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

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 November; 46(3): 554P–555P.

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)

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 Jan;9(1): Links Regional Study of Care for the Dying: methods and sample characteristics. Addington-Hall JAddington-Hall J, McCarthy M.McCarthy M British Journal of Cancer (2002) 87, The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team G W Hanks et al

Strategic initiatives 2001 – NCRI formed and established Strategic Planning Group for palliative care research (2002) 2003 – Palliative Care clinical studies group formed within NCRN

– Additional funding for 2 ‘SuPaC’ research collaboratives (£1.9m each over 5 years)

COMPASS: – COMPlex Interventions: Assessment, TrialS and Implementation of Services CECo – Cancer Experiences Collaborative

Research 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