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Getting anticipatory prescribing right in end-of-life care
There is a growing number of people who need access to high-quality endof life care in the home setting. This requires timely assessments of needs, ensuring good symptom management and recognising the roles undertaken by carers. For some patients, a range of medications may need to be put in place to relieve end-of-life symptoms, using ‘anticipatory prescribing’. District nurses must ensure that they acknowledge the patient’s voiced preferences and be mindful of the safety issues that arise with the supply of controlled drugs in the home. This article highlights the challenges faced by district nurses providing or dealing with anticipatory prescribing during end-of-life care.
Venous thromboembolism in patients with gout and the impact of hospital admission, disease duration and urate-lowering therapy
BACKGROUND: Systemic inflammatory diseases have been associated with increased risk of venous thromboembolism. We aimed to quantify the risk of venous thromboembolism in patients with gout, the most common inflammatory arthritis, and to assess how disease duration, hospital admission and urate-lowering therapy affect this risk. METHODS: We used data from the population-representative, England-based Clinical Practice Research Datalink linked to Hospital Episode Statistics, to identify incident gout cases between 1998 and 2017. We matched cases individually to 1 control without gout on age, gender, general practice and follow-up time. We calculated absolute and relative risks of venous thromboembolism, stratified by age, gender and hospital admission. Among those with gout, we assessed the risk of venous thromboembolism by exposure to urate-lowering therapy. RESULTS: We identified 62 234 patients with incident gout matched to 62 234 controls. Gout was associated with higher risk of venous thromboembolism compared with controls (absolute rate 37.3 [95% confidence interval (CI) 35.5–39.3] v. 27.0 [95% CI 25.5–28.9] per 10 000 person-years, adjusted hazard ratio [HR] 1.25, 95% CI 1.15–1.35). The excess risk in patients with gout, which was sustained up to a decade after diagnosis, was present during the time outside hospital stay (adjusted HR 1.30, 95% CI 1.18–1.42), but not during it (adjusted HR 1.01, 95% CI 0.83–1.24). The risk of venous thromboembolism was similar among patients prescribed versus not prescribed urate-lowering therapy (incidence rate ratio 1.04, 95% CI 0.89–1.23). INTERPRETATION: Gout was associated with higher risk of venous thromboembolism, particularly when the patient was not in hospital and regardless of exposure to urate-lowering therapy. Although the observed excess risk may not be sufficient to warrant preventive intervention, clinical vigilance may be required when caring for these patients.
Using out-of-office blood pressure measurements in established cardiovascular risk scores: a secondary analysis of data from two blood pressure monitoring studies
Background: Blood pressure (BP) measurement is increasingly carried out through home or ambulatory monitoring, yet existing cardiovascular risk scores were developed for use with measurements obtained in clinics. Aim: To describe differences in cardiovascular risk estimates obtained using ambulatory or home BP measurements instead of clinic readings. Design and setting: Secondary analysis of data from adults aged 25–84 years in the UK and the Netherlands without prior history of cardiovascular disease (CVD) in two BP monitoring studies: the Blood Pressure in different Ethnic groups (BP-Eth) study and the Home versus Office blood pressure MEasurements: Reduction of Unnecessary treatment Study (HOMERUS). Method: The primary comparison was Framingham risk calculated using BP measured as in the Framingham study or daytime ambulatory BP measurements. Statistical significance was determined using non-parametric tests. Results: In 442 BP-Eth patients (mean age = 58 years, 50% female [n = 222]) the median absolute difference in 10-year Framingham cardiovascular risk calculated using BP measured as in the Framingham study or daytime ambulatory BP measurements was 1.84% (interquartile range [IQR] 0.65–3.63, P = 0.67). In 165 HOMERUS patients (mean age = 56 years, 46% female) the median absolute difference in 10-year risk for daytime ambulatory BP was 2.76% (IQR 1.19–6.39, P<0.001) and only 8 out of 165 (4.8%) of patients were reclassified. Conclusion: Estimates of cardiovascular risk are similar when calculated using BP measurements obtained as in the risk score derivation study or through ambulatory monitoring. Further research is required to determine if differences in estimated risk would meaningfully influence risk score accuracy.
Anticipatory syringe drivers: a step too far
The recent Gosport War Memorial Hospital inquiry1 has increased UK patient, public and clinician awareness about syringe drivers for continuous subcutaneous delivery of opioids and other medications at the end of life.2 3 The inquiry found that at least 456 patients died where opioids had been prescribed and administered in unjustified doses, commonly via syringe drivers. In safe hands, syringe drivers facilitate appropriate and effective control of pain and other symptoms for patients who are no longer able to swallow or absorb oral medication, commonly when close to the end of life. The Gosport findings highlight the importance of ‘safe hands’. In an overstretched clinical climate in which clinicians are encouraged to plan ahead to optimise patient care, Gosport is a timely warning of the potential dangers of ‘anticipatory syringe drivers’ prescribed in anticipation of future symptoms at the end of life. The anticipatory prescribing and administration of opioids in Gosport hospital was highly anomalous and did not reflect standard palliative care practice. A serious category error was common; most people were in hospital for rehabilitation and were not terminally ill. The inquiry underlined that opioid delivery to the wrong people, at the wrong time, in the wrong doses, hastened many deaths. These unacceptable practices highlight the risks of prescribing anticipatory syringe drivers (along with excessive starting doses or wide dose ranges) to be started by third parties whose clinical assessment skills are unknown to the prescriber. This can result in syringe drivers being started, or doses increased, without skilled assessment and consideration of potentially reversible causes of symptoms and clinical deterioration. Anticipatory prescribing of injectable drugs ahead of need is regarded as best practice for the dying in the UK,4 5 ensuring that relevant drugs are available in the home ‘Just in Case’ they are needed for ‘as required’ or pro re nata (prn) injections in the future. There is a danger that this may be conflated with anticipatory syringe driver prescribing. The two should be regarded as distinct interventions. Commencing a syringe driver marks a more significant change in patient care. Syringe drivers should only be prescribed after symptoms have developed, drugs and doses being decided in the light of response to previous injection doses. Once started, it is rare to discontinue a syringe driver, and family members often perceive death occurs soon afterwards.6 7 Before starting a syringe driver, it is vital to explore patient and family understanding and wishes, to discuss the goals of treatment, including the possible effects of administered drugs and to advise that drugs given in doses appropriate for symptom control will not hasten death.8 9 These conversations require the skills of a compassionate, knowledgeable and experienced doctor or nurse. The authors are aware that on occasions nurses may ask doctors to prescribe an anticipatory syringe driver when it is evident that a patient's condition may deteriorate soon. This can avoid delays in getting drugs prescribed ‘out of hours’ by practitioners unfamiliar with the clinical situation.10 11 Recent local fieldwork by our team found that 2 of 13 general practitioners (GP) interviewed were comfortable with prescribing anticipatory syringe drivers at the end of life. They trusted community nursing colleagues to give these drugs appropriately. Conversely, other GPs thought that syringe drivers should only be prescribed in response to symptoms developing and after a doctor had made a face-to-face assessment to rule out any reversible symptoms. Guidance from the National Institute for Health and Care Excellence (NICE),4 Healthcare Improvement Scotland5 and the British Medical Association12 lacks clarity about anticipatory syringe drivers. NICE guidance simply advises ensuring suitable anticipatory medicines and routes are prescribed as early as possible. Recommendations: In the absence of appropriate guidelines, we recommend syringe drivers should only be prescribed after an experienced doctor or nurse prescriber has reviewed the patient in person in order to consider the causes of deterioration and associated symptoms, evaluate reversibility, establish a dying diagnosis and appraise the effectiveness of previously administered prn drug injections. There is also an urgent need for research to guide safe and effective practice in this area.
Secondary prevention of cardiovascular disease: Time to rethink stratification of disease severity?
Commentary: Cardiovascular disease (CVD) remains a leading cause of mortality globally,1 but with improved management, CVD is less fatal.2 However, this means a large proportion of the people are living with this long-term condition. As of 2015, 1 in 17 of the global population had CVD.3 There is lack of evidence across countries to truly quantify the significant economic consequences of this pressing global health issue.4 Overall, CVD is estimated to cost the European Union (EU) economy €210 billion a year: around 53% (€111 billion) due to healthcare costs, 26% (€54 billion) to productivity losses and 21% (€45 billion) to the informal care of people with CVD.5
Drinking in later life: a systematic review and thematic synthesis of qualitative studies exploring older people’s perceptions and experiences
Background alcohol presents risks to the health of older adults at levels that may have been ‘safer’ earlier in life. Moderate drinking is associated with some health benefits, and can play a positive role in older people’s social lives. To support healthy ageing, we must understand older people’s views with regards to their drinking. This study aims to synthesise qualitative evidence exploring the perceptions and experiences of alcohol use by adults aged 50 years and over. Methods a pre-specified search strategy was applied to Medline, PsychINFO, Scopus, Applied Social Sciences Index and Abstracts and Cumulative Index to Nursing and Allied Health Literature databases from starting dates. Grey literature, relevant journals, references and citations of included articles were searched. Two independent reviewers sifted articles and assessed study quality. Principles of thematic analysis were applied to synthesise the findings from included studies. Results of 2,056 unique articles identified, 25 articles met inclusion criteria. Four themes explained study findings: routines and rituals of older people’s drinking; self-image as a responsible drinker; perceptions of alcohol and the ageing body; and older people’s access to alcohol. Differences between gender, countries and social patterns are highlighted. Conclusions older people perceive themselves as controlled and responsible drinkers. They may not recognise risks associated with alcohol, but appreciate its role in sustaining social and leisure activities important to health and well-being in later life. These are important considerations for intervention development. Drinking is routinised across the life course and may be difficult to change in retirement.
Detection of familial hypercholesterolaemia: external validation of the FAMCAT clinical case-finding algorithm to identify patients in primary care
Background: The vast majority of individuals with familial hypercholesterolaemia in the general population remain unidentified worldwide. Recognising patients most likely to have the condition, to enable targeted specialist assessment and treatment, could prevent major coronary morbidity and mortality. We aimed to evaluate a clinical case-finding algorithm, the familial hypercholesterolaemia case ascertainment tool (FAMCAT), and compare it with currently recommended methods for detection of familial hypercholesterolaemia in primary care. Methods: In this external validation study, FAMCAT regression equations were applied to a retrospective cohort of patients aged 16 years or older with cholesterol assessed, who were randomly selected from 1500 primary care practices across the UK contributing to the QResearch database. In the main analysis, we assessed the ability of FAMCAT to detect familial hypercholesterolaemia (ie, its discrimination) and compared it with that of other established clinical case-finding approaches recommended internationally (Simon Broome, Dutch Lipid Clinic Network, Make Early Diagnosis to Prevent Early Deaths [MEDPED] and cholesterol concentrations higher than the 99th percentile of the general population in the UK). We assessed discrimination by area under the receiver operating curve (AUROC; ranging from 0·5, indicating pure chance, to 1, indicating perfect discrimination). Using a probability threshold of more than 1 in 500 (prevalence of familial hypercholesterolaemia), we also assessed sensitivity, specificity, positive predictive values, and negative predictive values in the main analysis. Findings: A sample of 750 000 patients who registered in 1500 UK primary care practices that contribute anonymised data to the QResearch database between Jan 1, 1999, and Sept 1, 2017, was randomly selected, of which 747 000 patients were assessed. FAMCAT showed a high degree of discrimination (AUROC 0·832, 95% CI 0·820–0·845), which was higher than that of Simon Broome criteria (0·694, 0·681–0·703), Dutch Lipid Clinic Network criteria (0·724, 0·710–0·738), MEDPED criteria (0·624, 0·609–0·638), and screening cholesterol concentrations higher than the 99th percentile (0·581, 0·570–0·591). Using a 1 in 500 probability threshold, FAMCAT achieved a sensitivity of 84% (1028 predicted vs 1219 observed cases) and specificity of 60% (443 949 predicted vs 745 781 observed non-cases), with a corresponding positive predictive value of 0·84% and a negative predictive value of 99·2%. Interpretation: FAMCAT identifies familial hypercholesterolaemia with greater accuracy than currently recommended approaches and could be considered for clinical case finding of patients with the highest likelihood of having hypercholesterolaemia in primary care.
Trends in survival after a diagnosis of heart failure in the United Kingdom 2000-2017: population based cohort study
Objectives: To report reliable estimates of short term and long term survival rates for people with a diagnosis of heart failure and to assess trends over time by year of diagnosis, hospital admission, and socioeconomic group. Design: Population based cohort study. Setting: Primary care, United Kingdom. Participants: Primary care data for 55 959 patients aged 45 and overwith a new diagnosis of heart failure and 278 679 age and sex matched controls in the Clinical Practice Research Datalink from 1 January 2000 to 31 December 2017 and linked to inpatient Hospital Episode Statistics and Office for National Statistics mortality data. Main outcome measures: Survival rates at one, five, and 10 years and cause of death for people with and without heart failure; and temporal trends in survival by year of diagnosis, hospital admission, and socioeconomic group. Results: Overall, one, five, and 10 year survival rates increased by 6.6% (from 74.2% in 2000 to 80.8% in 2016), 7.2% (from 41.0% in 2000 to 48.2% in 2012), and 6.4% (from 19.8% in 2000 to 26.2% in 2007), respectively. There were 30 906 deaths in the heart failure group over the study period. Heart failure was listed on the death certificate in 13 093 (42.4%) of these patients, and in 2237 (7.2%) it was the primary cause of death. Improvement in survival was greater for patients not requiring admission to hospital around the time of diagnosis (median difference 2.4 years; 5.3 v 2.9 years, P<0.001). There was a deprivation gap in median survival of 2.4 years between people who were least deprived and those who were most deprived (11.1 v 8.7 years, P<0.001). Conclusions: Survival after a diagnosis of heart failure has shown only modest improvement in the 21st century and lags behind other serious conditions, such as cancer. New strategies to achieve timely diagnosis and treatment initiation in primary care for all socioeconomic groups should be a priority for future research and policy.
Patients’ understanding of cellulitis and their information needs: a mixed-methods study in primary and secondary care
Background: Cellulitis is a painful infection of the skin and underlying tissues, commonly affecting the lower leg. Approximately one-third of people experience recurrence. Patients’ ability to recover from cellulitis or prevent recurrence is likely to be influenced by their understanding of the condition. Aim: To explore patients’ perceptions of cellulitis, and their information needs. Design and setting: Mixed-methods study comprising semi-structured, face-to-face interviews and a cross-sectional survey, recruiting through primary and secondary care, and advertising. Method: Adults aged ≥18 years with a history of cellulitis were invited to take part in a survey, qualitative interview, or both. Results: In all, 30 interviews were conducted between August 2016 and July 2017. Qualitative data highlighted a low awareness of cellulitis before the first episode, uncertainty about when it had been diagnosed, concern/surprise at the severity of cellulitis, and a perceived insufficient information provision. People were surprised that they had never heard of cellulitis and that they had not received advice or leaflets giving self-care information. Some sought information from the internet and found this confusing. A total of 240 surveys were completed (response rate 17%). These showed that, although many participants had received information on the treatment of cellulitis (60.0%, n = 144), they often reported receiving no information about causes (60.8%, n = 146) or prevention of recurrence (73.3%, n = 176). Conclusion: There is a need to provide information for people with cellulitis, particularly in regard to naming their condition, the management of acute episodes, and how to reduce the risk of recurrences.
Persistent unexplained physical symptoms: a prospective longitudinal cohort study in UK primary care
Background: Unexplained physical symptoms (UPS) are extremely common among primary care attenders, but little is known about their longer-term outcome. Aim: To investigate the persistence of somatic symptoms at 6 months among a cohort with multiple UPS, and identify prognostic factors associated with worsening symptom scores. Design and setting: Prospective longitudinal cohort study involving adults attending UK general practice in North and Central London between January and December 2013. Method: Consecutive adults attending nine general practices were screened to identify those with at least three UPS. Eligible participants completed measures of symptom severity (measured using the Patient Health Questionnaire Somatic Symptom Module [PHQ-15]), physical and mental wellbeing, and past health and social history, and were followed up after 6 months. Multivariable linear regression analysis was conducted to identify prognostic factors associated with the primary outcome: somatic symptom severity. Results: Overall, 245/294 (83%) provided 6-month outcome data. Of these, 135/245 (55%) reported still having UPS, 103/245 (42%) had symptoms still under investigation, and only 26/245 (11%) reported complete symptom resolution. Being female, higher baseline somatic symptom severity, poorer physical functioning, experience of childhood physical abuse, and perception of poor financial wellbeing were significantly associated with higher somatic symptom severity scores at 6 months. Conclusion: This study has shown that at 6 months few participants had complete resolution of unexplained somatic symptoms. GPs should be made aware of the likelihood of UPS persisting, and the factors that make this more likely, to inform decision making and care planning. There is a need to develop prognostic tools that can predict the risk of poor outcomes.
The elicitation and management of multiple health concerns in GP consultations
Objective: To describe the nature of patient concerns and to explore if, when and how they are addressed by GPs in the UK. Methods: Detailed coding and descriptive analysis of 185 video recordings from the EPaC study (Elicitation of Patient Concerns, EPaC) Results: An average of 2.1 concerns were raised per consultation and the most common concerns were musculoskeletal, administrative (e.g. test results and medication related issues), and skin symptoms. GPs who had been trained as part of the EPaC intervention to solicit for additional concerns in the opening phase of the consultation did so 92.6% of the time. In contrast, those in the control arm did so only 7% of the time. However, the particular formulation of the GP soliciting question does not seem to be associated with the likelihood of the patient volunteering an additional concern. Conclusions: GP consultations are complex encounters in which multiple concerns are dealt with across a wide range of disease areas. GPs can be trained to solicit for problems/concerns early in the consultation. Practice implications: Soliciting for additional concerns is not routinely done. But very brief training can substantially help in eliciting concerns early in the consultation, which may help with organising the consultation.
Assessing the severity of Type 2 diabetes using clinical data‐based measures: a systematic review
Aims: To identify and critically appraise measures that use clinical data to grade the severity of Type 2 diabetes. Methods: We searched MEDLINE, Embase and PubMed between inception and June 2018. Studies reporting on clinical data‐based diabetes‐specific severity measures in adults with Type 2 diabetes were included. We excluded studies conducted solely in participants with other types of diabetes. After independent screening, the characteristics of the eligible measures including design and severity domains, the clinical utility of developed measures, and the relationship between severity levels and health‐related outcomes were assessed. Results: We identified 6798 studies, of which 17 studies reporting 18 different severity measures (32 314 participants in 17 countries) were included: a diabetes severity index (eight studies, 44%); severity categories (seven studies, 39%); complication count (two studies, 11%); and a severity checklist (one study, 6%). Nearly 89% of the measures included diabetes‐related complications and/or glycaemic control indicators. Two of the severity measures were validated in a separate study population. More severe diabetes was associated with increased healthcare costs, poorer cognitive function and significantly greater risks of hospitalization and mortality. The identified measures differed greatly in terms of the included domains. One study reported on the use of a severity measure prospectively. Conclusions: Health records are suitable for assessment of diabetes severity; however, the clinical uptake of existing measures is limited. The need to advance this research area is fundamental as higher levels of diabetes severity are associated with greater risks of adverse outcomes. Diabetes severity assessment could help identify people requiring targeted and intensive therapies and provide a major benchmark for efficient healthcare services.
Adverse Events from Emollient Use in Eczema: A Restricted Review of Published Data
Atopic dermatitis/eczema is a chronic inflammatory skin condition, and emollients are the first-line treatment. Despite their widespread use, there is uncertainty about the frequency and type of adverse events associated with different emollients. We conducted a restricted review of published data on adverse events associated with emollient use in eczema. Medline (Ovid) was searched from inception (1946) to June 2018. All types of studies, with the exception of reviews, were included. Eligibility was assessed using a two-stage screening process against inclusion and exclusion criteria. References of all included papers were screened for any additional eligible papers. Data were subsequently extracted from all eligible publications. A limited body of data were found in the published data: 24 papers reported on adverse events with 29 different emollients (3 containing urea, 5 containing ceramide, 4 containing glycerol, 4 were herbal and 13 contained “other” ingredients). Interpretation of the results and comparison of the emollients were difficult due to poor reporting and missing data. Many publications contained no data at all on adverse events, and no study reported serious treatment-related adverse events for any emollient. The proportion of participants in the studies experiencing treatment-related adverse events varied between 2 and 59%. The most common adverse events were skin related and often mild. The range of participants experiencing non-treatment-related adverse events varied between 4 and 43%. From this restricted review, clinicians and patients can be reassured that the emollients studied appear to be generally safe to use. Better studies and reporting of adverse events associated with emollients in common use are needed.
A scholarship to foster future leaders in evidence based medicine
Editorial: The inaugural 2019 Doug Altman Scholarship at EBMLive in Oxford Doug Altman (1948-2018) was The BMJ’s chief statistician for over 20 years. His work on improving the execution and reporting of research made him a world leader in evidence based medicine and a distinguished role model. Doug helped researchers design and report good quality studies to answer important clinical questions. His editorial, “The scandal of poor medical research,” written in 1994 is essential reading for those new to evidence based medicine.1 Its call for “less research, better research, and research done for the right reasons” remains relevant today. His passion for teaching and mentoring makes him a source of inspiration for early career researchers.
Persistent unexplained physical symptoms: a prospective longitudinal cohort study in UK primary care
Background: Unexplained physical symptoms (UPS) are extremely common among primary care attenders, but little is known about their longer-term outcome. Aim: To investigate the persistence of somatic symptoms at 6 months among a cohort with multiple UPS, and identify prognostic factors associated with worsening symptom scores. Design and setting: Prospective longitudinal cohort study involving adults attending UK general practice in North and Central London between January and December 2013. Method: Consecutive adults attending nine general practices were screened to identify those with at least three UPS. Eligible participants completed measures of symptom severity (measured using the Patient Health Questionnaire Somatic Symptom Module [PHQ-15]), physical and mental wellbeing, and past health and social history, and were followed up after 6 months. Multivariable linear regression analysis was conducted to identify prognostic factors associated with the primary outcome: somatic symptom severity. Results: Overall, 245/294 (83%) provided 6-month outcome data. Of these, 135/245 (55%) reported still having UPS, 103/245 (42%) had symptoms still under investigation, and only 26/245 (11%) reported complete symptom resolution. Being female, higher baseline somatic symptom severity, poorer physical functioning, experience of childhood physical abuse, and perception of poor financial wellbeing were significantly associated with higher somatic symptom severity scores at 6 months. Conclusion: This study has shown that at 6 months few participants had complete resolution of unexplained somatic symptoms. GPs should be made aware of the likelihood of UPS persisting, and the factors that make this more likely, to inform decision making and care planning. There is a need to develop prognostic tools that can predict the risk of poor outcomes.
Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis
Background: The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. The evidence base to support this practice is unclear. Aim: To review the published evidence concerning anticipatory prescribing of injectable medications for adults at the end of life in the community. Design: Systematic review and narrative synthesis. Registered in PROSPERO: CRD42016052108, on 15 December 2016 (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=52108). Data sources: Medline, CINAHL, Embase, PsycINFO, Web of Science, Cochrane Library, King’s Fund, Social Care Online, and Health Management Information Consortium databases were searched up to May 2017, alongside reference, citation, and journal hand searches. Included papers presented empirical research on the anticipatory prescribing of injectable medications for symptom control in adults at the end of life. Research quality was appraised using Gough’s ‘Weight of Evidence’ framework. Results: The search yielded 5099 papers, of which 34 were included in the synthesis. Healthcare professionals believe anticipatory prescribing provides reassurance, effective symptom control, and helps to prevent crisis hospital admissions. The attitudes of patients towards anticipatory prescribing remain unknown. It is a low-cost intervention, but there is inadequate evidence to draw conclusions about its impact on symptom control and comfort or crisis hospital admissions. Conclusion: Current anticipatory prescribing practice and policy is based on an inadequate evidence base. The views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation. Further research is needed to investigate the impact of anticipatory prescribing on patients’ symptoms and comfort, patient safety, and hospital admissions.
A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life, and the possible role of the internet
Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face‐to‐face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi‐structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016–2017). Interviews were audio‐recorded, transcribed, and analysed using thematic analysis. An overarching theme of the “separation of worlds” (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction.
Using electronic health records to quantify and stratify the severity of type 2 diabetes in primary care in England: rationale and cohort study design
Introduction: The increasing prevalence of type 2 diabetes mellitus (T2DM) presents a significant burden on affected individuals and healthcare systems internationally. There is, however, no agreed validated measure to infer diabetes severity from electronic health records (EHRs). We aim to quantify T2DM severity and validate it using clinical adverse outcomes. Methods and analysis: Primary care data from the Clinical Practice Research Datalink, linked hospitalisation and mortality records between April 2007 and March 2017 for patients with T2DM in England will be used to develop a clinical algorithm to grade T2DM severity. The EHR-based algorithm will incorporate main risk factors (severity domains) for adverse outcomes to stratify T2DM cohorts by baseline and longitudinal severity scores. Provisionally, T2DM severity domains, identified through a systematic review and expert opinion, are: diabetes duration, glycated haemoglobin, microvascular complications, comorbidities and coprescribed treatments. Severity scores will be developed by two approaches: (1) calculating a count score of severity domains; (2) through hierarchical stratification of complications. Regression models estimates will be used to calculate domains weights. Survival analyses for the association between weighted severity scores and future outcomes—cardiovascular events, hospitalisation (diabetes-related, cardiovascular) and mortality (diabetes-related, cardiovascular, all-cause mortality)—will be performed as statistical validation. The proposed EHR-based approach will quantify the T2DM severity for primary care performance management and inform the methodology for measuring severity of other primary care-managed chronic conditions. We anticipate that the developed algorithm will be a practical tool for practitioners, aid clinical management decision-making, inform stratified medicine, support future clinical trials and contribute to more effective service planning and policy-making.
Use of primary care and other healthcare services between age 85 and 90 years: longitudinal analysis of a single-year birth cohort, the Newcastle 85+ study
Objective: To describe, using data from the Newcastle 85+ cohort study, the use of primary care and other healthcare services by 85-year-olds as they age. Design: Longitudinal population-based cohort study. Setting: Newcastle on Tyne and North Tyneside, UK. Participants: Community dwelling and institutionalised men and women recruited through general practices (n=845, 319 men and 526 women). Results: Contact was established with 97% (n=1409/1459) of eligible 85-year-olds, consent obtained from 74% (n=1042/1409) and 851 agreed to undergo the multidimensional health assessment and a general practice medical records review. A total of 845 participants had complete data at baseline for this study (319 male, 526 female), with 344 (118 male, 226 female) reinterviewed at 60 months. After adjusting for confounders, all consultations significantly increased over the 5 years (incidence rate ratio, IRR=1.03, 95% CI 1.01 to 1.05, P=0.001) as did general practitioner (GP) consultations (IRR=1.03, 95% CI 1.01 to 1.05, P=0.006). Significant increases were also observed in inpatient and day hospital use over time, though these disappeared after adjustment for confounders. Conclusions: Our study of primary, secondary and community care use by the very old reveals that, between the ages of 85 and 90 years, older people are much more likely to consult their GP than any other primary healthcare team members. With a rapidly ageing society, it is essential that both current and future GPs are appropriately skilled, and adequately supported by specialist colleagues, as the main healthcare provider for a population with complex and challenging needs.
Proactive approaches to identifying dementia and dementia risk; a qualitative study of public attitudes and preferences
Objectives: The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. Design: Qualitative study using task group methodology and thematic data analysis. Setting: Task groups were held either at the university (n=5) or at a carers’ centre (n=1). Participants: A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. Results: Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rather than specifically on dementia. Participants emphasised the need to ensure informed consent prior to use of proactive approaches and to provide appropriate support. They also suggested alternative approaches that could potentially facilitate the early detection of dementia or reduce risk at a population level. Conclusions: As international policy on dementia shifts towards a prevention agenda there is growing interest in identifying those at risk of developing dementia. This study provides useful insights into the acceptability of the use of such proactive approaches among the public. The introduction of proactive approaches to dementia identification raises complex practical and ethical issues, particularly in the context of low public understanding of dementia. The importance of better quality information about dementia (and the likelihood of developing dementia) and provision of psychological support for those undergoing risk assessment were highlighted.
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