Saffron Karlsen

A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer.

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

The Social Functioning Questionnaire: a rapid and robust measure of perceived functioning.

Background: The Social Functioning Questionnaire (SFQ), an eight-item selfreport scale (score range 0–24), was developed from the Social Functioning Schedule (SFS), a semi-structured interview which has been used primarily with non-psychotic patients and has good test-retest and inter-rater reliability as well as construct validity. The SFQ was developed following the need for a quick assessment of perceived social function. Aims: To give further details of old and new data sets from studies involving over 4000 subjects assessed with the SFQ illustrating its epidemiological and clinical associations. Method: New data were analysed from a national epidemiological study, a comparison of key-worker and subject versions of the SFQ, and reanalysis of data from three earlier clinical studies, of psychiatric emergencies, general practice psychiatric patients and those with recurrent psychotic illnesses. These data were examined further to determine their range, their relationship to other clinical measures, and change over time in clinical trials. Results: The population mean score in 4164 subjects was 4.6 and the data from all studies suggested that a score of 10 or more indicated poor social functioning. Those presenting as psychiatric emergencies had the poorest social function (mean 11.4) and psychiatric patients from general practice the best function (mean 7.7) of the clinical populations. The eight item scores had a normal distribution in psychiatric populations and a skewed one in a normal population; scores were relatively stable over the short (weeks) and long-term (months), and were high in the presence of acute mental health disturbance and personality disorder, giving support to the validity of the scale. The results from a UK sample of a randomly selected population specifically weighted for ethnic minorities showed similar social function across groups.

How do cancer patients who die at home differ from those who die elsewhere

Our objective was to investigate how cancer patients who die at home differ from those who do not. A postbereavement survey of 229 people who registered the death of a random sample of cancer deaths in an inner London health authority was conducted. It was found that a fifth of patients (21%) died in their own home. Overall, 38% were reported to have expressed a preference for place of death, 73% of whom wanted to die at home. Only 58% achieved this. Having special equipment and stating a preference for place of death was associated with an increased likelihood of dying at home; using social and health services for social care was associated with a decreased likelihood of so doing. It was concluded that, as in previous studies, most patients who expressed a preference wanted a home death, but nearly half did not achieve this. Recognition of a preference for home death, providing the motivation to ‘stick it out’ at home, and adequate community support to provide the practical means to fulfil the preference, appear to be crucial in the achievement of a home death for all who desire it.

The relationship between maternal education and mortality among women giving birth in health care institutions: Analysis of the cross sectional WHO Global Survey on Maternal and Perinatal Health

BackgroundApproximately one-third of a million women die each year from pregnancy-related conditions. Three-quarters of these deaths are considered avoidable. Millennium Development Goal five calls for a reduction in maternal mortality and the establishment of universal access to high quality reproductive health care. There is evidence of a relationship between lower levels of maternal education and higher maternal mortality. This study examines the relationship between maternal education and maternal mortality among women giving birth in health care institutions and investigates the association of maternal age, marital status, parity, institutional capacity and state-level investment in health care with these relationships.MethodsCross-sectional information was collected on 287,035 inpatients giving birth in 373 health care institutions in 24 countries in Africa, Asia and Latin America, between 2004-2005 (in Africa and Latin America) and 2007-2008 (in Asia) as part of the WHO Global Survey on Maternal and Perinatal Health. Analyses investigated associations between indicators measured at the individual, institutional and country level and maternal mortality during the intrapartum period: from admission to, until discharge from, the institution where women gave birth. There were 363 maternal deaths.ResultsIn the adjusted models, women with no education had 2.7 times and those with between one and six years of education had twice the risk of maternal mortality of women with more than 12 years of education. Institutional capacity was not associated with maternal mortality in the adjusted model. Those not married or cohabiting had almost twice the risk of death of those who were. There was a significantly higher risk of death among those aged over 35 (compared with those aged between 20 and 25 years), those with higher numbers of previous births and lower levels of state investment in health care. There were also additional effects relating to country of residence which were not explained in the model.ConclusionsLower levels of maternal education were associated with higher maternal mortality even amongst women able to access facilities providing intrapartum care. More attention should be given to the wider social determinants of health when devising strategies to reduce maternal mortality and to achieve the increasingly elusive MDG for maternal mortality.

Model-Based Analysis of Costs and Outcomes of Non-Invasive Prenatal Testing for Down's Syndrome Using Cell Free Fetal DNA in the UK National Health Service

Background Non-invasive prenatal testing (NIPT) for Down’s syndrome (DS) using cell free fetal DNA in maternal blood has the potential to dramatically alter the way prenatal screening and diagnosis is delivered. Before NIPT can be implemented into routine practice, information is required on its costs and benefits. We investigated the costs and outcomes of NIPT for DS as contingent testing and as first-line testing compared with the current DS screening programme in the UK National Health Service. Methods We used a pre-existing model to evaluate the costs and outcomes associated with NIPT compared with the current DS screening programme. The analysis was based on a hypothetical screening population of 10,000 pregnant women. Model inputs were taken from published sources. The main outcome measures were number of DS cases detected, number of procedure-related miscarriages and total cost. Results At a screening risk cut-off of 1∶150 NIPT as contingent testing detects slightly fewer DS cases, has fewer procedure-related miscarriages, and costs the same as current DS screening (around UK£280,000) at a cost of £500 per NIPT. As first-line testing NIPT detects more DS cases, has fewer procedure-related miscarriages, and is more expensive than current screening at a cost of £50 per NIPT. When NIPT uptake increases, NIPT detects more DS cases with a small increase in procedure-related miscarriages and costs. Conclusions NIPT is currently available in the private sector in the UK at a price of £400-£900. If the NHS cost was at the lower end of this range then at a screening risk cut-off of 1∶150 NIPT as contingent testing would be cost neutral or cost saving compared with current DS screening. As first-line testing NIPT is likely to produce more favourable outcomes but at greater cost. Further research is needed to evaluate NIPT under real world conditions.

A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care.

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.

Palliative care needs of hospital inpatients

We read with interest Morize et al.’s description of a survey of the palliative care needs of patients with advanced disease in a French university hospital.1 We have recently undertaken a survey of the palliative care needs on inpatients in a large inner London teaching hospital, and are struck by the similarities in the findings. The King’s College Hospital Palliative Care Team (PCT) undertook a survey of the case-notes of all adult inpatients (excluding labour ward) over 3 days in July 1998. Advanced disease was defined as ‘disease that is no longer amenable to curative treatment, where the aim of any therapeutic intervention is to improve quality of life’. For the purposes of the survey, the study team looked for evidence of any of the following criteria in the case notes to help to identify patients with advanced disease: (i) prognosis estimated to be <3 months; (ii) patients receiving maximal medical therapy; (iii) symptoms from disease severely limiting activity and/or needing help with personal care; (iv) evidence of recent clinical deterioration. Twenty-nine medical and surgical wards were surveyed over 3 days. Notes were located for 91% (553/606) of the inpatients. Fifty-two per cent (286) of the patients were male, 75% (216) were white, 12% (35) of Black Caribbean and 5% (14) of Black African origin. The median age was 66 (range 15–101). Twelve per cent (64/553) of patients were identified as having advanced disease (Table 1). Patients with cancer, chronic obstructive pulmonary disease (COPD) and HIV were most likely to have advanced disease. Pain (39%), weakness (33%), constipation (31%), agitation (23%), anorexia (23%) and breathlessness (22%) were the most frequently recorded symptoms. Patient worries or concerns were noted in 23% (15), and those of carers in 31% (20) of notes. Difficulties in organizing or co-ordinating a discharge were recorded in 27% (17). Only 30% (19) of the patients with advanced disease were known to the hospital palliative care team. There was poor documentation of discharge plans: in particular involvement of a community palliative care team was recorded in only 17% (11) of patient’s notes, and of a district nurse or social worker in only 11% (7). A resuscitation order was documented in 38% (24) of case notes. The lack of documentation of issues raised by patients or carers and of resuscitation orders in two-thirds of notes, in addition to the perceived lack of co-ordination of discharge planning, suggest a lack of forward planning of care and of the complex needs of this patient group. This survey identified 12% of patients in a general hospital as having advanced disease, but has not attempted to identify in detail the needs of these and whether they are being met in the acute hospital environment. These issues, however, are critical for purchasers and providers when planning or developing hospital palliative care services. Up to 60% of terminally ill cancer patients may experience uncontrolled symptoms in hospital.2 Hospital palliative care teams can facilitate improvements in symptom control,3,4 patient and family insight and placement,3 but are under-utilized.5 Studies that assess the unmet needs of patients with advanced disease in hospital are to be encouraged in line with the development of hospital palliative care services.

The benefits and harms of providing parents with weight feedback as part of the national child measurement programme: a prospective cohort study

BackgroundSmall-scale evaluations suggest that the provision of feedback to parents about their child’s weight status may improve recognition of overweight, but the effects on lifestyle behaviour are unclear and there are concerns that informing parents that their child is overweight may have harmful effects. The aims of this study were to describe the benefits and harms of providing weight feedback to parents as part of a national school-based weight-screening programme in England.MethodsWe conducted a pre-post survey of 1,844 parents of children aged 4–5 and 10–11 years who received weight feedback as part of the 2010–2011 National Child Measurement Programme. Questionnaires assessed general knowledge about the health risks associated with child overweight, parental recognition of overweight and the associated health risks in their child, child lifestyle behaviour, child self-esteem and weight-related teasing, parental experience of the feedback, and parental help-seeking behaviour. Differences in the pre-post proportions of parents reporting each outcome were assessed using a McNemar’s test.ResultsGeneral knowledge about child overweight as a health issue was high at baseline and increased further after weight feedback. After feedback, the proportion of parents that correctly recognised their child was overweight increased from 21.9% to 37.7%, and more than a third of parents of overweight children sought further information regarding their child’s weight. However, parent-reported changes in lifestyle behaviours among children were minimal, and limited to increases in physical activity in the obese children only. There was some suggestion that weight feedback had a greater impact upon changing parental recognition of the health risks associated with child overweight in non-white ethnic groups.ConclusionsIn this population-based sample of parents of children participating in the National Child Measurement Programme, provision of weight feedback increased recognition of child overweight and encouraged some parents to seek help, without causing obvious unfavourable effects. The impact of weight feedback on behaviour change was limited; suggesting that further work is needed to identify ways to more effectively communicate health information to parents and to identify what information and support may encourage parents in making and maintaining lifestyle changes for their child.

Influences on forms of national identity and feeling ‘at home’ among Muslim groups in Britain, Germany and Spain:

Muslims in Europe are increasingly constructed as problematic and insular. This article examines whether this construction may be justified and the impact this has had on the attitudes of Muslims living in different countries in Europe. Over 70 percent of Bangladeshi, Turkish and Moroccan Muslims living in Britain, Germany and Spain, respectively, felt ‘at home’ in their country of residence. This sense of being at home, and whether the events of 11 September 2001 or 11 March 2004 affected this was associated with citizenship of or birth in Europe, experiences of victimization and perceived local social support. Citizenship, experiences of discrimination and strength of religious identities were associated with reporting British, German or Spanish identities. Rather than providing evidence of self-segregation, these findings emphasize the impact of the political and social marginalization faced by Muslim groups in Europe, which significantly affects their ability to feel themselves at home there.

Ethnic and religious differences in the attitudes of people towards being 'British'

Negative rhetoric and policy regarding Muslims has been justified according to a perceived lack of integration into British society. However, this lack of integration has not been empirically established and remains poorly described. This paper explores whether there are variations in levels of ‘Britishness’ and perceptions of the compatibility between Britishness and other cultural/religious identities among different minoritized groups in England and Wales. It examines the impact of racialization and other forms of social and economic exclusion on ideas of Britishness, focusing on similarities and differences in a sense of access to forms of Britishness among migrant groups. Descriptive and multivariate analyses of Citizenship Survey data showed that 90 per cent of Muslims, Hindus, Sikhs and Christians felt part of Britain. Muslims were more likely than Caribbean Christians to report a strong British identification and (along with Hindus and Sikhs) to recognize potential compatibility between this and other aspects of national identity. The strength of this feeling was associated with age, gender, generation and, importantly, risk of racist victimization. Greater recognition must be given to the impact of social exclusion on the ability of ethnic and religious minority groups to feel part of British society, and also to the strong claim to Britishness made by Muslim people in England.