Challenges of Research in Palliative Care

1. Challenges of Research in Palliative Care Gail Wiley CLRN Palliative Care Local Specialty Group

2. Aims • To give you a brief history of the Specialty Group • To give you a ‘flavour’ of my job • To put a piece of evidence into the context of real life

3. Challenges of Palliative Care Research • Brief history • Reflect on challenges and successes of screening and recruitment using PiPS and SPRAY as an example • Future studies

4. NIHR Survey of UK Research Networks Audit Group • Mike Bennett (Chair of Pall Care CSG) • Helen Radford (CSG Project Officer) • Jo Gluth (Research Secretary)

5. UK Research Network survey • Telephone Survey • 43 of 65 UK Research Networks took part. • Networks keen to support palliative care research with plans to increase staff support

6. Factors in successful recruitment • Identifying motivated and experienced clinicians • Having dedicated research staff coupled with training and education

9. Findings • Perceived barriers featured • Lack of clinical leadership • Lack of dedicated research staff • Poor infrastructure within hospices • Not enough multicentre studies on the portfolio

10. Wot, no clinical research?

11. New Local Palliative Care Specialty Group

12. The vision • Create network of research active hospices in North Lancashire and Cumbria • Undertake NIHR 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

13. Network of research active hospices • Core funding from Cumbria and Lancashire CLRN to support 3 hospices • £60k per year for 2 years • Lancaster, Blackpool, Preston • Consultant sessions • Health research practitioner (0.6 WTE) in each unit • Clinical trials co-ordinator

14. Palliative Care Research Practitioner • Palliative Care Experience – worked in Hospice and Acute Unit • Appointed in January 2009

15. Challenge of Palliative Care Research on the Ground Issues : • social attitudes, which we all share. • attitudes towards EOL issues amongst professionals • communication about EOL

16. Research in a Hospice • New to Hospice environment – practical challenges, finding a desk, lap top. • New to Hospice staff, and new to me – fostering positive relationships – trust. • Patients often too tired and frail, possibly with a short life expectancy • Working with newly appointed Research Nurses in Blackpool and Preston.

17. Continued … • Research could be seen to be too burdensome on patients’ already precious time and energy. • Because of deterioration and life expectancy of some hospice patients, lengthy studies might have low recruitment.

18. Threat to staff and patients!

19. Storytime . . . .

20. PiPS • Prognosis in Palliative Care Study • A multi-centre study to develop a prognostic indicator for use in patients with advanced cancer. • CI is Dr Paddy Stone, St George’s • A prospective observational study of consecutive eligible referrals to palliative care units.

21. PiPS Screening • All in patient admissions screened • Locally advanced or metastatic cancer – no treatment planned • Age 18

22. PiPS Data collected Questionnaire - 10 minutes, Day 0 and Day 5-9 • AMT • Demographics • Symptoms • Disease related variables • Bloods • Performance status • Global Health Status

23. Data continued . . . • Observer rated symptom checklist and asked 2 clinicians to estimate survival of patient • Clinician descriptors – age, sex, grade, years qualified, years worked in Palliative Care

24. PiPS Sensitive issues . . . • Patients’ attitudes around prognosis • Self prognosis • Staff estimates of survival Study concerned with sensitive issues – challenge of gatekeeping – ward staff and my own! Communication!

25. New Ground • Particular challenge was the eligibility of incompetent patients, where relatives/friends were asked to consent on the patient’s behalf. • Important to include this group as cognitive impairment is one of the variables strongly associated with decreased survival.

26. The Challenge of Gatekeeping Both my own and Hospice nurses Developing trust Being assertive Use of positive language Giving ward staff feedback

27. PiPS Recruitment • Screened 180 in-patient admissions • 21 not eligible • 88 not approached – various reasons – predominantly my annual leave!

28. Recruitment cont’d 28 patients recruited 7 of whom incompetent patients 23 patients recruited in Blackpool Total of 51 substantial contribution to the study

29. Reflections on PiPS Success! • All encompassing – because all patients were screened • Constant presence on ward raised profile of research in Hospice • Proof that we can involve incompetent patients in research • Staff questionnaires – involved the clinical staff in the research process

30. SPRAY Briefly. . . Double Blind RCT with placebo arm. A dose range exploration of Sativex for cancer pain Our first commercial study New set of practical and organisational challenges – especially pharmacy issues

31. SPRAY New – recruiting from out-patient population Education session with Macmillan nurses and other referrers Logistical planning – getting drug from RLI stocks to the patient in the Hospice – Volunteer drivers Work with pharmacy colleagues has been a great success – Thank you!

32. SPRAY Started screening in late August. Screened 2 patients in early September Randomised 1 patient on to study drug 2nd highest recruiters in the UK Successfully tested systems and in readiness for other pharma trials

33. Menu for 2010 • Fan for breathlessness – just started recruiting • KPS • Modafinil for fatigue • TENS for cancer bone pain • Cannabis spray II

34. Any Questions Thankyou for listening gail.wiley@northlancs.nhs.uk