Challenges of Research in Palliative Care

Gail Wiley

CLRN Palliative Care Local Specialty Group

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

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

NIHR Survey of UK Research Networks

Audit Group

• Mike Bennett (Chair of Pall Care CSG)

• Helen Radford (CSG Project Officer)

• Jo Gluth (Research Secretary)

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

Factors in successful recruitment

• Identifying motivated and experienced clinicians

• Having dedicated research staff coupled with training and education

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

(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

Findings

• Perceived barriers featured

• Lack of clinical leadership• Lack of dedicated research staff• Poor infrastructure within hospices• Not enough multicentre studies on the portfolio

Wot, no clinical research?

New Local Palliative Care Specialty Group

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

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

• Palliative Care Research Practitioner

• Palliative Care Experience – worked in Hospice and Acute Unit

• Appointed in January 2009

Challenge of Palliative Care Research on the Ground

Issues :

• social attitudes, which we all share.

• attitudes towards EOL issues amongst professionals

• communication about EOL

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.

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.

Threat to staff and patients!

Storytime . . . .

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.

PiPS Screening

• All in patient admissions screened

• Locally advanced or metastatic cancer – no treatment planned

• Age 18

PiPS Data collected

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

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

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!

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.

The Challenge of Gatekeeping

Both my own and Hospice nurses

Developing trust

Being assertive

Use of positive language

Giving ward staff feedback

PiPS Recruitment• Screened 180 in-patient admissions

• 21 not eligible

• 88 not approached – various reasons – predominantly my annual leave!

Recruitment cont’d

28 patients recruited

7 of whom incompetent patients

23 patients recruited in Blackpool

Total of 51 substantial contribution to the study

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

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

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!

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

Menu for 2010

• Fan for breathlessness – just started recruiting

• KPS

• Modafinil for fatigue

• TENS for cancer bone pain

• Cannabis spray II

Any Questions

Thankyou for listening

gail.wiley@northlancs.nhs.uk