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Palliative Medicine Research The National Agenda and Lancaster Initiatives. Mike Bennett Professor of Palliative Medicine Lancaster University. Outline. A short history lesson Current activity Future directions. Single centre studies Largely observational
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Palliative Medicine ResearchThe National Agenda and Lancaster Initiatives Mike Bennett Professor of Palliative Medicine Lancaster University
Outline • A short history lesson • Current activity • Future directions
Single centre studies Largely observational Charismatic champions of research Cicely Saunders original vision clearly stated research is integral to hospice care Before 1987…
Early examples John Hinton
Robert Twycross The first RCT in palliative care? Br J Pharmacol. 1972 November; 46(3): 554P–555P.
1987 - 2000 • Palliative Care Research Society • Formed as PCRF in 1995 • dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination. • EAPC research forum • First meeting in Berlin 2000 • HQ in Trondheim, Norway (Prof Stein Kaasa)
1987 - 2000 • In 1988 • Zero academic chairs in palliative medicine • In 1998 • 5 substantive academic chairs in palliative medicine (not honorary) • London (2) - Kings, St Thomas’ • Bristol, Cardiff, and Sheffield
Steady output of descriptive research Few RCTs, all around service delivery Palliat Med. 1995 Jan;9(1):27-35. Links Regional Study of Care for the Dying: methods and sample characteristics. Addington-Hall J, McCarthy M. British Journal of Cancer (2002) 87, 733-739.The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care teamG W Hanks et al 1987 - 2000
2001 NCRI formed and established Strategic Planning Group for palliative care research (2002) 2003 Palliative Care clinical studies group formed within NCRN 2000 - 2008Strategic initiatives
2000 - 2008 • 2006 • Additional funding for 2 ‘SuPaC’ research collaboratives (£1.9m each over 5 years)
2000 - 2008 • COMPASS: • COMPlex Interventions: Assessment, TrialS and Implementation of Services • www.compasscollaborative.com • CECo • Cancer Experiences Collaborative • www.ceco.org.uk
2000 - 2008Research priorities • Yorkshire scoping exercise • Symptoms • Service delivery • Poor capacity • but better in hospices • Other surveys • ‘Coal face workers’ • symptom management dominates • ‘Ivory tower academics’ • Methodological issues e.g. outcomes assessment, design
Current activity • In 2008 • 10 academic chairs • New posts • Liverpool (2), Edinburgh (2), Lancaster
Current activity • NCRN Palliative Care group • 4 subgroups • Pain (Prof Fallon) • Prognostication (Dr Stone) • Breathlessness (Dr Booth) • Cachexia (Dr Wilcock)
Future challenges • Intervention studies • testing hypotheses • answering important clinical questions about therapies • Multicentre studies • conducting research effectively • answering questions with greater power • harnessing potential of hospices
Future challenges • Primary palliative care • Service delivery • Including symptom control at home • Integration of ‘community’ services • Primary care • Hospice services • Community specialist nurses
End of life care strategy Prognostication Service delivery for patients at home or ‘in the community’ Future challenges
International Observatory on End of Life Care Lancaster initiatives
Current themes and activities • 1. Cancer pain • 1.1. Older people’s experiences • 1.2. Educational interventions • 1.3. TENS clinical trial • 1.4. QST to determine analgesic therapy • 2. End of Life Care • 2.1. Screening for psychological distress • 2.2. Impact of information on rehydration decisions
The vision • Create network of research active hospices in North Lancashire and Cumbria • Undertake UKCRN portfolio research studies • locally developed • contribute to multicentre recruitment • Building capacity • involving clinical staff in research • integrating research activity and findings into routine palliative care services
Network of research active hospices • Core funding from Cumbria and Lancashire CLRN to support 3 hospices • £55k per year for 3 years • Lancaster, Blackpool, Preston • Consultant sessions • Full time health research practitioner • Will co-ordinate governance and management of studies • Attract additional research support staff
CR-UK TENS Feasibility study nearing completion RCT starting early 2009 Network studies
DVD trial Brief educational intervention for cancer pain Feasibility study underway RCT planned early 2009 Network studies
Network studies • Links with industry • Increased capacity for pharma trials • Nasal fentanyl for breakthrough pain • Methylnaltrexone for opioid induced constipation • Contributing to other multicentre UKCRN trials • Fatigue • Using exercise as an outcome measure • Breathlessness • RCT of fan for breathlessness • Pain • S-ketamine in cancer neuropathic pain
Thank you m.i.bennett@lancaster.ac.uk