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When electronic cigarettes (e-cigarettes) first emerged, they became a popular way for people to quit smoking. But in 2019, a mysterious lung condition emerged that primarily affected young people, particularly those who vaped. This left many questioning the safety of e-cigarettes.
Terms of engagement for working with patients in a person-centred partnership: A secondary analysis of qualitative data
Evidence is emerging of the potential of person-centred approaches to create partnerships between professionals and patients while also containing healthcare costs. This is important for enhancing outcomes in individuals with complex needs, who consistently report poor experiences with care. The shift towards person-centred care (PCC) is, however, a radical departure from the norm, with increased expectations of both professional and patient. Although there have been studies on the ways in which health care professionals can modify practice to enhance PCC, not all patients welcome changes to their care delivery or understand the aim of the new approach. Without engagement and understanding from the patient, a PCC approach will fail to initiate. Few studies explore how, why and in what circumstances patients become more involved in their care and what professionals can do to enhance participation. We conducted a secondary analysis of qualitative data to examine this issue. Data were collected between 2014 and 2018 from primary care-based PCC projects across the southwest of England. Supported by people with experience (practitioners and those receiving treatment), theory building workshops developed an explanatory framework that identified contextual factors and mechanisms likely to contribute to effective engagement. Our results show that engagement in a care partnership is achieved through trust and a patient's sense of candidacy. Shared understanding of purpose, clarity of expectations and power sharing were found to facilitate trusted relationships between professional and patient and encourage candidacy. Only then is it possible to develop goals that are meaningful to the patient. Our theory of engagement applies to professionals and patients alike but places the initial burden of responsibility on those who hold the most power: the professional and the system. This theory has the potential to explain patient engagement in PCC and a range of other service interventions, treatments and intervention research.
Impact of COVID-19 on social prescribing across an Integrated Care System: A Researcher in Residence study
Emerging evidence suggests that connecting people to non-medical activities in the community (social prescribing) may relieve pressure on services by promoting autonomy and resilience, thereby improving well-being and self-management of health. This way of working has a long history in the voluntary and community sector but has only recently been widely funded by the National Health Service (NHS) in England and implemented in Primary Care Networks (PCNs). The COVID-19 global pandemic coincided with this new service. There is wide variation in how social prescribing is implemented and scant evidence comparing different delivery models. As embedded researchers within an Integrated Care System in the Southwest of England, we examined the impact of COVID on the implementation of social prescribing in different employing organisations during the period March 2020 to April 2021. Data were collected from observations and field notes recorded during virtual interactions with over 80 social prescribing practitioners and an online survey of 52 social prescribing practitioners and middle managers. We conceptualise social prescribing as a pathway comprising access, engagement and activities, facilitated by workforce and community assets and strategic partnerships. We found that these elements were all impacted by the pandemic, but to different degrees according to the way the service was contracted, whether referrals (access) and approach (engagement) were universal (‘open’) or targeted (‘boundaried’) and the extent to which practitioners’ roles were protected or shifted towards immediate COVID-specific work. Social prescribers contracted in PCNs were more likely to operate an ‘open’ model, although boundaries were developing over time. We suggest the presence of an explicit, agreed delivery model (whether ‘open’ or ‘boundaried’) might create a more coherent approach less likely to result in practitioner role drift, whilst allowing flexibility to adjust to the pandemic and enhancing practitioner satisfaction and well-being. The potential consequences of different models are examined.
Music and dance in respiratory disease management in Uganda: A qualitative study of patient and healthcare professional perspectives
Introduction Music and dance are increasingly used as adjunctive arts-in-health interventions in high-income settings, with a growing body of research suggesting biopsychosocial benefits. Such low-cost, low-resource interventions may have application in low-resource settings such as Uganda. However, research on perceptions of patients and healthcare professionals regarding such approaches is lacking. Methods We delivered sample sessions of music and dance for chronic respiratory disease (CRD) to patients and healthcare professionals. Seven participants took part in one singing and dance sample session. One patient completed only the dance session. We then conducted an exploratory qualitative study using thematic analysis of semistructured interviews with healthcare professionals and patients regarding (1) the role of music and dance in Ugandan life and (2) the perceived acceptability and feasibility of using music and dance in CRD management in Uganda. Results We interviewed 19 participants, made up of 11 patients with long-term respiratory conditions and 8 healthcare professionals, who were selected by purposeful convenience sampling. Four key themes were identified from interview analysis: music and dance (1) were central components of daily life; (2) had an established role supporting health and well-being; and (3) had strong therapeutic potential in respiratory disease management. The fourth theme was (4) the importance of modulating demographic considerations of culture, religion and age. Conclusion Music and dance are central to life in Uganda, with established roles supporting health and well-being. These roles could be built on in the development of music and dance interventions as adjuncts to established components of CRD disease management like pulmonary rehabilitation. Through consideration of key contextual factors and codevelopment and adaptation of interventions, such approaches are likely to be well received.
Complexity in simple tasks: A qualitative analysis of GPs’ completion of long-term incapacity forms
To explore the factors influencing the completion of the IB113 form for the Department for Work and Pensions (DWP), as an exemplar of how general practitioners (GPs) manage and report patient information to external bodies. In UK, GPs complete IB113 forms for their patients approaching longer-term sickness absence, who may be exempt from the incapacity benefit linked medical examination. The DWP has expressed concerns about the quality of such reports, and GP organizations have raised objections to completing such forms. The content of returned forms is variable, and may be subject to a number of influences. Qualitative interviews with purposive sampling of GPs and practice managers (PMs). Primary Care practices in the North East of England. GPs and PMs were interviewed using a semi-structured topic guide about completing IB113 forms for the DWP about their patients entering long-term incapacity. The transcribed data were analysed thematically using the framework analysis method. Whilst the IB113 appears superficially straightforward to complete, our results demonstrate levels of overlapping complexity that add ranges of subjectivity and selectivity onto factual reporting, including practice protocols, the gathering and managing of information, the doctor–patient relationship, and doctor’s personal views on systems. The recording and reporting of patient related data by GPs is subject to complex influences, which need to be understood and managed to improve the relevance and quality of reports to third parties. © 2009, Cambridge University Press. All rights reserved.
Child protection and health promotion: Whose responsibility?
Conflicting ideologies of individual ‘responsibility’ are expounded in two aspects of Government policy which have specific implications for the family: the Children Act 1989 and the Government's strategy for health, as set out in Health of the Nation. These conflicting concepts underpin contradictions in the casting of both professional and parental responsibility for the health and welfare of young children. This paper examines assumptions about responsibility which underpin both welfare policies, and compares them with mothers’ accounts of concept and fulfillment of parental responsibility, revealed during research in the North-west of England. We then go on to consider how these conflicting concepts are played out in mothers ’ interactions with the health visitor, a key member of the primary health care team whose role in implementing government welfare policy for young children is to act both as mother's friend and parental inspector. The impact of this paradox is that the health visitor’s role under the Children Act in child protection may subvert her/his role in promoting health and contributing to the achievement of targets for health gain, as set out in Health of the Nation. © 1997 Routledge.
Admission Decision-Making in Hospital Emergency Departments: The Role of the Accompanying Person
In resource-stretched emergency departments, people accompanying patients play key roles in patients’ care. This article presents analysis of the ways health professionals and accompanying persons talked about admission decisions and caring roles. The authors used an ethnographic case study design involving participant observation and semi-structured interviews with 13 patients, 17 accompanying persons and 26 health care professionals in four National Health Service hospitals in south-west England. Focused analysis of interactional data revealed that professionals’ standardization of the patient–carer relationship contrasted with accompanying persons’ varied connections with patients. Accompanying persons could directly or obliquely express willingness, ambivalence and resistance to supporting patients’ care. The drive to avoid admissions can lead health professionals to deploy conversational skills to enlist accompanying persons for discharge care without exploring the meanings of their particular relationship with the patients. Taking a relationship-centered approach could improve the attention to accompanying persons as co-producers of health care and participants in decision-making.
How can frontline expertise and new models of care best contribute to safely reducing avoidable acute admissions? A mixed-methods study of four acute hospitals
BackgroundHospital emergency admissions have risen annually, exacerbating pressures on emergency departments (EDs) and acute medical units. These pressures have an adverse impact on patient experience and potentially lead to suboptimal clinical decision-making. In response, a variety of innovations have been developed, but whether or not these reduce inappropriate admissions or improve patient and clinician experience is largely unknown.AimsTo investigate the interplay of service factors influencing decision-making about emergency admissions, and to understand how the medical assessment process is experienced by patients, carers and practitioners.MethodsThe project used a multiple case study design for a mixed-methods analysis of decision-making about admissions in four acute hospitals. The primary research comprised two parts: value stream mapping to measure time spent by practitioners on key activities in 108 patient pathways, including an embedded study of cost; and an ethnographic study incorporating data from 65 patients, 30 carers and 282 practitioners of different specialties and levels. Additional data were collected through a clinical panel, learning sets, stakeholder workshops, reading groups and review of site data and documentation. We used a realist synthesis approach to integrate findings from all sources.FindingsPatients’ experiences of emergency care were positive and they often did not raise concerns, whereas carers were more vocal. Staff’s focus on patient flow sometimes limited time for basic care, optimal communication and shared decision-making. Practitioners admitted or discharged few patients during the first hour, but decision-making increased rapidly towards the 4-hour target. Overall, patients’ journey times were similar, although waiting before being seen, for tests or after admission decisions, varied considerably. The meaning of what constituted an ‘admission’ varied across sites and sometimes within a site. Medical and social complexity, targets and ‘bed pressure’, patient safety and risk, each influenced admission/discharge decision-making. Each site responded to these pressures with different initiatives designed to expedite appropriate decision-making. New ways of using hospital ‘space’ were identified. Clinical decision units and observation wards allow potentially dischargeable patients with medical and/or social complexity to be ‘off the clock’, allowing time for tests, observation or safe discharge. New teams supported admission avoidance: an acute general practitioner service filtered patients prior to arrival; discharge teams linked with community services; specialist teams for the elderly facilitated outpatient treatment. Senior doctors had a range of roles: evaluating complex patients, advising and training juniors, and overseeing ED activity.ConclusionsThis research shows how hospitals under pressure manage complexity, safety and risk in emergency care by developing ‘ground-up’ initiatives that facilitate timely, appropriate and safe decision-making, and alternative care pathways for lower-risk, ambulatory patients. New teams and ‘off the clock’ spaces contribute to safely reducing avoidable admissions; frontline expertise brings value not only by placing senior experienced practitioners at the front door of EDs, but also by using seniors in advisory roles. Although the principal limitation of this research is its observational design, so that causation cannot be inferred, its strength is hypothesis generation. Further research should test whether or not the service and care innovations identified here can improve patient experience of acute care and safely reduce avoidable admissions.FundingThe National Institute for Health Research (NIHR) Health Services and Delivery Research programme (project number 10/1010/06). This research was supported by the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.
Collaborative action for person-centred coordinated care (P3C): An approach to support the development of a comprehensive system-wide solution to fragmented care
Background: Fragmented care results in poor outcomes for individuals with complexity of need. Person-centred coordinated care (P3C) is perceived to be a potential solution, but an absence of accessible evidence and the lack of a scalable 'blue print' mean that services are 'experimenting' with new models of care with little guidance and support. This paper presents an approach to the implementation of P3C using collaborative action, providing examples of early developments across this programme of work, the core aim of which is to accelerate the spread and adoption of P3C in United Kingdom primary care settings. Methods: Two centrally funded United Kingdom organisations (South West Collaboration for Leadership in Applied Health Research and Care and South West Academic Health Science Network) are leading this initiative to narrow the gap between research and practice in this urgent area of improvement through a programme of service change, evaluation and research. Multi-stakeholder engagement and co-design are core to the approach. A whole system measurement framework combines outcomes of importance to patients, practitioners and health organisations. Iterative and multi-level feedback helps to shape service change while collecting practice-based data to generate implementation knowledge for the delivery of P3C. The role of the research team is proving vital to support informed change and challenge organisational practice. The bidirectional flow of knowledge and evidence relies on the transitional positioning of researchers and research organisations. Results: Extensive engagement and embedded researchers have led to strong collaborations across the region. Practice is beginning to show signs of change and data flow and exchange is taking place. However, working in this way is not without its challenges; progress has been slow in the development of a linked data set to allow us to assess impact innovations from a cost perspective. Trust is vital, takes time to establish and is dependent on the exchange of services and interactions. If collaborative action can foster P3C it will require sustained commitment from both research and practice. This approach is a radical departure from how policy, research and practice traditionally work, but one that we argue is now necessary to deal with the most complex health and social problems.
How do primary care clinicians approach the management of frailty? A qualitative interview study
Background: Around 15% of adults aged over 65 live with moderate or severe frailty. Contractual requirements for management of frailty are minimal and neither incentivised nor reinforced. Previous research has shown frailty identification in primary care is ad hoc and opportunistic, but there has been little focus on the challenges of frailty management, particularly within the context of recent introduction of primary care networks and an expanding allied health professional workforce. Aim: Explore the views of primary care clinicians in England on the management of frailty. Design and setting: Semi-structured interviews were conducted with clinicians across England, including general practitioners (GPs), physician associates, nurse practitioners, paramedics and clinical pharmacists. Thematic analysis was facilitated through NVivo (Version 12). Results: A total of 31 clinicians participated. Frailty management was viewed as complex and outside of clinical guidelines with medication optimisation highlighted as a key example. Senior clinicians, particularly experienced GPs, were more comfortable with managing risk. Relational care was important in prioritising patient wishes and autonomy, for instance to remain at home despite deteriorations in health. In settings where more formalised multidisciplinary frailty services had been established this was viewed as successful by clinicians involved. Conclusion: Primary care clinicians perceive frailty as best managed through trusted relationships with patients, and with support from experienced clinicians. New multidisciplinary working in primary care could enhance frailty services, but must keep continuity in mind. There is a lack of evidence or guidance for specific interventions or management approaches.
Diagnostic accuracy of a point-of-care antigen test for SARS-CoV-2 and influenza in a primary care population (RAPTOR-C19)
Objectives: Limited evidence exists for the diagnostic performance of point-of-care tests for SARS-CoV-2 and influenza in community healthcare. We carried out a prospective diagnostic accuracy study of the LumiraDx™ SARS-CoV-2 and influenza A or B assay in primary care. Methods: Total of 913 adults and children with symptoms of current SARS-CoV-2 infection were recruited from 18 UK primary care practices during a period when Omicron was the predominant COVID variant of concern (June 2022 to December 2022). Trained health care staff performed the index test, with diagnostic accuracy parameters estimated for SARS-CoV-2 and influenza against real-time reverse-transcription PCR (rtRT-PCR). Results: 151/887 participants were SARS-CoV-2 rtRT-PCR positive, 109 positive for Influenza A, 6 for Influenza B. Index test sensitivity for SARS-CoV-2 was 80.8% (122 of the 151, 95% CI, 73.6–86.7%) and specificity 98.9% (728 of the 736, 95% CI, 97.9–99.5%). For influenza A, sensitivity was 61.5% (67 of the 109, 95% CI, 51.7–70.6%) and specificity 99.4% (771 of the 776, 95% CI, 98.5–99.8%). Sensitivity to detect SARS-CoV-2 and influenza dropped sharply at rtRT-PCR cycle thresholds (Ct) > 30. Discussions: The LumiraDx™ SARS-CoV-2 and influenza A/B assay had moderate sensitivity for SARS-CoV-2 in symptomatic patients in primary care, with lower performance with high rtRT-PCR Ct. Negative results in this patient group cannot definitively rule out SARS-CoV-2 or influenza.
Identifying patients with undiagnosed small intestinal neuroendocrine tumours in primary care using statistical and machine learning: model development and validation study
Background: Neuroendocrine tumours (NETs) are increasing in incidence, often diagnosed at advanced stages, and individuals may experience years of diagnostic delay, particularly when arising from the small intestine (SI). Clinical prediction models could present novel opportunities for case finding in primary care. Methods: An open cohort of adults (18+ years) contributing data to the Optimum Patient Care Research Database between 1st Jan 2000 and 30th March 2023 was identified. This database collects de-identified data from general practices in the UK. Model development approaches comprised logistic regression, penalised regression, and XGBoost. Performance (discrimination and calibration) was assessed using internal-external cross-validation. Decision analysis curves compared clinical utility. Results: Of 11.7 million individuals, 382 had recorded SI NET diagnoses (0.003%). The XGBoost model had the highest AUC (0.869, 95% confidence interval [CI]: 0.841–0.898) but was mildly miscalibrated (slope 1.165, 95% CI: 1.088–1.243; calibration-in-the-large 0.010, 95% CI: −0.164 to 0.185). Clinical utility was similar across all models. Discussion: Multivariable prediction models may have clinical utility in identifying individuals with undiagnosed SI NETs using information in their primary care records. Further evaluation including external validation and health economics modelling may identify cost-effective strategies for case finding for this uncommon tumour.
Understanding the causes of missingness in primary care: a realist review
Background: Although missed appointments in healthcare have been an area of concern for policy, practice and research, the primary focus has been on reducing single ‘situational’ missed appointments to the benefit of services. Little attention has been paid to the causes and consequences of more ‘enduring’ multiple missed appointments in primary care and the role this has in producing health inequalities. Methods: We conducted a realist review of the literature on multiple missed appointments to identify the causes of ‘missingness.’ We searched multiple databases, carried out iterative citation-tracking on key papers on the topic of missed appointments and identified papers through searches of grey literature. We synthesised evidence from 197 papers, drawing on the theoretical frameworks of candidacy and fundamental causation. Results: Missingness is caused by an overlapping set of complex factors, including patients not identifying a need for an appointment or feeling it is ‘for them’; appointments as sites of poor communication, power imbalance and relational threat; patients being exposed to competing demands, priorities and urgencies; issues of travel and mobility; and an absence of choice or flexibility in when, where and with whom appointments take place. Conclusions: Interventions to address missingness at policy and practice levels should be theoretically informed, tailored to patients experiencing missingness and their identified needs and barriers; be cognisant of causal domains at multiple levels and address as many as practical; and be designed to increase safety for those seeking care.
Patient and stakeholder engagement on the role that Social Prescribing might play in supporting the health and wellbeing of people diagnosed with Mild Cognitive Impairment
There is no standardised clinical care for people with mild cognitive impairment (MCI) postdiagnosis. Social prescribing could potentially address this gap, as it enables people to access a range of non-clinical organisations and activities to support their health and wellbeing. However there has been little research on the role of social prescribing specifically for people living with MCI. This project entailed Patient and Public Involvement (PPI) in order to inform the development of future research in this area. We invited people with MCI to talk to us about their experiences of life with the condition and about any impact those memory problems had on their lives. An anonymised film of public contributors’ inputs was created and shared with a range of healthcare professionals, to prompt their reflections on the potential benefits and challenges of offering social prescribing to patients with MCI. There was consensus among public and professional contributors that social prescribing could offer opportunities for patients to address social isolation and to mitigate the impacts of MCI and linked conditions (e.g. anxiety) on cognitive and social functioning. We recommend as the next step a feasibility study to assess the acceptability and logistics of social prescribing among patients with MCI and the healthcare professionals who support them, on a larger scale and for a more sustained period than was possible in this preliminary work.
Young adults’ experiences of biographical retrogression whilst living with long COVID
During the early years (2020–2021) of the COVID‐19 pandemic, relatively little attention focused on experiences of people with long‐lasting symptoms, particularly young adults who were commonly understood to be invulnerable to serious effects of the virus. Drawing on narrative interviews with 15 adults in their twenties and living in the UK when they became ill with long COVID, we explore contextual factors which made their long COVID illness experience, and the wholescale disruption to their lives, challenging. We propose that existing adaptations of the concept of biographical disruption are problematic for this group, and instead suggest that ‘biographical retrogression’ may more accurately reflect these young adults’ experiences. For many of these young adults, their illness occurred at a crucial stage in forming or solidifying (presumed) adult trajectories. Secondly, the recency of long COVID did not allow for comparison with an existing ‘grand narrative’ of recovery, so the future course of their illness was not just unknown for them as individuals; there was no prognostic map against which to assess their symptoms. Thirdly, the lives of people with long COVID have been disrupted in the context of global societal disruption by the same virus, rendering their experiences both topical yet invisible.