Neil Small

Barriers to advance care planning in chronic obstructive pulmonary disease

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of ‘end of life’ within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy’s recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of ‘continuous palliation’.

Cohort Profile: The Born in Bradford multi-ethnic family cohort study

Bradford Institute for Health Research, Bradford Teaching Hospitals Foundation Trust, Bradford, UK, School of Health Studies, University of Bradford, Bradford, UK, Edinburgh Ethnicity and Health Research Group, Centre for Population Health Sciences, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK, School of Sport, Exercise and Health Sciences, Loughborough University, Leicestershire, UK, Medical Research Council Centre for Causal Analyses in Translational Epidemiology, School of Social and Community Medicine, University of Bristol, Bristol, UK, Paediatric Epidemiology Group, Centre for Epidemiology and Biostatistics, Leeds Institute of Genetics, Health and Therapeutics, Faculty of Medicine and Health, University of Leeds, Leeds, UK and Department of Health Sciences, University of York, York, UK

Dying trajectories in heart failure

Objectives: To explore dying trajectories in heart failure. Design: Prospective, longitudinal study. Setting: Sixteen GP surgeries in four demographically contrasting areas of the UK. Participants: A total of 27 heart failure patients, >60 years of age, who completed questionnaires for at least five time-points before death. Main outcome measures: Kansas City Cardiomyopathy Questionnaire Physical Limitation Scale. Results: No ‘typical’ dying trajectory could be identified, and only a minority of patients conformed to the theoretical trajectory of dying in heart failure. Conclusions: This study provides the first prospective data regarding physical decline prior to death in heart failure. Findings challenge current efforts to plan and deliver palliative care services on the basis of the theoretical heart failure dying trajectory.

A systematic review of the relationships between social capital and socioeconomic inequalities in health: a contribution to understanding the psychosocial pathway of health inequalities

IntroductionRecent research on health inequalities moves beyond illustrating the importance of psychosocial factors for health to a more in-depth study of the specific psychosocial pathways involved. Social capital is a concept that captures both a buffer function of the social environment on health, as well as potential negative effects arising from social inequality and exclusion. This systematic review assesses the current evidence, and identifies gaps in knowledge, on the associations and interactions between social capital and socioeconomic inequalities in health.MethodsThrough this systematic review we identified studies on the interactions between social capital and socioeconomic inequalities in health published before July 2012.ResultsThe literature search resulted in 618 studies after removal of duplicates, of which 60 studies were eligible for analysis. Self-reported measures of health were most frequently used, together with different bonding, bridging and linking components of social capital. A large majority, 56 studies, confirmed a correlation between social capital and socioeconomic inequalities in health. Twelve studies reported that social capital might buffer negative health effects of low socioeconomic status and five studies concluded that social capital has a stronger positive effect on health for people with a lower socioeconomic status.ConclusionsThere is evidence for both a buffer effect and a dependency effect of social capital on socioeconomic inequalities in health, although the studies that assess these interactions are limited in number. More evidence is needed, as identified hypotheses have implications for community action and for action on the structural causes of social inequalities.

Risk factors for congenital anomaly in a multiethnic birth cohort: an analysis of the Born in Bradford study

BACKGROUND Congenital anomalies are a leading cause of infant death and disability and their incidence varies between ethnic groups in the UK. Rates of infant death are highest in children of Pakistani origin, and congenital anomalies are the most common cause of death in children younger than 12 in this ethnic group. We investigated the incidence of congenital anomalies in a large multiethnic birth cohort to identify the causes of the excess of congenital anomalies in this community. METHODS We obtained questionnaire data from the mothers of children with one or more anomalies from the Born in Bradford study, a prospective birth cohort study of 13,776 babies and their families in which recruitment was undertaken between 2007 and 2011. Details of anomalies were prospectively reported to the study and we cross checked these details against medical records. We linked data for anomalies to maternal questionnaire and clinical data gathered as part of the Born in Bradford study. We calculated univariate and multivariate risk ratios (RRs) with 95% CIs for various maternal risk factors. FINDINGS Of 11,396 babies for whom questionnaire data were available, 386 (3%) had a congenital anomaly. Rates for congenital anomaly were 305·74 per 10,000 livebirths, compared with a national rate of 165·90 per 10,000. The risk was greater for mothers of Pakistani origin than for those of white British origin (univariate RR 1·96, 95% CI 1·56-2·46). Overall, 2013 (18%) babies were the offspring of first-cousin unions. These babies were mainly of Pakistani origin--1922 (37%) of 5127 babies of Pakistani origin had parents in first-cousin unions. Consanguinity was associated with a doubling of risk for congenital anomaly (multivariate RR 2·19, 95% CI 1·67-2·85); we noted no association with increasing deprivation. 31% of all anomalies in children of Pakistani origin could be attributed to consanguinity. We noted a similar increase in risk for mothers of white British origin older than 34 years (multivariate RR 1·83, 95% CI 1·14-3·00). Maternal education to degree level was protective (0·53, 95% CI 0·38-0·75), irrespective of ethnic origin. INTERPRETATION Consanguinity is a major risk factor for congenital anomaly. The risk remains even after adjustment for deprivation, and accounts for almost a third of anomalies in babies of Pakistani origin. High levels of educational attainment are associated with reduced risk in all ethnic groups. Our findings will be valuable in health promotion and public health, and to those commissioning antenatal, paediatric, and clinical genetic services. Sensitive advice about the risks should be provided to communities at increased risk, and to couples in consanguineous unions, to assist in reproductive decision making. FUNDING National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care programme.

Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients’ had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.

Exploring the care needs of patients with advanced COPD: An overview of the literature

Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this group. Publications revealed that patients with COPD have a high symptom burden that impacts on quality of life and social functioning. Information provision in COPD is often lacking and the implications of diagnosis and prognosis are not routinely discussed. The impact on families and carers is considerable, many patients have significant care requirements which can affect family relationships. Although patients with COPD have regular contact with health services, access to specialist services and palliative care is poor. This paper highlights the need for increased provision for palliative care in COPD, alongside dedicated education and training for health professionals, and continued research to identify the most appropriate ways of delivering this care.

Enhancing Patient-Professional Communication About End-of-Life Issues in Life-Limiting Conditions: A Critical Review of the Literature

CONTEXT The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. OBJECTIVES To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. METHODS A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. RESULTS Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. CONCLUSION Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

Postacute care for older people in community hospitals: a multicenter randomized, controlled trial.

OBJECTIVES: To compare the effects of community hospital care on independence for older people needing rehabilitation with that of general hospital care.

Effects of locality based community hospital care on independence in older people needing rehabilitation: randomised controlled trial

Abstract Objective To determine the effects on independence in older people needing rehabilitation in a locality based community hospital compared with care on a ward for elderly people in a district general hospital. Design Randomised controlled trial. Setting Care in a community hospital and district general hospital in Bradford, England. Participants 220 patients needing rehabilitation after an acute illness that required hospital admission. Interventions Patients were randomly allocated to a locality based community hospital or to remain within a department for the care of elderly people in a district general hospital. Main outcome measures Primary outcomes were Nottingham extended activities of daily living scale and general health questionnaire 28 (carer). Secondary outcomes were activities of daily living (Barthel index), Nottingham health profile, hospital anxiety and depression scale, mortality, destination after discharge, satisfaction with services, carer strain index, and carers satisfaction with services. Results The median length of stay was 15 days for both the community hospital and the district general hospital groups (interquartile range: community hospital 9-25 days; district general hospital 9-24 days). Independence at six months was greater in the community hospital group (adjusted mean difference 5.30, 95% confidence interval 0.64 to 9.96). Results for the secondary outcome measures, including care satisfaction and measures of carer burden, were similar for both groups. Conclusions Care in a locality based community hospital is associated with greater independence for older people than care in wards for elderly people in a district general hospital.