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Improving access to general practice for and with people with severe and multiple disadvantage
Background: People with severe and multiple disadvantage (SMD- combinations of homelessness, substance misuse, violence, abuse and poor mental health) have high health needs and poor access to primary care. Aim: To explore perceptions and experiences of improving access to general practice for people with SMD in healthcare staff and people with lived experience. Design and Setting: Bridging Gaps is a collaboration between healthcare staff, researchers, women with lived experience of SMD and a charity that supports them in a UK city. We co-produced a project to improve access to general practice for people with SMD, that was further developed with 3 inner city general practices. Method: We facilitated nine service improvement meetings at three general practices and formally observed six of these. We interviewed nine practice staff and four participants with lived experience. Three participants with lived experience and one staff member who supports them participated in a focus group. Data was analysed inductively and deductively using thematic analysis. Results: Enabling motivated general practice staff with time and funding opportunities, galvanised by lived experience involvement, resulted in service changes. These included: prioritising patients on an inclusion patient list with more flexible access, continuity from a care coordinator and micro-team, and an information sharing tool. The process and outcomes improved connections within and between general practices, support organisations and people with SMD. Conclusion: These co-designed strategies could be locally adapted and evaluated in other areas. Investing in this focused way of working may improve healthcare accessibility, health equity and staff wellbeing.
The Longitudinal Impact of Social Media Use on UK Adolescents' Mental Health: Longitudinal Observational Study
Background: Cross-sectional studies have found a relationship between social media use and depression and anxiety in young people. However, few longitudinal studies using representative data and mediation analysis have been conducted to understand the causal pathways of this relationship. Objective: This study aims to examine the longitudinal relationship between social media use and young people’s mental health and the role of self-esteem and social connectedness as potential mediators. Methods: The sample included 3228 participants who were 10- to 15-year-olds from Understanding Society (2009-2019), a UK longitudinal household survey. The number of hours spent on social media was measured on a 5-point scale from “none” to “7 or more hours” at the ages of 12-13 years. Self-esteem and social connectedness (number of friends and happiness with friendships) were measured at the ages of 13-14 years. Mental health problems measured by the Strengths and Difficulties Questionnaire were assessed at the ages of 14-15 years. Covariates included demographic and household variables. Unadjusted and adjusted multilevel linear regression models were used to estimate the association between social media use and mental health. We used path analysis with structural equation modeling to investigate the mediation pathways. Results: In adjusted analysis, there was a nonsignificant linear trend showing that more time spent on social media was related to poorer mental health 2 years later (n=2603, β=.21, 95% CI −0.43 to 0.84; P=.52). In an unadjusted path analysis, 68% of the effect of social media use on mental health was mediated by self-esteem (indirect effect, n=2569, β=.70, 95% CI 0.15-1.30; P=.02). This effect was attenuated in the adjusted analysis, and it was found that self-esteem was no longer a significant mediator (indirect effect, n=2316, β=.24, 95% CI −0.12 to 0.66; P=.22). We did not find evidence that the association between social media and mental health was mediated by social connectedness. Similar results were found in imputed data. Conclusions: There was little evidence to suggest that more time spent on social media was associated with later mental health problems in UK adolescents. This study shows the importance of longitudinal studies to examine this relationship and suggests that prevention strategies and interventions to improve mental health associated with social media use could consider the role of factors like self-esteem.
Physical rehabilitation for people with advanced dementia who fracture their hip – expert consensus process
Purpose: Hip fracture is common in older people – with prevalence even higher for people with dementia. Research often excludes people with dementia – especially those in the more advanced stages. Therefore, the most appropriate interventions remain unknown. The main aim of this study was to gain consensus about the core considerations needed to deliver a physical intervention for people with advanced dementia who fracture their hip. Materials and Methods: An expert consensus process was undertaken, using Nominal Group Technique, to explore the key considerations when delivering rehabilitation. Data collection was undertaken in January 2023 and involved an online group discussion followed by voting and off-line rating. Qualitative content analysis and quantitative analysis of consensus scoring was undertaken. An international group of seven highly specialised physiotherapists took part. Results: 59 statements were agreed following the process. Content analysis was used to categorise these statements according to the International Classification of Functioning, Disability and Health. Although consensus levels were high, there was disagreement in several areas. Conclusion: The statements provide an overarching understanding of the multidisciplinary expertise that is needed to effectively deliver rehabilitation interventions to this population. People with dementia require highly skilled and trained professionals, providing holistic and person-centred approaches to deliver rehabilitation interventions.
Family carers' administration of injectable medications at the end of life: a service evaluation of a novel intervention
Abstract Timely and safe administration of injectable medications for patients at home is vital in optimally managing distressing symptoms in the final days of life. This article discusses a service evaluation of family carers' (including close friends) administrating subcutaneous end-of-life medications. The procedure was not intended to become normal care, rather the exception when appropriate and needed, with 24/7 skilled support from community nursing and palliative care services. A service evaluation of the procedure was undertaken in rural and urban areas in the South East of England. The procedure ran over 6 months and used detailed processes with recruitment criteria to mitigate risk of harm. In total, 11 patients participated with their family carers, including five carers with experience in healthcare roles. Of the 11 family carers, 10 were able to administer injections safely with structured training and support in place. Patients received timely symptom relief and their family carers were able to support loved ones by administering injectable medications rapidly without waiting for a nurse to arrive. This was particularly welcomed in more rural areas where waiting times were greater due to the large geographical area covered and limited staff availability during out-of-hours periods. The findings informed a carefully monitored wider rollout and ongoing evaluation in adult community nursing services in the NHS Trust.
Feasibility of a placebo-controlled trial of antibiotics for possible urinary tract infection in care homes: a qualitative interview study
Abstract Background Diagnosis of suspected urinary tract infection (UTI) in care and nursing home residents is commonly based on vague non-localising symptoms (for example, confusion), potentially leading to inappropriate antibiotic prescription. The safety of withholding antibiotics in such cases could be addressed by a randomised controlled trial (RCT); however, this would require close monitoring of residents, and support from care home staff, clinicians, residents, and families. Aim To explore the views of residential care and nursing home staff (herein referred to as care home staff) and primary care clinicians on the feasibility and design of a potential RCT of antibiotics for suspected UTI in care home residents, with no localising urinary symptoms. Design & setting A qualitative interview study with primary care clinicians and care home staff in the UK. Method Semi-structured interviews with 16 care home staff and 11 primary care clinicians were thematically analysed. Results Participants were broadly supportive of the proposed RCT. The safety of residents was a priority and there was strong support for using the RESTORE2 (Recognise Early Soft Signs, Take Observations, Respond, Escalate) assessment tool to monitor residents; however, there were concerns about associated training requirements, especially for night and temporary staff. Effective communication (with residents, families, and staff) was deemed essential, and carers were confident that residents and families would be supportive of the RCT if the rationale was clearly explained and safety systems were robust. There were mixed views on a placebo-controlled design. The perceived additional burden was seen as a potential barrier, and the use of temporary staff and the out-of-hours period were highlighted as potential risk areas. Conclusion The support for this potential trial was encouraging. Future development will need to prioritise resident safety (especially in the out-of-hours period), effective communication, and minimising additional burden on staff to optimise recruitment.
Moderators of the effect of therapeutic exercise for knee and hip osteoarthritis: a systematic review and individual participant data meta-analysis
Summary Background Many international clinical guidelines recommend therapeutic exercise as a core treatment for knee and hip osteoarthritis. We aimed to identify individual patient-level moderators of the effect of therapeutic exercise for reducing pain and improving physical function in people with knee osteoarthritis, hip osteoarthritis, or both. Methods We did a systematic review and individual participant data (IPD) meta-analysis of randomised controlled trials comparing therapeutic exercise with non-exercise controls in people with knee osteoathritis, hip osteoarthritis, or both. We searched ten databases from March 1, 2012, to Feb 25, 2019, for randomised controlled trials comparing the effects of exercise with non-exercise or other exercise controls on pain and physical function outcomes among people with knee osteoarthritis, hip osteoarthritis, or both. IPD were requested from leads of all eligible randomised controlled trials. 12 potential moderators of interest were explored to ascertain whether they were associated with short-term (12 weeks), medium-term (6 months), and long-term (12 months) effects of exercise on self-reported pain and physical function, in comparison with non-exercise controls. Overall intervention effects were also summarised. This study is prospectively registered on PROSPERO (CRD42017054049). Findings Of 91 eligible randomised controlled trials that compared exercise with non-exercise controls, IPD from 31 randomised controlled trials (n=4241 participants) were included in the meta-analysis. Randomised controlled trials included participants with knee osteoarthritis (18 [58%] of 31 trials), hip osteoarthritis (six [19%]), or both (seven [23%]) and tested heterogeneous exercise interventions versus heterogeneous non-exercise controls, with variable risk of bias. Summary meta-analysis results showed that, on average, compared with non-exercise controls, therapeutic exercise reduced pain on a standardised 0–100 scale (with 100 corresponding to worst pain), with a difference of –6·36 points (95% CI –8·45 to –4·27, borrowing of strength [BoS] 10·3%, between-study variance [τ2] 21·6) in the short term, –3·77 points (–5·97 to –1·57, BoS 30·0%, τ2 14·4) in the medium term, and –3·43 points (–5·18 to –1·69, BoS 31·7%, τ2 4·5) in the long term. Therapeutic exercise also improved physical function on a standardised 0–100 scale (with 100 corresponding to worst physical function), with a difference of –4·46 points in the short term (95% CI –5·95 to –2·98, BoS 10·5%, τ2 10·1), –2·71 points in the medium term (–4·63 to –0·78, BoS 33·6%, τ2 11·9), and –3·39 points in the long term (–4·97 to –1·81, BoS 34·1%, τ2 6·4). Baseline pain and physical function moderated the effect of exercise on pain and physical function outcomes. Those with higher self-reported pain and physical function scores at baseline (ie, poorer physical function) generally benefited more than those with lower self-reported pain and physical function scores at baseline, with the evidence most certain in the short term (12 weeks). Interpretation There was evidence of a small, positive overall effect of therapeutic exercise on pain and physical function compared with non-exercise controls. However, this effect is of questionable clinical importance, particularly in the medium and long term. As individuals with higher pain severity and poorer physical function at baseline benefited more than those with lower pain severity and better physical function at baseline, targeting individuals with higher levels of osteoarthritis-related pain and disability for therapeutic exercise might be of merit.
Non-pharmaceutical interventions and risk of COVID-19 infection: survey of U.K. public from November 2020 – May 2021
Abstract Introduction Non-pharmaceutical interventions (NPIs), such as handwashing, social distancing and face mask wearing, have been widely promoted to reduce the spread of COVID-19. This study aimed to explore the relationship between self-reported use of NPIs and COVID-19 infection. Methods We conducted an online questionnaire study recruiting members of the UK public from November 2020 to May 2021. The association between self-reported COVID-19 illness and reported use of NPIs was explored using logistic regression and controlling for participant characteristics, month of questionnaire completion, and vaccine status. Participants who had been exposed to COVID-19 in their household in the previous 2 weeks were excluded. Results Twenty-seven thousand seven hundred fifty-eight participants were included and 2,814 (10.1%) reported having a COVID-19 infection. The odds of COVID-19 infection were reduced with use of a face covering in unadjusted (OR 0.17 (95% CI: 0.15 to 0.20) and adjusted (aOR 0.19, 95% CI 0.16 to 0.23) analyses. Social distancing (OR 0.27, 95% CI: 0.22 to 0.31; aOR 0.35, 95% CI 0.28 to 0.43) and handwashing when arriving home (OR 0.57, 95% CI 0.46 to 0.73; aOR 0.63, 95% CI: 0.48 to 0.83) also reduced the odds of COVID-19. Being in crowded places of 10–100 people (OR 1.89, 95% CI: 1.70 to 2.11; aOR 1.62, 95% CI: 1.42 to 1.85) and > 100 people (OR 2.33, 95% CI: 2.11 to 2.58; aOR 1.73, 95% CI: 1.53 to 1.97) were both associated with increased odds of COVID-19 infection. Handwashing before eating, avoiding touching the face, and cleaning things with virus on were all associated with increased odds of COVID-19 infections. Conclusions This large observational study found evidence for strong protective effects for individuals from use of face coverings, social distancing (including avoiding crowded places) and handwashing on arriving home on developing COVID-19 infection. We also found evidence for an increased risk associated with other behaviours, possibly from recall bias.
The relationship between reported daily nicotine dose from NRT and daily cigarette consumption in pregnant women who smoke in an observational cohort study
Abstract Introduction For nonpregnant people unable to quit smoking, the NHS recommends nicotine replacement therapy (NRT) for smoking reduction. This is not recommended during pregnancy due to concerns about higher nicotine intake than smoking alone. We investigated the relationship between daily nicotine dose from NRT and cigarette consumption reported by pregnant women receiving smoking cessation support. Methods We conducted secondary analysis of data from currently smoking pregnant women, recruited from antenatal clinics (Nottingham University Hospitals, UK) or online between June 2019–September 2020. Participants set a quit date, received a prototype NRT adherence intervention, and reported cigarettes per day (CPD) and daily NRT dose (mg) via smartphone app for 28 days. Results 388 women were screened, 32 (8%) were eligible and joined the study. 24 (75%) submitted 510 app reports in total. 17 (71%) reported smoking and using NRT concurrently on at least one day, with concurrent use reported on 109 (21%) of app reports. The relationship between daily NRT dose and CPD followed an exponential decay curve of approximately 7%. In multilevel repeated measures modelling using 4 linear splines (knots 17, 40, and 85 mg/NRT), significant fixed effects of daily NRT dose on CPD were observed for splines 1, 3, and 4. The strongest association was spline 1 (0–17 mg/NRT), where each 10 mg NRT increase was associated with a 0.6 CPD reduction (24% on average). Conclusions Among women in a cessation study, many smoked and used NRT concurrently; within these women, daily nicotine dose and heaviness of smoking were inversely related. Implications Findings have implications for the design of future interventions intended to reduce harm associated with smoking in pregnancy. They suggest using NRT alongside smoking in pregnancy could help some women reduce the number of cigarettes they smoke per day.
Ideas, concerns, expectations, and effects on life (ICEE) in GP consultations: an observational study using video-recorded UK consultations
Abstract Background Eliciting patients’ ideas, concerns, expectations, and whether a problem has an 'effect' on their life (ICEE), is a widely recommended communication technique. However, it is not known how frequently ICEE components are raised in UK GP consultations. Aim To assess the frequency of ICEE in routine GP consultations with adult patients and explore variables associated with ICEE. Design & setting An observational study was undertaken. It involved secondary analysis of a pre-existing archive of video-recorded, face-to-face GP consultations in the UK. Method Observational coding of 92 consultations took place. Associations were assessed using binomial and ordered logistic regression. Results Most consultations included at least one ICEE component (90.2%). The most common ICEE component per consultation was patient ideas (79.3%), followed by concerns (55.4%), expectations (51.1%), and then effects on life (42.4%). For all ICEE components patients more commonly initiated the ICEE dialogue, and in only three consultations (3.3%) did GPs directly ask patients about their expectations. Problems that were acute (odds ratio [OR] 2.98, 95% confidence interval [CI] = 1.36 to 6.53, P = 0.007) or assessed by GPs aged ≥50 years (OR 2.10, 95% CI = 1.07 to 4.13, P = 0.030) were associated with more ICEE components. Problems assessed later in the consultation (OR 0.60 per problem order increase, 95% CI = 0.41 to 0.87, P = 0.007) by patients aged ≥75 years (OR 0.40, 95% CI = 0.16 to 0.98, P = 0.046) and from the most deprived cohort (OR 0.39, 95% CI = 0.17 to 0.92, P = 0.032) were associated with fewer ICEE components. Patient ideas were associated with more patients being ‘very satisfied’ post-consultation (OR 10.74, 95% CI = 1.60 to 72.0, P = 0.014) and the opposite was true of concerns (OR 0.14, 95% CI = 0.02 to 0.86, P = 0.034). Conclusion ICEE components were associated with patient satisfaction and demographic variables. Further research is required to assess if the way ICEE are communicated affects these associations and other potential confounders.
Effectiveness of self-management interventions for long-term conditions in people experiencing socio-economic deprivation in high-income countries: a systematic review and meta-analysis
Abstract Background Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. Methods We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. Results The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (−0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. Conclusions Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals.
Trauma-informed co-production: Collaborating and combining expertise to improve access to primary care with women with complex needs
Abstract Introduction Health, social care, charitable and justice sectors are increasingly recognising the need for trauma-informed services that seek to recognise signs of trauma, provide appropriate paths to recovery and ensure that services enable people rather than retraumatise. Foundational to the development of trauma-informed services is collaboration with people with lived experience of trauma. Co-production principles may provide a useful framework for this collaboration, due to their emphasis on lived experience, and intent to address power imbalances and promote equity. This article aims to examine trauma-informed and co-production principles to consider the extent to which they overlap and explore how to tailor co-production approaches to support people who have experienced trauma. Methods Bridging Gaps is a collaboration between women who have experienced complex trauma, a charity that supports them, primary care clinicians and health researchers to improve access to trauma-informed primary care. Using co-production principles, we aimed to ensure that women who have experienced trauma were key decision-makers throughout the project. Through reflective notes (n = 19), observations of meetings (n = 3), interviews with people involved in the project (n = 9) and reflective group discussions on our experiences, we share learning, successes and failures. Data analysis followed a framework approach, using trauma-informed principles. Results Co-production processes can require adaptation when working with people who have experienced trauma. We emphasise the need for close partnership working, flexibility and transparency around power dynamics, paying particular attention to aspects of power that are less readily visible. Sharing experiences can retrigger trauma. People conducting co-production work need to understand trauma and how this may impact upon an individual's sense of psychological safety. Long-term funding is vital to enable projects to have enough time for the establishment of trust and delivery of tangible results. Conclusions Co-production principles are highly suitable when developing trauma-informed services. Greater consideration needs to be given as to whether and how people share lived experiences, the need for safe spaces, honesty and humility, difficult dynamics between empowerment and safety and whether and when blurring boundaries may be helpful. Our findings have applicability to policy-making, funding and service provision to enable co-production processes to become more trauma-informed. Public Contribution Bridging Gaps was started by a group of women who have experienced complex trauma, including addiction, homelessness, mental health problems, sexual exploitation, domestic and sexual violence and poverty, with a general practitioner (GP) who provides healthcare to this population, alongside a support worker from the charity One25, a charity that supports some of the most marginalised women in Bristol to heal and thrive. More GPs and healthcare researchers joined the group and they have been meeting fortnightly for a period of 4 years with the aim of improving access to trauma-informed primary care. The group uses co-production principles to work together, and we aim to ensure that women who have experienced trauma are key decision-makers throughout our work together. This article is a summary of our learning, informed by discussion, observations and interviews with members of the group.
Models of care and the role of clinical pharmacists in UK primary care for older adults: A scoping review protocol
Introduction There has been global investment of new ways of working to support workforce pressures, including investment in clinical pharmacists working in primary care by the NHS in the England. Clinical pharmacists are well suited to support older adults who have multiple long-term conditions and are on multiple medications. It is important to establish an evidence base for the role of clinical pharmacists in supporting older adults in primary care, to inform strategic and research priorities. The aim of this scoping review is to identify, map and describe existing research and policy/guidance on the role of clinical pharmacists in primary care supporting older adults, and the models of care they provide. Methods and analysis A scoping review guided by the Joanne Briggs Institute methodology for scoping reviews, using a three-step strategy. We will search Medline, CINAHL, Scopus, EMBASE, Web of Science, PSYCHInfo, and Cochrane for English language articles, from 2015 –present day. Grey literature will be searched using Grey Matters guidelines, the Index of Grey Literature and Alternative Sources and Resources, and Google keyword searching. References of all included sources will be hand searched to identify further resources. Using the Population, Concept and Context framework for inclusion and exclusion criteria, articles will be independently screened by two reviewers. The inclusion and exclusion criteria will be refined after we become familiar with the search results, following the iterative nature of a scoping review. Data will be extracted using a data extraction tool using Microsoft Excel and presented using a narrative synthesis approach. Ethics and dissemination Ethical approval is not required for this review. Review findings will be disseminated in academic conferences and used to inform subsequent qualitative research. Findings will be published and shared with relevant local and national organisations.
UK research data resources based on primary care electronic health records: review and summary for potential users
Objectives To describe the current landscape of UK electronic health record (EHR) databases and considerations of access and use of these resources relevant to researchers. Design & setting Narrative review Data sources Information was collected from the Health Data Research Innovation Gateway, publicly available websites and other published data and from key informants. Eligibility criteria Population-based open-access databases sampling EHRs across the whole population of one or more countries in the UK. Data extraction and synthesis We extracted and summarised published database characteristics and corroborated these with resource providers. Results were synthesised narratively. Results Nine large national primary care EHR data resources were identified and summarised. These resources are enhanced by linkage to other administrative data to a varying extent. Resources are mainly intended to support observational research though some can support experimental studies. There is considerable overlap of populations covered. Whilst all resources are accessible to bona fide researchers, access mechanisms, costs, timescales, and other considerations vary across databases. Conclusion Researchers are currently able to access primary care EHR data from several sources. Choice of data resource is likely to be driven by project needs and access considerations. The landscape of data resources based on primary care EHRs in the UK continues to evolve.
Getting the most from freedom of information requests as part of a realist review: Finding treasure or futile endeavour?
What is a realist review? Realist reviews have emerged in recent decades as a way of using multiple sources of data on specific programmes to explain what works, for whom, in what circumstances and why. They are theory driven, seeking to identify and elucidate causal factors through: a) the iterative development of a programme theory (mapping how an intervention operates and brings about change), and b) context-mechanism-outcome configurations (CMOCs) (statements about how context can activate certain mechanisms that result in specific outcomes). A broad range of data is often included in realist reviews; quantitative projects may show patterns that can be explored and explained using data from qualitative research. Realist reviews can also include items such as commentaries, editorials and evaluations, if they contain data that offer an insight into how an intervention is proposed to work or further understanding of parts of a CMOC. Where do FOI requests fit in? CCGs are a potentially ripe avenue for data that can be used in a realist review. Obtaining such information has been notoriously challenging, unless published online. Often an email request goes to a generic inbox, manned by people who may be unclear about where to redirect it. Such requests have become slightly easier to make in light of the Freedom of Information Act. Now the responsibility lies with the researcher doing the asking to be clear about the data they are seeking. We tried contacting CCGs as a route to finding information to use in a couple of realist reviews we are working on, due to a lack of relevant data found from searches of traditional bibliographic databases. The reviews We are part of a team producing a series of realist reviews looking at service redesign in primary care. One focuses on early visiting services; these entail delegating traditional GP led home visits to other professionals (e.g. advanced nurse practitioners, paramedics, emergency care practitioners or locum GPs). CCGs were asked whether and how this service was operationalised within their practice, including implementation processes such as management of patient access, workforce recruitment and cost implications. Service evaluations were also requested. The other review is looking at care navigation, whereby people are supported to locate and access services, often in the voluntary and community sector, which can help address non-medical problems (e.g. loneliness, bereavement, housing problems) that have an impact on health and wellbeing. We invited CCGs to let us know whether this type of service was being provided in their area and, if so, who was providing it, for which patients and whether such services had been evaluated. Procedural issues We had 195 CCGs to contact. There is often one central email address for multiple regions, which is not always made clear online. It can be helpful, therefore, to group CCGs by region, rather than alphabetically, to cross-check points of contact. For example, there is one central email for all CCGs based in North London. By identifying an email address covering several CCGs, we could send one request, outlining precisely where and from whom the information was required. Not all CCGs had a designated FOI email address (e.g. a few had online forms to be completed with requested information). We recorded when this was the case, to be transparent in how information was accessed. We found that staggering requests in batches (of 30-40) every couple of days was necessary, to stop our email inbox from becoming unwieldy with responses. We learnt that when making requests alongside other tasks, it can be difficult to track responses (e.g. in an Excel spreadsheet) when a large volume of requests is sent at the same time. Staggering requests enabled us to log FOI reference numbers against the relevant CCG, which aided both the tracking of replies and ensured the relevant information was to hand when no reply was forthcoming. It was important within requests to outline clearly the nature of the service of interest. This can include the different names it might be labelled as and whether it tends to be operated within or outside of typical working hours. We included, in our requests, a brief paragraph defining the type of service we wished to learn about from each CCG. What information did we get back? The early visiting services review received a response from 184 CCGs. Many of these responses were brief, stating that the CCG did not commission the service we were requesting information on. 46 CCGs were able to reply providing some detail on the service. Given the newness of this intervention, many providers had not yet undertaken formal evaluations. Four additional documents were provided, one being a formal evaluation. This information fell under copyright protection and would require copyright permission to be published in digital form. Hence, retrieving information on early visiting services in this instance did not provide much additional data that was useful to our review. However, it did allow for some meaningful connections to be made with commissioners; several individuals at director level expressed an interest in our conclusions and may, in the future, be able to act as avenues for dissemination. For the care navigators review, we received responses from all but 2 CCGs. Another 29 stated they did not hold requested information and 2 returned unclear replies. This meant we received usable data from 162 CCGs, which has provided a perspective on the different ways in which care navigation is being implemented across England. Furthermore, as part of the responses, we received 31 evaluations that we had not identified from our previous online searches. We are in the process of working with these data, which we envisage will help us refine and strengthen CMOCs. Hence, sending out a FOI request, in this case, was worthwhile in deriving new data for the review. Conclusion Realist reviews incorporate broad searches for literature. Relevant documents may not always be listed on bibliographic databases, especially when looking at an area such as service redesign incorporating new interventions. We wondered how useful it would be to make a FOI request to CCGs in terms of finding material that could inform our understanding and development of CMOCs. The answer seems to be it depends on the area being explored (e.g. its newness versus established programme), how far CCGs see it as part of their remit and their ability to provide information that is not commercially sensitive. Deciding to make a FOI request may have to be balanced against the time this work takes to administer (e.g. devising and piloting the questions to ask, finding email addresses and sending out requests, tracking returns using Excel and dispatching reminders when required). However, it may also produce unintended outcomes such as meaningful connections that extend a researcher’s network for stakeholder engagement and dissemination avenues.
Progression of stroke risk in patients aged <65 years diagnosed with atrial fibrillation: a cohort study in general practice
Background As a result of new technologies, atrial fibrillation (AF) is more likely to be diagnosed in people aged <65 years. Aim To investigate the risk of someone diagnosed with AF aged <65 years developing an indication for anticoagulation before they reach 65 years. Design and setting Population-based cohort study of patients from English practices using the Clinical Practice Research Datalink, a primary care database of electronic medical records. Method The study included patients aged <65 years newly diagnosed with AF. The CHA2DS2-VASc score was derived at time of diagnosis based on patients’ medical records. Patients not eligible for anticoagulation were followed up until they became eligible or turned 65 years old. The primary outcome of interest was development of a risk factor for stroke in AF. Results Among 18 178 patients aged <65 years diagnosed with AF, 9188 (50.5%) were eligible for anticoagulation at the time of diagnosis. Among the 8990 patients not eligible for anticoagulation, 1688 (18.8%) developed a risk factor during follow-up before reaching 65 years of age or leaving the cohort for other reasons, at a rate of 6.1 per 100 patient-years. Hypertension and heart failure were the most common risk factors to occur, with rates of 2.65 (95% CI = 2.47 to 2.84) and 1.58 (95% CI = 1.45 to 1.72) per 100 patient-years, respectively. The rate of new diabetes was 0.95 (95% CI = 0.85 to 1.06) per 100 patient-years. Conclusion People aged <65 years with AF are at higher risk of developing hypertension, heart failure, and diabetes than the general population, so may warrant regular review to identify new occurrence of such risk factors.
Why do people choose not to take part in screening? Qualitative interview study of atrial fibrillation screening nonparticipation
Introduction While screening uptake is variable, many individuals feel they ‘ought’ to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. Methods We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population-based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. Results Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary—something they could legitimately decline. Conclusion Nonparticipants were not resistant to engaging in health-promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacy and utility of this screening shaped their decision not to take part. Patient or Public Contribution The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g., one is a co-applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions.
Protocol for the mixed methods, Managing young people (aged 16–25) with Attention deficit hyperactivity disorder in Primary care (MAP) study: mapping current practice and co-producing guidance to improve healthcare in an underserved population
Attention deficit hyperactivity disorder (ADHD) is the most common neurodevelopmental disorder in children and adolescents, with an average worldwide prevalence of 5%. Up to 40% of young people continue to experience symptoms into adulthood. Young people with ADHD experience poorer outcomes than their peers across multiple domains, with treatment shown to reduce these risks. Primary care practitioners play an important role in healthcare provision for this group in the UK. However, many feel unsure about how best to provide support, reporting prescribing concerns and need for more evidence-based guidance. A lack of national data on primary care provision hinders efforts to improve access to care and optimise outcomes. This mixed-methods study aims to provide evidence that may be used to improve primary care services for young people aged 16–25 years with ADHD.
Temporal trends in eating disorder and self-harm incidence rates among adolescents and young adults in the UK in the 2 years since onset of the COVID-19 pandemic: a population-based study
Background Self-harm and eating disorders share multiple risk factors, with onset typically during adolescence or early adulthood. We aimed to examine the incidence rates of these psychopathologies among young people in the UK in the 2 years following onset of the COVID-19 pandemic. Methods We conducted a population-based study using the primary care electronic health records of patients aged 10–24 years in the UK Clinical Practice Research Datalink (CPRD). The observation period was from Jan 1, 2010, to March 31, 2022. We calculated the monthly incidence rates of eating disorders and self-harm according to the first record of each outcome. On the basis of antecedent trends between January, 2010, and February, 2020, negative binomial regression models were fitted to predict monthly incidence rates after the pandemic began in March, 2020. Percentage differences between observed and expected incidence were calculated to indicate changes since the onset of the pandemic, with stratification by sex, age, and deprivation quintile. Findings The primary care health records of 9 184 712 patients aged 10–24 years (4 836 226 [52·7%] female patients and 4 348 486 [47·3%] male patients; n=1881 general practices) were included for analysis. The incidence rates of eating disorders and self-harm among girls were higher than expected between March 1, 2020, and March 31, 2022. The observed incidence of eating disorders was 42·4% (95% CI 25·7–61·3) higher than expected for girls aged 13–16 years, and 32·0% (13·3–53·8) higher than expected for girls aged 17–19 years, whereas other age groups showed little difference between observed and expected incidence. Similarly, the increase in self-harm incidence was driven by girls aged 13–16 years, for whom the observed incidence was 38·4% (20·7–58·5) higher than expected. By contrast, among boys in all age groups, the incidence rates of eating disorders and self-harm were lower than, or close to, the expected rates. Among boys, the observed incidence of eating disorders was 22·8% (9·2–34·4) lower than expected, and the observed incidence of self-harm was 11·5% (3·6–18·7) lower than expected. The estimated increases in eating disorder and self-harm incidence among girls aged 13–16 years were largely attributable to increases within less deprived communities. Interpretation Although causes are uncertain, increased incidence of eating disorder diagnoses and self-harm among teenage girls in the UK during the first 2 years of the COVID-19 pandemic highlight an urgent need for intervention. Early identification of mental health difficulties by primary care clinicians is necessary. Timely access to treatments and sufficient support from general practitioners and mental health services needs to be available to manage presenting problems and to prevent exacerbations of conditions.
Management of asthma in primary care in the changing context of the COVID-19 pandemic: a qualitative longitudinal study with patients
Abstract Background: The COVID-19 pandemic dramatically affected asthma monitoring in primary care. Yet, patients’ views and experiences of managing their asthma and seeking help from primary care during the pandemic have not been explored. Aim: To investigate patients’ experiences of asthma management in the community during the COVID-19 pandemic. Design and setting: A qualitative longitudinal study using semi-structured interviews with asthma patients usually managed in primary care. Method: Interviews were audio recorded, transcribed and analysed using inductive temporal thematic analysis and trajectory approach. Results: Forty-six interviews were conducted with 18 asthma patients over eight months that covered contrasting stages of the pandemic. Patients felt less vulnerable as the pandemic subsided but the process of making sense of risk was dynamic and influenced by multiple factors. Patients relied on self-management strategies but felt that routine asthma reviews should still have been conducted during the COVID-19 pandemic and highlighted limited opportunities to discuss their asthma with health care professionals. Patients with well controlled symptoms felt that remote reviews were largely satisfactory but still felt that face to face reviews were necessary for certain aspects such as physical examination and patient-led discussion of sensitive or broader issues associated with asthma including mental health. Conclusions: The dynamic nature of patients’ perception of risk throughout the pandemic highlighted the need for a greater clarity regarding patients’ personal risk. Having opportunity to discuss their asthma is important to patients even during periods when access to face to face consultations in primary care is more restricted than usual.
Adherence to limiting weight-bearing activity in patients with diabetic foot ulcers: A qualitative study
Abstract Patients with diabetic foot ulcers are advised to limit weight-bearing activity for ulcers to heal. Patients often disregard this advice although the reasons are not yet fully understood. This study explored (1) patients' experiences of receiving the advice and (2) factors influencing adherence to the advice. Semi-structured interviews were conducted with 14 patients with diabetic foot ulcers. Interviews were transcribed and analysed using inductive thematic analysis. Advice regarding limiting weight-bearing activity was described by patients as directive, generic and conflicting with other priorities. Rapport, empathy and rationale supported receptivity to the advice. Barriers and facilitators to limiting weight-bearing activity included demands of daily living, enjoyment of exercise, sick/disabled identity and burden, depression, neuropathy/pain, health benefits, fear of negative consequences, positive feedback, practical support, weather and active/passive role in recovery. It is important that healthcare professionals pay attention to how limiting weight-bearing activity advice is communicated. We propose a more person-centred approach in which advice is tailored to individuals' specific needs with discussion around patient priorities and constraints.