Palliative and end-of-life care research in Scotland 2006–2015: a systematic scoping review

Abstract

BackgroundThe Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016–2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006–15).MethodsA systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added.ResultsIn total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%).ConclusionsThere was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990–2005) and a similar review of Irish palliative care research (2002–2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended.Electronic supplementary materialThe online version of this article (10.1186/s12904-017-0266-0) contains supplementary material, which is available to authorized users.

Examining palliative and end of life care research in Ireland within a global context: a systematic mapping review of the evidence

“…The key findings demonstrate not only a continued upward trend in the quantity of palliative care research being undertaken in Ireland, but also developments in research impact as evidenced by the increase in publications in higher impact journals, increased collaborative working both nationally and internationally, some development in methodologies, and consolidation of key research themes such as research focusing on specific groups, services, and settings. Whilst palliative care research is on the increase in terms of quality and quantity, consideration of these findings in parallel with the recent reviews of palliative care in Scotland [ 10 ], South Asia [ 13 ], Sweden [ 11 ], and China [ 12 ] evidences that further progress is required.…”

“…Overall, 151 papers were identified in this 5-year period compared to 151 in the previous 10-year period, demonstrating an increase of 100%, and bringing research capacity in line with that of Scotland, which published 308 papers in a ten year period (2006–2015) [ 10 ]. In addition, whilst the majority of studies remained largely descriptive and needs based, there was an increase in review studies from 3% noted in previous review to 17%.…”

“…These include areas such as the provision of out of hours’ services, ongoing support for carers, and advance care planning. Palliative care services and settings have been identified as a common research topic internationally [ 9 , 10 , 12 , 13 ]. Whilst the inclusion of a mixture of settings within many studies reflects the reality of the patient experience, the focus on community settings is in line with international and national policy [ 7 , 21 ].…”

“…This lack of global information around palliative care research capacity has led to individual countries seeking to assess the research they are undertaking. Recent reviews have sought to examine the state of palliative care research within specific regions, for example, Ireland [ 9 ], Scotland [ 10 ] Sweden [ 11 ], China [ 12 ], and South Asia [ 13 ], indicating an increased momentum for countries to take cognisance of the state of palliative care research in order to inform policy and practice, and also to inform the wider debate within an international context. The reviews to date indicated that while the quantity of palliative care research is increasing, it is often based on small, needs-based studies (Table 1 ).…”

Optimised clinical study recruitment in palliative care: success strategies and lessons learned

“…Adequately powered palliative care clinical studies conducted solely in hospices are relatively few, with a recent review showing that only 10% of palliative and end-of-life studies conducted in Scotland (2006–2015) were undertaken in a hospice 6. Yet, larger-scale recruitment is possible 7.…”