challenges of research in palliative care gail wiley clrn palliative care local specialty group
TRANSCRIPT
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Challenges of Research in Palliative Care
Gail Wiley
CLRN Palliative Care Local Specialty Group
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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
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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
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NIHR Survey of UK Research Networks
Audit Group
• Mike Bennett (Chair of Pall Care CSG)
• Helen Radford (CSG Project Officer)
• Jo Gluth (Research Secretary)
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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
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Factors in successful recruitment
• Identifying motivated and experienced clinicians
• Having dedicated research staff coupled with training and education
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What do you think are the barriers to palliative care research with your network? Please list:
STUDIES - 21 STAFF - 36 ENVIRONMENT - 35
Limited portfolio/ lack of available studies
16 No research nurse/ not
enough research nurses
7 Lack of resources 5
Local studies not being adopted 2 Limited staff time 6 Limited Funding 4
Lack of randomised control trials 1
Lack of palliative care experience among staff 4 No culture of research 4
Some trials too complex in design for an
inexperienced network to take on
1 Lack of clinical and/ or academic leadership
4 Palliative Care cross cutting over lots of
topics 2
Ignorance about the portfolio
1 Not enough specialists in the local area
4 Insurance issues for hospices
2
No administrative support
2 None 2
Staff consider trials too burdensome to
patients 2 No engagement in
research context 1
Generating enthusiasm 2
Interface between home, hospice and
hospital 1
Need more research personnel 2
Network focussed on secondary care 1
Lack of training 1 Lack of speciality study group 1
No champion 1 Cultural barriers 1 Palliative care
consultants afraid of research
1 Lack of infrastructure
support for developing grant applications
1
Research is low down on the priority list at
local hospices 1
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(a) what are the factors that have contributed to this achievement
STUDIES - 3 STAFF - 43 ENVIRONMENT - 16
Home-grown study 1 Experienced palliative care nurse 9 Support from the co-
ordinating team 2
Suitability research before start studies 1 Clinician interest 7 Funded support 2
Availability of suitable study 1
Availability of funded research
nurse 6 Cross-network links 1
Good team of staff in place to
undertake the work 6 Willingness of
patients 1
Experienced palliative care
consultant/ specialist
5 Multi-disciplinary team discussion 1
Enthusiasm and drive in the team 4 Prioritising research
in job roles 1
Having a research champion 3
Availability of a speciality group in
palliative care 1
Motivated PI 1 Additional funding 1 Association with ‘big
name’ champion 1 Network is not the right place to ask that 1
Reflects interests of local researchers 1 In an area that needs
research 1
Can’t say/ not sure 1 Based in cancer
centre 1
Have trial strategy meetings 1
Not Sure 1
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Findings
• Perceived barriers featured
• Lack of clinical leadership• Lack of dedicated research staff• Poor infrastructure within hospices• Not enough multicentre studies on the portfolio
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Wot, no clinical research?
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New Local Palliative Care Specialty Group
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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
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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
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• Palliative Care Research Practitioner
• Palliative Care Experience – worked in Hospice and Acute Unit
• Appointed in January 2009
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Challenge of Palliative Care Research on the Ground
Issues :
• social attitudes, which we all share.
• attitudes towards EOL issues amongst professionals
• communication about EOL
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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.
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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.
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Threat to staff and patients!
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Storytime . . . .
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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.
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PiPS Screening
• All in patient admissions screened
• Locally advanced or metastatic cancer – no treatment planned
• Age 18
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PiPS Data collected
Questionnaire - 10 minutes, Day 0 and Day 5-9• AMT• Demographics• Symptoms• Disease related variables• Bloods• Performance status• Global Health Status
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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
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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!
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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.
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The Challenge of Gatekeeping
Both my own and Hospice nurses
Developing trust
Being assertive
Use of positive language
Giving ward staff feedback
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PiPS Recruitment• Screened 180 in-patient admissions
• 21 not eligible
• 88 not approached – various reasons – predominantly my annual leave!
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Recruitment cont’d
28 patients recruited
7 of whom incompetent patients
23 patients recruited in Blackpool
Total of 51 substantial contribution to the study
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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
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SPRAY
Briefly. . .Double Blind RCT with placebo arm.A dose range exploration of Sativex for cancer
painOur first commercial studyNew set of practical and organisational
challenges – especially pharmacy issues
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SPRAY
New – recruiting from out-patient populationEducation session with Macmillan nurses and
other referrersLogistical planning – getting drug from RLI stocks
to the patient in the Hospice –Volunteer driversWork with pharmacy colleagues has been a
great success – Thank you!
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SPRAY
Started screening in late August.Screened 2 patients in early SeptemberRandomised 1 patient on to study drug2nd highest recruiters in the UKSuccessfully tested systems and in readiness for
other pharma trials
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Menu for 2010
• Fan for breathlessness – just started recruiting
• KPS
• Modafinil for fatigue
• TENS for cancer bone pain
• Cannabis spray II