The online version of this article (https://doi.org/10.1186/s12904-017-0266-0) contains supplementary material, which is available to authorized users.
The 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).
A 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.
In 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%).
There 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.
Scottish Government: Strategic Framework for Action on Palliative and End of Life care: 2016–2021. http://www.gov.scot/Publications/2015/12/4053/downloads. In .; 2015.
Health and Sport Committee: A report for the Scottish Parliment by Professor David Clark: International comparisons in palliative care provision: what can the indicatoras tell us? http://www.parliament.scot/parliamentarybusiness/CurrentCommittees/92168.aspx. In .; 2015.
Scottish Government: Strategic Framework for Action on Palliative and End of Life Care - Supporting Evidence Summary. http://www.gov.scot/Resource/0049/00491390.pdf. In .; 2015.
Johnston B, Nimmo S, Baughan P, Kearney N: A scoping review of palliative care in Scotland. Final report. Cancer care research Centre . Available at: https://www.palliativecarescotland.org.uk/content/publications/1347299403_A-Scoping-Review-of-Palliative-Care.pdf. In .; 2006.
Peters MDJ, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Intl J Evidence-Based Healthcare. 2015;13(3):141–6. CrossRef
WHO Definition of Palliative Care [ http://www.who.int/cancer/palliative/definition/en/].
Denvir MA, Highet G, Robertson S, Cudmore S, Reid J, Ness A, Hogg K, Weir C, Murray S, Boyd K. Future care planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial. BMJ Open. 2014;4(7):e005021. CrossRefPubMedPubMedCentral
Johnston B, Pringle J, Gaffney M, Narayanasamy M, McGuire M, Buchanan D. The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting. BMC Palliative Care. 2015;14:9. CrossRefPubMedPubMedCentral
Levack P, Buchanan D, Dryden H, Baker L. Specialist palliative care provision in a major teaching hospital and cancer centre - an eight-year experience. J R Coll Physicians Edinb. 2008;38(2):112–9.
Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M, MacNee W, Sheikh A. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ. 2011;342(7791):268.
Kristiansen M, Irshad T, Worth A, Bhopal R, Lawton J, Sheikh A. The practice of hope: a longitudinal, multi-perspective qualitative study among south Asian Sikhs and Muslims with life-limiting illness in Scotland. Ethnicity & Health. 2014;19(1):1–19. CrossRef
Johnson JR, Lossignol D, Burnell-Nugent M, Fallon MT. An open-label extension study to investigate the long-term safety and tolerability of THC/CBD oromucosal spray and oromucosal THC spray in patients with terminal cancer-related pain refractory to strong opioid analgesics. J Pain Symptom Manag. 2013;46(2):207–18. CrossRef
Laird BJ, Scott AC, Colvin LA, McKeon A-L, Murray GD, Fearon KC, Fallon MT. Pain, depression, and fatigue as a symptom cluster in advanced cancer. J Pain Symptom Manag. 2011;42(1):1–11. CrossRef
Stewart RW, Johns N, Fearon KC. Prevention of cachexia in cancer. European Oncology and Haematology. 2012;9(1):46–50. CrossRef
Fearon K, Arends J, Baracos V. Understanding the mechanisms and treatment options in cancer cachexia. Nature Review s Clin Oncol. 2013;10(2):90–9.
Oberholzer R, Hopkinson JB, Baumann K, Omlin A, Kaasa S, Fearon KC, Strasser F. Psychosocial effects of cancer cachexia: a systematic literature search and qualitative analysis. J Pain Symptom Manag. 2013;46(1):77–95. CrossRef
Aapro M, Arends J, Bozzetti F, Fearon K, Grunberg SM, Herrstedt J, Hopkinson J, Jacquelin-Ravel N, Jatoi A, Kaasa S, et al. Early recognition of malnutrition and cachexia in the cancer patient: a position paper of a European School of Oncology task force. Ann Oncol. 2014;25(8):1492–9. CrossRefPubMed
Blum D, Stene GB, Solheim TS, Fayers P, Hjermstad MJ, Baracos VE, Fearon K, Strasser F, Kaasa S, Euro I. Validation of the consensus-definition for cancer cachexia and evaluation of a classification model--a study based on data from an international multicentre project (EPCRC-CSA). Ann Oncol. 2014;25(8):1635–42. CrossRefPubMed
Johns N, Hatakeyama S, Stephens NA, Degen M, Degen S, Frieauff W, Lambert C, Ross JA, Roubenoff R, Glass DJ, et al. Clinical classification of cancer cachexia: phenotypic correlates in human skeletal muscle. PLoS ONE [Electronic Resource]. 2014;9(1):e83618. CrossRef
O'Sullivan R, Meagher D, Leonard M, Watne LO, Hall RJ, Maclullich AM, Trzepacz P, Adamis D. A comparison of the revised delirium rating scale (DRS-R98) and the memorial delirium assessment scale (MDAS) in a palliative care cohort with DSM-IV delirium. Palliat Support Care. 2015;13(4):937–44. CrossRefPubMed
EAPC Definition of Palliative Care [ http://www.eapcnet.eu/Themes/AbouttheEAPC/DefinitionandAims.aspx, Accessed on 29/8/17.]
Fraser LK, Jarvis SW, Moran NE, Aldridge J, Parslow RC, Beresford BA: Children in Scotland requiring palliative care : identifying numbers and needs (the ChiSP study): University of York; 2015.
Tapsfield J, Hall C, Lunan C, McCutcheon H, McLoughlin P, Rhee J, Leiva A, Spiller J, Finucane A, Murray SA. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners. BMJ Support Palliat Care. 2016;
Leblanc TW, Lodato JE, Currow DC, Abernethy AP. Overcoming recruitment challenges in palliative care clinical trials. J Oncology Practice. 2013;9(6):277. CrossRef
Hussainy SY, Marriott JL. Recruitment strategies for palliative cancer care patients and carers. Int J Pharm Pract. 2009;17(6):369–71. CrossRef
Denvir MA, Cudmore S, Highet G, Robertson S, Donald L, Stephen J, Haga K, Hogg K, Weir C, J, Murray S, A, et al. Phase 2 randomised controlled trial and feasibility study of future care planning in patients with advanced heart disease. Sci Rep. 2016;6(1)
Buckingham S, Kendall M, Ferguson S, MacNee W, Sheikh A, White P, Worth A, Boyd K, Murray SA, Pinnock H. HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): mixed-method feasibility pilot randomised controlled trial of a novel intervention. NPJ Primary Care Respiratory Medicine. 2015;25:15020. CrossRefPubMedPubMedCentral
Mason B, Epiphaniou E, Nanton V, Donaldson A, Shipman C, Daveson BA, Harding R, Higginson I, Munday D, Barclay S, et al. Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study. Br J Gen Pract. 2013;63(613):e580–8. CrossRefPubMedPubMedCentral
Mason B, Nanton V, Epiphaniou E, Murray SA, Donaldson A, Shipman C, Daveson BA, Harding R, Higginson IJ, Munday D, et al. My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ Supportive and Palliative Care. 2016;6(1):60–5. CrossRefPubMed
Browne S, Macdonald S, May CR, Macleod U, Mair FS. Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure. PLoS ONE [Electronic Resource]. 2014;9(3):e93288. CrossRef
SPICT - Supportive and Palliative Care Indicators Tool, www.spict.org.uk
Scottish Government: Living and dying well: a national action plan for pallaitive and end of life care in Scotland . In . Edinburgh; 2008.
Zheng L, Finucane A, Oxenham D, McLoughlin P, McCutheon H, Murray S. How good is primary care at identifying patients who need palliative care?: a mixed methods study. Eur J Palliat Care. 2013;20(5):216–22.
Kendall M, Carduff E, Lloyd A, Kimbell B, Cavers D, Buckingham S, Boyd K, Grant L, Worth A, Pinnock H, et al. Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manage. 2015;50(2):216–24. CrossRefPubMed
Carrasco JM, Lynch TJ, Garralda E, Woitha K, Elsner F, Filbet M, Ellershaw JE, Clark D, Centeno C. Palliative Care Medical Education in European Universities: A Descriptive Study and Numerical Scoring System Proposal for Assessing Educational Development. J Pain Symptom Manage. 2015;50(4):516–23. e512 CrossRefPubMed
Centeno C, Lynch T, Garralda E, Carrasco JM, Guillen-Grima F, Clark D. Coverage and development of specialist palliative care services across the World Health Organization European region (2005-2012): results from a European Association for Palliative Care Task Force survey of 53 countries. Palliat Med. 2016;30(4):351–62. CrossRefPubMed
Clark D, Graham F. Evolution and change in palliative care around the world. Medicine. 2011;39(11):636–8. CrossRef
Clark D, Graham F, Centeno C. Changes in the world of palliative care. Medicine. 2015;43(12):696–8. CrossRef
Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;45(6):1094–106. CrossRef
Murray SA, Firth A, Schneider N, Van den Eynden B, Gomez-Batiste X, Brogaard T, Villanueva T, Abela J, Eychmuller S, Mitchell G, et al. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29(2):101–11. CrossRefPubMed
World Health Organisation: Strengthening of palliative care as a component of integrated treatment within the continuum of care. Available at: http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_R7-en.pdf. In .; 2014.
Garber J, Leadbeater C: Dying for change: DEMOS. Available from: https://www.demos.co.uk/project/dying-for-change/. In .; 2010.
Grant E, Leng M, Namukwaya E, Onapito IO, Kimani K, Downing J. Faith and palliative care: a partnership of care in low- and middle-income countries. Dev Pract. 2017;27(5):610–21. CrossRef
Kimani KN, Namukwaya E, Grant L, Murray SA. Cancer and palliative care in Africa. Eur J Cancer Care. 2017;26(1) n/a-n/a
Hockley J, Harrison JK, Watson J, Randall M, Murray S. Fixing the broken image of care homes, could a ‘care home innovation centre’ be the answer? Age Ageing. 2017;46(2):175–8. PubMed
Monroe B, Oliviere D. Resilience in palliative care: achievement in adversity. Oxford: Oxford University Press; 2007. CrossRef
Haraldsdottir E, Clark P, Murray S. Health-promoting palliative care arrives in Scotland. Eur J Palliat Care. 2010;17(3):130–2.
Payne S, Preston N, Turner M, Rolls L: Research in palliative care: can hospices afford not to be involved? : A report for the commision into the future of hospice care . Available from: http://www.professionalpalliativehub.com/sites/default/files/research-in-palliative-care---can-hospices-afford-to-not-be-involved_0.pdf. In .; 2013.
Campbell CL, Bailey C, Armour K, Perry R, Orlando R, Kinghorn P, Jones L, Coast J. A team approach to recruitment in hospice research: engaging patients, close people and health professionals. Int J Palliat Nurs. 2016;22(7):324–32. CrossRef
Curie M: Marie Curie's contribution to palliative and end of life care research funding in the UK, 2002-13. https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/ncri-analysis-report.pdf accessed on 11th September 2017. In .
PeolcPSP: Palliative and end of life care Priority Setting Partnership (PeolcPSP). Available from: https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf. In .; 2015.
Kidd L, Forbat L, Kochen M, Kearney N. The supportive care needs of carers of people affected by cancer stationed in British forces Germany. Eur J Cancer Care. 2011;20(2):212–9. CrossRef
Fordham FT, McMillan S, Best S, Candy B, Thakrar S, Noble B. How current UK research addresses out of hours palliative care. BMJ Support Palliat Care. 2016;6(3):384.382–4. CrossRef
- Palliative and end-of-life care research in Scotland 2006–2015: a systematic scoping review
Anne M. Finucane
Juliet A. Spiller
Scott A. Murray
- BioMed Central
Neu im Fachgebiet AINS
Meistgelesene Bücher aus dem Fachgebiet AINS
e.Med Kampagnen-Visual, Mail Icon II