An Evaluation of the Current State of Cancer-Related Palliative and Supportive Care Research in the UK

Abstract

The aim of this study was to establish the current state of the research environment in the UK in relation to cancer supportive and palliative care. Three approaches were used to evaluate the current research environment in supportive and palliative care. A) A bibliometric analysis was conducted on published research output between 2005 and 2010. B) An analysis of the UKCRN portfolio of trials was undertaken to establish the current research environment. C) A questionnaire survey was distributed to research groups in the field with the purpose of mapping the workforce, exploring funding/funding sources and gauging opinions about challenges in supportive and palliative care research. 586 papers met inclusion criteria for the bibliometric analysis, 76 studies were included in the UKCRN portfolio analysis and 36 questionnaires (overall response rate 74.5%) were received from UK research groups. An expansion in research activity is reflected by an increased trend in research output (57% over 5 years) and an increased proportion of studies registered with the NCRN portfolio of trials. Study designs were dominated by observational methods, however, a trend towards increased interventional methods was identified. In the workforce, an aging researcher population was identified and an increased tendency to work in few but large research groups was evident. Group opinions included increased collaboration in the field over the past 5 years, however, the withdrawal of a major funding partner from the field is currently a major challenge for the majority.

Palliative Care Research – A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012

“…Both definitions emphasise the relief of suffering and an active total care based on alleviation of symptoms and problems of various types. The main research topics are broadly similar to the ones found in the Irish , British and Belgium reviews. One exception is that spirituality was explicitly found as a research topic in Ireland, while the Swedish research either conceptualised research topics into existential issues or integrated ethical, existential and spiritual dimensions as part of a holistic approach, for example, in the research topics of illness, symptoms, caring and communication in which the quality‐of‐life dimensions were also found to be integrated.…”

“…The very limited number of intervention studies is particularly dissatisfying, as we now know the potential for the cautious use of nonblinded randomised controlled trials (RCT) design to present significant effects of palliative care – consequently calling for complex, well‐designed intervention studies. Nevertheless, the large proportion of qualitative studies (three of five) in this review, which are notably different from the studies in national reviews from the UK , Belgium and Ireland , could be considered a means to develop evidence for complex clinical interventions . Further, qualitative research approaches resonate with early steps in the development of complex clinical interventions, as well as with the inquiry into experiential and existential outcomes of the identified PC study topics in this study, such as symptoms, illness, grief, relationships and caring (cf.…”

“…By excluding doctoral theses, we might have excluded research in social sciences and humanities which could have given us other results, especially of research designs and foci. Nevertheless, it is evident that Swedish PC research is dominated by a disciplinary background of nursing, with sparse contributions from truly multidisciplinary research, the social sciences and the humanities – results that are similar to that of the UK .…”

“…The claimed need for diversity in research designs and methods may be considered to have been both fulfilled and unfulfilled by the present review. The very low number of clinical intervention studies is to be regarded as a significant inadequacy for the development of practice informed by research evidence, which nonetheless appears to be similar in other reviews . The very limited number of intervention studies is particularly dissatisfying, as we now know the potential for the cautious use of nonblinded randomised controlled trials (RCT) design to present significant effects of palliative care – consequently calling for complex, well‐designed intervention studies.…”

“…Thus, to further develop PC research, critical analysis in terms of characteristics of national PC research is desirable. A limited number of national evaluations of research conducted in the field have been reported, and these show the field to be dominated by observational study designs and by a lack of measurement of outcomes, sampling limitations and strong emphasis on need‐based investigations . Further, in cases where national reviews of research have been reported, these are considered a baseline for future analysis of trends.…”