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The workgroup condensed the main research issues into three broad questions, with an emphasis on obtaining timely results and identifying matters that might lend themselves to joint exploration in the USA and the UK.
Place of death has been studied in both countries. Teno, in the USA, examined all deaths by zip code [www.chcr.brown.edu/web-pubs.htm]. Higginson and co-workers, in the UK, analysed all cancer deaths by region and by diagnosis1 and conducted a literature review of place of care in advanced cancer2. Higginson et al. have also done a systematic review of the clinical and cost effectiveness of palliative care teams (now accepted as a Cochrane Review)3. The results indicate some small benefit in patient and carer outcomes. This is across a range of services, although more data exist for home-care services. There appears to be some substitution of home care costs for hospital costs, mainly by reducing the number of inpatient days. An ongoing project at King's College, London, is PROMOTE, which aims to develop methods of regular monitoring of the quality of care for terminally ill patients. The methods include focus groups and interviews conducted in various healthcare settings, and one purpose is to find out how to measure in a culturally sensitive way [www.kcl.ac.uk/kis/schools/kcsmd/palliative/top.htm]. At Brown University in the USA, a ‘mortality fall-back survey’ will include qualitative analyses [www.chcr.brown.edu/web-pubs.htm]. The Health Resources and Services Administration has mounted palliative care demonstration projects addressing the homeless and under-served populations in rural, urban, and correctional health settings [http://hab.hrsa.gov/evaluation.html]. The challenge is to evaluate findings from projects such as these that may have use in both countries.
Systematic reviews are needed to identify qualitative and quantitative measurement issues that require development.
The limited number of successful randomized controlled trials may reflect the particular methodological difficulties palliative care poses for trial design. Problems of recruitment, attrition and the vulnerability of patient groups make randomized controlled trials difficult. Retrospective studies have a place, but there is a need for more prospective studies with comparison groups. Alternative methods such as economic modelling should be considered.
As regards measurement there is a strong case for evaluation of existing indices rather than development of tools specific for palliative care and HIV/AIDS. The best method may be to use core items of a tool with add-on questions depending on the setting or target audience. But caution is needed because inclusion of ‘closure issues’ (sensitive questions) within cognitive questionnaires can be upsetting. Another consideration is whose view one takes when assessing outcomes—the patient, the carer or the healthcare professional?
The group stressed the integration of research findings with clinical care for under-served and socially excluded populations. Scientific findings should improve access to palliative care, the clinical quality of such care, and its integration with curative care and community support services.
We then identified joint US/UK projects for the short term (1 year) and the longer term (5 years). For the next twelve months the following were proposed:
In the next 5 years: