Individuals who lived alone or with an unpaid carer approaching the end of life at 2001 and 2011 census in Scotland

The census provides invaluable information on Scotland’s population and linking it to other data enables analysis of specific groups to inform policy. The following briefing provides key findings relating to the availability of carers at home for those at the end of life

End of Life Care in Scotland: Trends in the Population in Need of Palliative Care

Background Estimation of population-wide palliative care needs is crucial for end-of-life care planning, and literature around it has grown in the last years. However, no estimates have yet been published for Scotland. Objectives This paper provides estimates of how many people require palliative care in Scotland and describes changes in the composition of this subpopulation. What are their living arrangements? How have their medical conditions, health service use, and health trajectories changed? Methods (including data) The analysis is based on linked hospital records, death records, and Scottish Census data from 2001/02 and 2011/12. The palliative care estimation method by Murtagh et al. is utilised, as well as the illness trajectories distinguished by Murray et al. Comparative cross-sectional descriptive statistics are provided. Findings While a recent paper suggests that palliative care need in England/Wales has increased from 72.5% in 2006 to 74.9% in 2014, the share of people with a palliative care need among all deaths in Scotland has decreased from 80.6% to 78.3% in the period of this study. The share of people aged 85+ rose from 26.6% to 31.4%, and we observe a doubling of cases with prolonged dwindling at the end of their life. Despite their high need for care, 4 in 5 people lived in a private household in their last year of life, and 1 in 3 people lived alone. Conclusions Our findings suggest a change in the volume of care need and in the types of care required. They have strong implications for care providers

The dynamics of the nursing and midwifery professions: Initial findings from analysis of longitudinal registrant data

Objectives To ascertain geographical differences in retention of nurses and midwives across the United Kingdom using registrant data. Methods The Nursing and Midwifery Council (NMC) are responsible for holding a register of all nurses and midwives in the United Kingdom. Registrants are required to revalidate every three years. Linking together resulting data creates a longitudinal dataset that follows registrants over time. The NMC is providing anonymised data through the ONS Safe Researcher Service (SRS). Data sharing agreements have been signed off and data is in process of being ingested by ONS. Initial analysis will focus on geographical differences in retention by for nurses by field of practice (adult, mental health, children, and learning disability) and midwifery. Results There are estimated to be around 750 thousand nurses and midwives currently registered. Processes used to take this work forward will be described including public and stakeholder engagement. Early findings will be presented comparing demographic profiles of the professions and, for nursing, fields of practice in 2018 and 2021. Cox proportional hazard models will enable comparison of geographical differences in retention between England, Scotland, Wales, and Northern Ireland. Conclusion Registrant data provides a basis that can inform policy. This is especially important given current challenges with regard to recruitment and retention in the nursing and midwifery professions. Future work will be outlined that will utilise registrant data including linkage to other administrative and census data sources

Were people who died at home less likely to attend hospital at the end of life during the Covid pandemic?

This work explores whether those approaching the end of life were less likely to go to hospital during the covid-19 pandemic

Assessment of causal link between psychological factors and symptom exacerbation in inflammatory bowel disease:a protocol for systematic review of prospective cohort studies

Background Inflammatory bowel disease is an idiopathic chronic disease that affects around 28 million people worldwide. Symptoms are distressing and have a detrimental effect on patients’ quality of life. A possible link between exacerbation of symptoms and psychological factors has been suspected but not established. Previous reviews concerned with this link had conceptual and methodological limitations. In this paper we set out a protocol that lays the foundations for a systematic review that will address these shortcomings. The aim of this review is to provide researchers and clinicians with clarity on the role of psychological factors in inflammatory bowel disease symptom exacerbation.Method/design We will identify all original, published, peer reviewed studies relevant to the topic and published in English from inception to November 2012. The databases MEDLINE, EMBASE, CINAHL and PsychINFO will be systematically searched. The search terms will include: inflammatory bowel disease, Crohn’s disease, ulcerative colitis, psychological stress, mental stress, life stress, family stress, hassles, social stress, coping, mood disorders, anxiety and depression in sequential combinations.Studies will be screened according to predetermined inclusion and exclusion criteria by two reviewers. We will include clinical prospective cohort studies of all human participants aged 18 years or over with a diagnosis of inflammatory bowel disease. All eligible papers will be independently and critically appraised using the Critical Appraisal Skills Programme (CASP) tool by two reviewers. Two reviewers will independently extract and synthesise data from the studies using a predefined data extraction sheet. Disagreements will be resolved by discussion between reviewers and a third party will be consulted if agreement is not reached. Synthesised data will be analysed using Bradford Hill criterion for causality. If data permits, meta-analysis will be performed.Discussion This study will provide the most comprehensive review and synthesis of current evidence around the link between psychological factors and symptom exacerbation in inflammatory bowel disease. Results will inform clinicians in appropriate intervention development for this patient group that would reduce symptom exacerbation and therefore improve patients’ quality of life

The use of mindfulness-based cognitive therapy for improving quality of life for inflammatory bowel disease patients:study protocol for a pilot randomised controlled trial with embedded process evaluation

Background: Inflammatory bowel disease (IBD) is a chronic condition with an unpredictable disease course. Rates of anxiety and depression among IBD patients in relapse (active disease symptoms) as well as in remission are higher than in the general population. Previous studies suggest that the prolonged effect of pain, anxiety, distress and depression have a detrimental effect on patients’ quality of life (QoL). Poor QoL in itself is associated with further symptom relapse. Mindfulness based cognitive therapy (MBCT) is a psychological group intervention that has the potential to improve QoL. When used in other chronic conditions, it demonstrated reduced negative effect from pain and psychological factors at completion of an 8-week MBCT course. The effect of MBCT has never been researched in IBD. The aim of this study is to obtain the information required to design a full scale randomised controlled trial (RCT) that will examine the effectiveness of MBCT in improving quality of life for IBD patients.Methods/Design: This is an exploratory RCT with embedded process evaluation. Forty IBD patients will be recruited from NHS outpatient gastroenterology clinics and will be randomised to either a MBCT (intervention) group or to await-list (control) group. All participants will undergo 16 h of structured group training over an 8-week period, with the control group starting 6 months later than the intervention group. Primary outcomes are recruitment, completion/retention rates and adherence and adaptation to the MBCT manual for IBD patients. The secondary outcome is to assess the feasibility of collecting reliable and valid data on proposed outcome measures such as quality of life, anxiety, depression, disease activity and mindful awareness. The process evaluation will use a survey and focus groups to assess the acceptability of the intervention and trial procedures for IBD patients.Discussion: The outcomes of this study will help define the barriers, uptake and perceived benefits of MBCT program for IBD patients. This information will enable the design of a full-scale study assessing the effect of MBCT on quality of life for IBD patients

Berberine for the treatment of hypertension: a systematic review

BackgroundHypertension is the highest risk factor for disease globally. One popular therapy is berberine.MethodsThe review followed the protocol PRISMA-P, and is reported according to the related PRISMA statement. Study quality was assessed using the SIGN methodology.ResultsFive randomised and two non-randomised controlled trials were included with 614 participants. All provided blood pressure data, but none measured cardiovascular events or long‐term adverse events. Studies were highly heterogeneous in experimental intervention, comparator intervention, length to follow-up, participants’ diagnosis, and setting.ConclusionsThe evidence around berberine effect on blood pressure is limited, of low quality, and ultimately inconclusive. Clinicians should be aware that the evidence from randomised trials is not sufficient to establish berberine effectiveness and safety in the treatment of hypertension, and they should balance these findings with the long history of berberine use in the Eastern world. Researchers should improve the standard of designing and reporting studies

Research note – barriers and solutions to linking and using health and social care data in Scotland

Integration of health and social care will require integrated data to drive service evaluation, design, joint working and research. We describe the results of a Scottish meeting of key stakeholders in this area. Potential uses for linked data included understanding client populations, mapping trajectories of dependency, identifying at risk groups, predicting required capacity for future service provision, and research to better understand the reciprocal interactions between health, social circumstances and care. Barriers to progress included lack of analytical capacity, incomplete understanding of data provenance and quality, intersystem incompatibility and issues of consent for data sharing. Potential solutions included better understanding the content, quality and provenance of social care data; investment in analytical capacity; improving communication between data providers and users in health and social care; clear guidance to systems developers and procurers; and enhanced engagement with the public. We plan a website for communication across Scotland on health and social care data linkage, educational resources for front line staff and researchers, plus further events for training and information dissemination. We believe that these processes hold lessons for other countries with an interest in linking health and social care data, as well as for cross-sector data linkage initiatives in general.</p

Palliative care, unpaid care and deprivation in Scotland: a study using census and vital registration data.

Approach The analysis was based on a linkage of the Scottish 2011 census and death registration records where deaths had occurred within 12 months of the decennial census. Areal deprivation used the Scottish Index of Multiple Deprivation, a widely used indicator that uses administrative data to rank areas by degree of deprivation. Palliative care needs were assessed using a validated approach that utilizes ICD10 codes from death registrations. Availability of unpaid care was assessed using place of residence at point of census and indication of other people resident in the same household. Results There were 52,553 death records of which 46,473 were for people aged 18 years or older at census and had matched census records. Deaths with palliative care needs were highest in the least deprived areas, though proportions were high regardless of deprivation ranging from 81.2% of deaths in the least deprived to quintile to 76.0% in the most deprived. Given the higher number of deaths in the most deprived areas, numbers of deaths were spread evenly across quintiles. In contrast, people approaching the end of life at point of census were more likely to live alone if resident in the most deprived quintile at point of census (40.8% vs 26.5%). Conclusion Palliative care needs are high regardless of levels of deprivation. However, it may be that those residing in more deprived areas not only have fewer financial resources to cope but also have lower recourse to support within the household

Impact of area deprivation on the cardiac mortality in the UK between 1991 and 2010: evidence from a population-based longitudinal study

Aim: Evidence from longitudinal studies on the influence of area deprivation in cardiac mortality is limited. We aimed to examine the impact of area deprivation on cardiac mortality in a large representative Scottish population. We also examined differences between women and men. Methods: Retrospective analysis was performed by using linked data from Scottish Longitudinal Study from 1991-2010. The main exposure variable was socioeconomic status (SES) using the Carstairs deprivation scores, a composite score of area-level factors. Cox proportional-hazards models were constructed to evaluate the hazard ratios (HRs) and 95% confidence intervals (CIs) for cardiac mortality and all-cause mortality associated with area-based deprivation. Subgroup analyses were stratified by sex. Results: In a representative population of 217,965 UK adults, a total of 58,770 deaths occurred over a median of 10 years of follow-up period. The risk of cardiac mortality and all-cause mortality showed a consistent graded increased across the deprived groups. Compared to the least deprived group, the adjusted HR of cardiac mortality in the most deprived group was 1.27 (1.15-1.39,