Palliative care provision varies widely, and the effectiveness of palliative and hospice care teams (PCHCT) is unproven. To determine the effect of PCHCT, 10 electronic databases (to 2000), 4 relevant journals, associated reference lists, and the grey literature were searched. All PCHCT evaluations were included. Anecdotal and case reports were excluded. Forty-four studies evaluated PCHCT provision. Teams were home care (22), hospital-based (9), combined home/hospital care (4), inpatient units (3), and integrated teams (6). Studies were mostly Grade II or III quality. Funnel plots indicated slight publication bias. Meta-regression (26 studies) found slight positive effect, of approximately 0.1, of PCHCTs on patient outcomes, independent of team make-up, patient diagnosis, country, or study design. Meta-analysis (19 studies) demonstrated small benefit on patients' pain (odds ratio [OR]: 0.38, 95% confidence interval [CI]: 0.23-0.64), other symptoms (OR: 0.51, CI: 0.30-0.88), and a non-significant trend towards benefits for satisfaction, and therapeutic interventions. Data regarding home deaths were equivocal. Meta-synthesis (all studies) found wide variations in the type of service delivered by each team; there was no discernible difference in outcomes between city, urban, and rural areas. Evidence of benefit was strongest for home care. Only one study provided full economic cost-benefit evaluation. This is the first study to quantitatively demonstrate benefit from PCHCTs. Such comparisons were limited by the quality of the research.
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the sample's standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice.
To evaluate the effectiveness of palliative day care in improving pain, symptom control, and quality of life (QOL), 120 consecutive new referrals to five specialist palliative day care centers were recruited into a prospective comparative study. Fifty-three comparison patients were identified as those patients receiving usual palliative care services (home care, inpatient care), but did not attend day care. Patients were assessed at 3 interviews (baseline, 6-8 weeks, and 12-15 weeks) using measures of health-related quality of life: McGill Quality of Life Questionnaire (MQOL) and Palliative Care Outcome Scale (POS). There were two main analyses: 1) patient demographic data were analyzed using chi-square (chi(2)), and 2) QOL data were compared, based on distribution of scores, using the Mann-Whitney test (MQOL and POS), and Wilcoxon Signed Rank for within group differences (POS data only); P < 0.05 was taken as significant. The patients were representative of those attending palliative day care in the UK. At baseline, the day care group were (non-significantly) worse than the comparison group in the MQOL support domain (P = 0.065). The comparison group had marginally more severe pain at baseline (P = 0.053) and more severe symptoms at second assessment (P = 0.025). Both patient groups maintained overall health-related quality of life during the three months of the study. Palliative day care was not found to improve overall health-related quality of life. The limitations of the QOL measures in identifying the effects (patient outcomes) of palliative day care and the differences between the two patient groups (age, employment, unequal sample sizes) were limitations of the study and indicate the need for further research in this area.
Palliative day care (PDC) provides individualized care to meet patients' needs and preferences and has posed problems for economic evaluation. Current methods are limited in their ability to capture relevant outcomes. The choice experiment elicits preferences for multiple aspects of care rather than a single outcome. A choice experiment was undertaken at four centers in England. A random effects probit model was used. Interaction terms relating to patient and service characteristics were explored. Seventy-nine patients participated. All characteristics of PDC except bathing and hairdressing were significant (P < 0.001). Access to specialist therapies was three times as important as medical support and twice as important as staying all day. Interaction terms were not significant, except for age and preference for specialist therapies, although the sample may not have been adequate to detect differences. Choice experiments provided useful insights by quantifying preferences for services, providing an alternative to cost-effectiveness analysis.
A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.
The remit and boundaries of the Macmillan Nursing role in the UK have been called into question recently by a number of policy-driven changes. The rapid appointment of tumour site-specific nurses and the development of posts for palliative medicine, stemming originally from the Calman-Hine recommendations for reorganizing cancer services, have created unparalleled challenges of adaptation to new working practices and procedures. The extent to which Macmillan Nurses are adapting to these new demands was addressed as part of a major evaluation study of UK Macmillan Nursing in 12 sites commissioned by the UK charity Macmillan Cancer Relief. This paper draws upon semi-structured interviews with Macmillan Nurses (n = 44) and their key colleagues (n = 47). We found that differences of expectation between Macmillan Nurses and their managers about the appropriate focus of their work lead to problems of role ambiguity and role conflict; that Macmillan Nurses lack resources with which to develop an educative and consultative role and yet substitute for inadequacies in skills and knowledge of other health care staff; and that problems are associated in co-working with newly appointed cancer site-specific nurses and palliative medicine colleagues. Macmillan Nursing has a crucial role to play in meeting the objectives in the NHS Cancer Plan. However, in order to ensure that their expertise is used efficiently and effectively, there is an urgent need to clarify the nature and scope of the Macmillan Nurse role, to attend to issues of team working and to improve the skills of nonspecialist staff in palliative care.
Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was undertaken at the start of a major multicentre trial of palliative day care to meet two clear aims: to understand more about the structure and processes of palliative day care, and to identify ways in which service outcomes could be evaluated and measured. In-depth observations at five palliative day care centres were undertaken across one health region. This provided a better understanding of the models, outcomes and processes of palliative day care in five different environments. Centres represented the spectrum of medical and social care models and findings were analysed using an organisational systems approach. The findings showed that, despite the lack of a national strategic approach to developing the service, the centres all provided a core set of services which were broadly similar. However, differences in philosophy, ownership, and organisation affected how the services were provided and may have an impact on the costs of the service. The study has provided a more in-depth understanding of palliative day care services in order to design an effective research strategy for evaluating a service which crosses the boundaries of health and social care.
This review aimed to identify and appraise all systematic reviews of palliative care services, to examine their findings in relation to methods used, and to explore whether further methods such as meta-analysis and meta-regression may be worthwhile. Ten databases were searched and augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Five systematic reviews met the inclusion criteria, and the update electronic search identified a further systematic review which found similar studies. A total of 39 studies were identified by the five systematic reviews. Of the 39 studies, 15 were RCTS, and 12 of those were North American. In comparison, the majority of U.K. studies were retrospective. Each review concluded similarly that there was a lack of good quality evidence on which to base conclusions. The more recent reviews were more rigorous, but none used a quantitative analysis. Despite the difficulties in combining heterogeneous interventions and outcomes in meta-analysis or meta-regression, such techniques may be valuable. More high quality evidence is needed to compare the relative merits of the differences in models of palliative care services, so that countries can learn from other appropriate systems of care at end of life.
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