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Palliative Medicine ResearchThe National Agenda and Lancaster Initiatives

Mike BennettProfessor of Palliative Medicine

Lancaster University

Outline

• A short history lesson

• Current activity

• Future directions

Before 1987…

• Single centre studies

• Largely observational

• Charismatic champions of research

• Cicely Saunders original vision– clearly stated research is

integral to hospice care

• 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

1987 - 2000• Steady output of

descriptive research

• Few RCTs, all around service delivery

Palliat Med. 1995 Jan;9(1):27-35. LinksRegional 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 team

G W Hanks et al

2000 - 2008Strategic initiatives

• 2001– NCRI formed and

established Strategic Planning Group for palliative care research (2002)

• 2003– Palliative Care clinical

studies group formed within NCRN

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

Future challenges

• End of life care strategy – Prognostication

– Service delivery for patients at home• or ‘in the community’

Lancaster initiatives

• 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

Lancaster initiatives

Network studies• 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

• 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

Network studies

Thank you

[email protected]