review or meta-analysis. The aim of this systematic review was to assess the prevalence and determining factors of HA in the general adult population during the COVID-19 pandemic. A systematic search was conducted across the databases MEDLINE, PsychINFO, Embase and Web of Science. Observational studies using the 18-item Short Health Anxiety Inventory to measure HA during the pandemic were included. A narrative synthesis and meta-analysis summarised HA levels in the general adult population, subgroups and by associated factors. Out of 4088 studies, 12 met the inclusion criteria. Meta-analyses revealed a mean HA score of 15.16 (SE = 0.415). Significantly higher HA levels were observed among females, unmarried individuals, and those with pre-existing health conditions. The HA score of 15.16 suggests elevated HA during the COVID-19 pandemic compared to pre-pandemic studies. Understanding which groups may be more affected by HA during pandemics and health crises will enable us to develop more tailored public health strategies to mitigate the psychological effects of future public health crises. Further research is needed to establish causal and longitudinal relationships.
Service delivery and the role of clinical pharmacists in UK primary care for older people, including people with dementia: a scoping review
Abstract Objective As populations age globally, there is increasing prevalence of multiple long-term conditions, such as dementia, leading to many challenges. The burden on health and care services, economic pressures, and the necessity for innovative policies to better support older people and people with dementia becomes paramount. This review explores how clinical pharmacists working in UK primary care support older people and people with dementia. Design Scoping review. Method This review was conducted following the framework for scoping reviews in accordance with the Joanna Briggs Institute (JBI) methodology. The search of Scopus, EMBASE, CINAHL, Web of Science, PsycINFO, and Cochrane was initially conducted in September 2022, and updated in August 2024. Searches included literature exploring the landscape of clinical pharmacy services for older people in the UK, focusing on roles and services delivered, perceptions, and experiences. Results A total of 30 articles were included. These detail the multifaceted responsibilities of clinical pharmacists in primary care for older people. Stakeholder perspectives, including healthcare professionals and patients, emphasised the positive outcomes of clinical pharmacist involvement, from reducing other practitioners’ workloads to improving patient safety. However, communication gaps, concerns about competence from other healthcare professionals, and the need for clear role definitions emerged as challenges. Research focused on the experiences of underserved groups, such as people with dementia or from minority ethnic backgrounds, is lacking. Conclusions and implications The review enhances our understanding of the primary care clinical pharmacist service in the UK and identifies gaps in evidence, emphasising the need for empirical studies on the experiences of older people with cognitive impairment and those from minority ethnic backgrounds. It provides insights into what makes an effective clinical pharmacist service, such as training and communication, which may help to inform international policy and practice and improve service provision globally.
The role of Black-led community organisations in supporting Black mental health: a Black emancipatory action research project
ABSTRACT Objective To explore the role of Black-led community organisations in supporting Black mental health and wellbeing in the UK. Design A qualitative, Black Emancipatory Action Research Framework was adopted. Framework application involved adequately compensating community organisations for their consultancy role; having ‘research conversations’ rather than interviewing participants; and focusing outputs on community benefit. Eight individual and group research conversations took place with nine Black directors, employees and volunteers working with Black-led community organisations, aged between 19 and 62, living in the UK. Reflexive thematic analysis was used to analyse conversations. Results Three themes were developed in relation to what Black-led community organisations do for Black mental health. These are: identify and respond to mental health needs; selectively build relationships with mainstream services; and drive social and systemic improvements. Findings revealed that Black-led community organisations uniquely identify and address mental wellbeing by offering respite from racism, hosting activities, and meeting urgent needs. They navigate and facilitate access to health and social systems, protect communities from harmful services, and advocate for social and systemic change. Drawing on the study design, findings, and the broader literature, we propose three key changes to current funding, community, and research practices. These are a reconsideration of how Black-led organisations’ work is valued and measured, a forging of greater collaboration between these organisations, and bolder consideration of how research practice can benefit Black communities. Conclusions Black-led organisations play multiple roles in supporting individual and collective mental health, crucial for mediating the effects of racism and mitigating ethnic inequalities. To our knowledge, this is the first study to both illuminate the critical role of community organisations in promoting Black mental health in the UK and to prioritise participant, and community, benefit throughout the research process.
Risk of Parkinson’s disease in people aged ≥50 years with new-onset anxiety: a retrospective cohort study in UK primary care
Abstract Background A history of anxiety is more common in people with Parkinson’s disease (PD). The prospective risk of PD in those newly presenting with anxiety and factors that increase the risk of PD in patients with anxiety have not been investigated. Aim To investigate the incidence of PD in people with anxiety aged ≥50 years and clinical features associated with later diagnosis of PD in people with anxiety. Design and setting A retrospective cohort study using UK primary care data between 2008 and 2018, assessing patients with new-onset anxiety aged ≥50 years. Method Weibull survival regression models were fitted and hazard ratios (HRs) for modelling time-to-PD was estimated in those with and without anxiety, and when determining the risk of developing PD in those with anxiety. Results were adjusted for sociodemographic and lifestyle factors, and relevant physical and mental health conditions. Results The risk of PD increased two-fold compared with the non-anxiety group after adjustment for age, sex, social deprivation, lifestyle factors, severe mental illness, head trauma, and dementia (HR 2.1, 95% confidence interval = 1.9 to 2.4). In those with anxiety, the presence of depression, hypotension, tremor, rigidity, balance impairment, constipation, sleep disturbance, fatigue, and cognitive impairment were associated with an increased risk of developing PD. Conclusion The risk of developing PD was at least doubled in people with anxiety compared with those without. The clinical features of those who developed PD can help identify patients presenting with anxiety who are in the prodromal phase of PD.
Defining Mental Health Conditions Within Primary Care Data: A Validation Study With a Mixed Qualitative and Quantitative Approach
ABSTRACT Objectives To validate codelists for defining a range of mental health (MH) conditions with primary care data, using a mixed qualitative and quantitative approach and without requiring external data. Methods We validated Read codelists, selecting and classifying them in three steps. The qualitative step included an in-depth revision of the codes by six doctors. Simultaneously, the quantitative step performed on UK primary care data included an exploratory factor analysis to cluster Read codes in MH conditions to obtain an independent classification. The statistical results informed the qualitative conclusions, generating a final selection and classification. Results From a preselected list of 2007 Read codes, a total of 1638 were selected by all doctors. Later, they agreed on classifying these codes into 12 categories of MH disorders. From the same preselected list, a total of 1364 were quantitatively selected. Using data from 497,649 persons who used these Read codes at least once, we performed the exploratory factor analysis, retaining five factors (five categories). Both classifications showed good correspondence, while discrepancies informed decisions on reclassification. Conclusions We produced a comprehensive set of medical codes lists for 12 MH conditions validated by a combination of clinical consensus panel and quantitative cluster analysis with cross-validation.
Biomarkers Suitable for Early Detection of Intrathoracic Cancers in Primary Care: A Systematic Review
Abstract Intrathoracic cancers, including lung cancer, mesothelioma, and thymoma, present diagnostic challenges in primary care. Biomarkers could resolve some challenges. We synthesized evidence on biomarker performance for intrathoracic cancer detection in low-prevalence settings. A search in Embase and MEDLINE included studies that recruited participants with suspected intrathoracic cancer and reported on at least one diagnostic measure for a validated, noninvasive biomarker. Studies were excluded if participants were recruited based on a preestablished diagnosis. A total of 52 studies were included, reporting on 108 individual biomarkers and panels. Carcinoembryonic antigen, CYFRA 21-1, and VEGF were evaluated for lung cancer and mesothelioma. For lung cancer, carcinoembryonic antigen and CYFRA 21-1 were the most studied, with AUCs of 0.48 to –0.90 and 0.48 to –0.83, respectively. Pro–gastrin-releasing peptide (Pro-GRP) and neuron-specific enolase (NSE) had the highest negative predictive values (NPV) (98.2% and 96.9%, respectively), whereas Early Cancer Detection Test - Lung (Early CDT) and miRNA signature classifier panels showed NPVs of 99.3% and 99.0%, respectively, in smokers. For mesothelioma, fibrillin-3 and mesothelin plus osteopontin had AUCs of 0.93 and 0.91, respectively. Thymoma panels (binding AcHR + StrAb and binding AcHR + modulating AcHR + StrAb) had 100% NPVs in patients with myasthenia gravis. The review highlights the performance of some biomarkers. However, few were evaluated in low-prevalence settings. Further evaluation is necessary before implementing these biomarkers for intrathoracic cancers in primary care.
Experiences and impact of moral injury in prisons
ABSTRACT Moral injury is the persistent mental or emotional distress resulting from events that challenge one’s moral beliefs. It is characterised by intense shame, guilt, worthlessness, disgust or anger and can contribute towards the development of serious mental disorders. The nature of working in prisons means that staff often face physically and psychologically challenging scenarios, and prison staff report high rates of mental ill-health and suicidal thoughts. Equally, detainees may be especially vulnerable to moral injury-related mental health difficulties having engaged in illicit actions and been found guilty by a jury of their peers as well as, in high profile cases, the court of public opinion. Despite this, there is an evidence gap about the extent of moral injury in both prison staff and detainee populations, and about how prison staff/detainees can be better supported. How struggling with moral injury may be linked to reoffending amongst detainees and burnout or resignations in prisons staff is currently unknown. In resource strapped prison settings, emerging treatments for moral injury-related mental health difficulties are unlikely to be appropriate or feasible. In this article, we highlight the contexts in which moral injury may arise; the unique challenges to treatment and support for moral injury in prison settings; and offer targeted recommendations for future research and clinical practice.
Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study
Abstract Background: Patient and public involvement and engagement (PPIE) is integral to health research. Reporting of PPIE methods and impact is becoming increasingly common in health research. However, reporting on PPIE in studies using large, routinely collected electronic health record data sets is less common. Anecdotal evidence suggests that involvement in this research context is more challenging and offers fewer opportunities for meaningful influence on the research process. Objectives: This paper reports the involvement approach for a Clinical Practice Research Datalink (CPRD) study and critically reflects on the process and impact of involving young people, parents and carers in research using this UK primary care electronic health record data set. Methods: The CHOOSE study investigated mental health diagnoses of children and young people (1-24 years) during the COVID-19 pandemic using the CPRD. The study was informed by a Lived Experience Advisory Panel (LEAP) which consisted of 13 members including 8 young people (13-25 years) with lived experience of mental health difficulties and 5 parents/carers, with involvement activities facilitated by project partners, mental health research charity, The McPinR Foundation. We reflect on this process in this manuscript. Results: Key benefits of involving people with lived experience in this research included making sense of and contextualising findings and ensuring that they were focused on making a difference to young people's lives. Challenges included the fixed nature of the CPRD data, which did not capture all the information people with lived experience perceived to be important. Researchers expressed limited time for PPIE activities although that was compensated by McPin colleagues who organised and facilitated online meetings, and supported the young people, parents and carers during and between meetings. Conclusions: This paper describes an approach to patient and public involvement in an electronic health record database study. Working collaboratively with young people, carers and other stakeholders requires sufficient time and adequate resources. We also highlight the importance of appropriate training and support and being transparent about the limitations of PPIE involvement.
Editorial perspective: digital technology and the future of mental health treatment
Introduction Digital technology in mental health treatment is an evolving field, rooted in decades of research on human–machine interactions. One of the earliest examples was ELIZA, a 1960s chatbot developed in the 1960s to simulate a psychotherapist. This collection, Digital Technology and the Future of Mental Health Treatment, explores how advanced digital tools are being integrated into mental health care, highlighting challenges and potential benefits. Today, health technologies offer opportunities to expand access, personalize interventions, and scale treatments globally. However, ethical concerns, privacy issues, and the need for human connection remain critical. The following editorial outlines key considerations for researchers, clinicians, and policymakers, including evidence-based methodologies, research frameworks, interdisciplinary collaboration, and adapting interventions for inclusive delivery.
Employment and deployment of additional roles: What works for whom, how and why?
Background Additional Roles Reimbursement Scheme (ARRS) was introduced in England in 2019 to alleviate workforce pressures in general practice by funding additional staff such as clinical pharmacists, paramedics, first contact physiotherapists and from 2024/25, the scheme will fund recently qualified GPs. However, the employment and deployment models of ARRS staff present ongoing complexities and challenges that require further exploration. Aim This study explores the decision-making processes behind Primary Care Networks (PCNs) and general practice staffing choices, and how these choices influence the operationalisation of ARRS. Design A qualitative case study across four PCNs in England using a realist evaluation framework. Method Data collection took place between September 2022 – November 2023. Semi-structured interviews were conducted with PCN Clinical Directors, GPs, practice managers and ARRS staff (n=42). Transcripts were analysed using a realist evaluation framework to identify the context-mechanism-outcome configuration. Results Direct employment models fostered staff development and retention, contingent upon established trust among practices. Subcontracting was favoured to mitigate employment risks but could lead to unintended consequences like conflicting accountabilities and less integration with existing GP practice staff. The optimal deployment model involved rotations across a limited number of GP practices, ideally two, with one serving as a base, ensuring consistency in training and management. Conclusion This study provides novel insights into the complexities of different employment and deployment models of ARRS staff. These findings will be invaluable for creating a sustainable GP practice workforce and informing future workforce strategies as the scheme expands to include recently qualified GPs
‘They don’t even teach you how to make money!’ What insights can marginalised young people provide into developing inclusive education policy?
Using data from a qualitative study exploring the intersections of school exclusion, mental health, and involvement in criminal behaviour, we explore young people’s experience of schools to inform consideration of how schools might be modified to help improve mental health and engagement, and take a more proactive role in safeguarding young people from contextual risks. We draw on sociological theories considering how inequity and disadvantage may be reproduced. Poor experiences of school create disengagement, perpetuate deep structural inequalities, and can act as a motivating force to gain status and money through the illicit economy. Broadening the focus in schools, away from the narrow pursuit of academia, to include more group-based and project-based learning; placing greater priority on life skills and vocational training; and focussing more on developing a sense of belonging through sports and arts may benefit all students, particularly those most at risk of exclusion. If the education system is to build stronger engagement with the most marginalised students, it must actively support them to achieve their priority to find (legitimate) means of earning money.
Communicating blood test results in primary care: a mixed methods systematic review
Background Test result communication is important for patient-centred care, patient safety and primary care workload. Evidence is needed to ensure that test results are communicated safely and efficiently to patients in primary care. Aim To summarize existing evidence for blood test result communication between primary care providers and their patients and carers. Design and setting Mixed-methods systematic review Methods Medline, Embase, PsycINFO (Ovid); CINAHL (ESCOHost); and the Cochrane Library were searched from 2013 to September 2023. Primary studies of any design that provided information on the communication of blood test results by primary care staff to adult patients and carers were eligible for inclusion. Results There were 71 included studies, including 10 experimental studies and no randomized controlled trials. Study quality was mostly poor and risk of bias was high, partly due to a lack of reported information. Patients want more information about their blood test results, particularly in terms of ‘what next’, and prefer results to be provided quickly. Electronic methods such as online access or text messages were generally well accepted but not by everyone, and not for all results. Clinicians' opinions were mixed as to whether more information and direct release of test results to patients without clinician input was beneficial or could cause problems, such as increased workload. Conclusions We have identified a range of evidence on patient and clinician preferences, barriers and facilitators to test communication, which is particularly important in the current NHS context of a move towards patient online access.
GP workforce sustainability to maximise effective and equitable patient care: a realist review of what works, for whom and in what circumstances?
Background UK general practice has been described as being in crisis. A shortage and exodus of GPs is an urgent and challenging problem, attracting significant media attention, widespread public debate, and policy action. Aim Our review aims to examine which aspects of the healthcare system affect GP workforce sustainability, how, why, and for whom. Method A realist review is an interpretive, theory-driven approach to evidence synthesis, that brings together data from quantitative, qualitative, mixed methods research, and the wider grey literature (e.g., policy documentation). Using this data allows us to examine a diverse range of evidence with a clear focus on understanding factors which support (or hinder) GP workforce sustainability, how these are shaped by contexts, and the mechanisms that underpin them. We identify important individual and system-level contexts that may be amenable to change. Results We present our emerging findings in the form of a programme theory which explores human connection with patients, colleagues, and across organisations, gaining intellectual enrichment and learning systems comprising socially-situated knowledge. Relational continuity is key across these, supporting GP workforce sustainability. Challenges include standardisation, alienation and professional loneliness, inflexible organisation, and restrictive technologies. Conclusion Our research generates new knowledge about the interdependencies between contexts, mechanisms, and outcomes. The findings can inform strategies and interventions intended to support, facilitate, and assist the GP workforce in delivering equitable and effective patient care. We identify critical gaps in knowledge and prioritise the expectations for scope and nature of future GP work and retention strategies.
Treatment burden in multiple long-term conditions: a mixed-methods study protocol
Abstract Background Treatment burden represents the work patients undertake because of their health care, and the impact of that effort on the patient. Most research has focused on older adults (aged >65 years) with multiple long-term conditions (multimorbidity) (MLTC-M), but there are now more younger adults (aged 18–65 years) living with MLTC-M and they may experience treatment burden differently. Understanding experiences of treatment burden, and identifying those most at risk of high treatment burden, are important for designing primary care services to meet their needs. Aim To understand the treatment burden associated with MLTC-M, for people aged 18–65 years, and how primary care services affect this burden. Design & setting Mixed-methods study in up to 33 primary care practices in two UK regions. Method The following two approaches will be used: (i) in-depth qualitative interviews with adults living with MLTC-M (approximately 40 participants) to understand their experiences of treatment burden and the impact of primary care, with a think-aloud aspect to explore face validity of a novel short treatment burden questionnaire (STBQ) for routine clinical use in the initial 15 interviews; (ii) cross-sectional patient survey (approximately 1000 participants), with linked routine medical record data to examine the factors associated with treatment burden for people living with MLTC-M, and to test the validity of STBQ. Conclusion This study will generate in-depth understanding of the treatment burden experienced by people aged 18–65 years living with MLTC-M, and how primary care services affect this burden. This will inform further development and testing of interventions to reduce treatment burden, and potentially influence MLTC-M trajectories and improve health outcomes.
Long-term outcomes of COVID-19 infection in children and young people: a systematic review and meta-analysis
Background Children and young people (CYP) may experience prolonged symptoms following COVID-19, commonly termed ‘Long-COVID’. The nature of this in CYP is unclear, as are the sequalae of acute COVID-19. We aimed to systematically synthesise evidence of the long-term outcomes of COVID-19 in CYP. Methods 13 databases were searched until January 2022. Inclusion criteria: Observational studies reporting outcomes occurring four-weeks or more after COVID-19 in children <18 years old. Exclusion criteria: Outcomes of Paediatric Inflammatory Multisystem Syndrome. Title, abstract and full text screening were conducted independently by two reviewers. Data extraction and risk of bias assessment was by one reviewer with independent verification. Critical appraisal tools appropriate for study type were employed. Results were narratively synthesised with meta-analysis to generate summary estimates of risk of prolonged symptoms in CYP.
Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?
ABSTRACT 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.
Latest news
NIHR Three Research Schools Early Career Researcher Event
27 January 2025
On Wednesday, 20th November 2024, early career researchers from across the NIHR Three Research Schools' gathered for an inspiring day of networking, thought-provoking sessions, and lively discussions.
NIHR Mental Health Fellowship Yields Insights on Primary Care and Parkinson’s Risk
23 January 2025
Dr. Juan Carlos Bazo Alvarez, a former NIHR Three Research Schools' Mental Health Programme Fellow, has recently celebrated the publication of two research papers stemming from his Fellowship.
SPCR Bitesize Impact Showcases
20 January 2025
Join us for a series of engaging webinars highlighting the successes and impact of our research.