Implementation of Quality Indicators in
Palliative Care Study (IMPACT)
Nathan Davies, Laura Maio, Dr Krishna Vedavanam,
Professor Steve Iliffe, UCL
Professor Jill Manthorpe, Social Care Workforce Research Unit,
Kings College London
Professor Sam Ahmedzai, Department of Oncology,
Sheffield University
PCPH 18th February 2013
Overview
• Background – palliative care for dementia and
cancer
• What is IMPACT?
• Overview of Methodology
• European commonalities
Cancer
• 12.7 million new cases of cancer diagnosed
worldwide in 2008 (Cancer Research UK, 2008)
• Overall death rate 7.6million worldwide in 2008
(Cancer Research UK, 2008)
• Increases in incidence, mortality and morbidity are
predicted (WHO, 2006)
Dementia
• Ageing population
• 2 billion worldwide by 2050 (UNFPA, 2012)
• 7.7 million people have dementia in Europe and
this will double by 2050 (Alzheimer’s Europe,
2009)
• Median survival after diagnosis 6.7 years (60-69)
and 1.9 years (90+) (Rait et al., 2010)
Dementia symptoms at the end of life
– Severe communication
impairment
– Aspiration
– Dyspnea
– Incontinence
– Infections (immune system
failure)
– Risk of falls/immobility
– Difficulties in swallowing
Prognostication
Death trajectory typical in cancer
Prognostication
Death trajectory typical in chronic conditions (including
dementia)
What is IMPACT?
• IMplementation of quality indicators in PAlliative Care
sTudy – 2011 - 2015
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•
•
•
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Nijmegen, The Netherlands (WP1, WP3)
Bonn, Germany (WP4)
Trondheim, Norway (WP5)
Bologna, Italy (WP6)
London, England (WP2)
Aims
• Develop a model of palliative care taking national
variations into account
• Develop a toolkit of Quality Indicators which can
be implemented to improve palliative care across
Europe and across dementia and cancer
• Develop a toolkit of optimal strategies to improve
organisation of palliative care across Europe and
across dementia and cancer
Quality Indicators
• Quality indicators are explicitly defined and
measurable items referring to outcomes, process,
or structure of care, which allow measurement of
the standard of care
• Developed from existing literature
– 700 + down to 36
• Delphi procedure
RAND modified Delphi Procedure
• Consensus method to determine the extent of
agreement on an issue
• Accepted method for developing indicators where
research evidence is lacking
• 2 rounds:
– Round 1 – online survey – rate quality and usefulness
– Round 2 - consensus meeting – discussion
Example Quality Indicators
• An (electronic) file of a person in need of palliative
care is accessible to professionals in charge of the
person 24/7.
• Do you have a procedure in place to ensure that
relatives of persons who received palliative care
provided by your service are offered bereavement
support, if they need or wish to have support?
• Are opioids available 24/7 for patients in need of
palliative care in your service?
Where?
• 8 sites
– Primary Care
– Hospitals
– Care homes
– Hospices
At least 2 sites in
each setting
What do we need?
• We are interested in talking with GP’s about:
– Quality indicators
– Piloting a set of quality indicators and strategies to
improve organisation of palliative care for dementia and
cancer
Pre-Test
• Quality Indicators implemented
• Profile of site
• Organisational Consultant
discuss the results
Implementation Phase
• What do they want to improve?
• Select from 40 Improvement Strategies from
Toolkit
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–
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Large scale educational method
Small scale educational method
Mentoring
One on one education
• Time frame - 6 Months
post Test
• Repeat Quality Indicators
• How did they improve?
• Evaluation of the improvement strategies and
quality indicators using in depth interviews
What are the common barriers to good
quality palliative care for both cancer
and dementia across five European
countries?
Method
• 67 semi-structured interviews and one focus group
– 16 Interviews + 1 focus group (England)
– 10 Interviews (Germany)
– 16 Interviews (Italy)
– 11 Interviews (The Netherlands)
– 14 Interviews (Norway)
• Analysed using thematic analysis methods
Sampling Frame
Results
• 5 Main obstacles:
– Poor communication between professionals and
patients and their families
– Limited structural/functional integration of services
– Complex funding for palliative care
– Variability in processes of care, including boundaries,
definitions, knowledge, skills and inclusiveness
– Time constraints
Communication between services and
professionals
• Information about treatment at transfers
• Specialist and generalist not talking
• Continuity of care poor
Communication between services and
professionals
“The handover from hospital to general practitioner
and the handover from the general practitioner to
out-of-hours general practitioner can be much
better. [...] it is a bottleneck that the general
practitioner sometimes doesn’t know what is going
on at the time the patient is being discharged [...].”
(Professor in palliative oncological care, The
Netherlands)
Communication between services and
professionals
“In general, specialised palliative care personnel are
consulted too late” (Palliative Care Physician,
Germany)
Communication between patients/family and
professionals
• Particularly problematic for dementia
– Inability to report or localise pain leading to behavioural
disturbance
• Planning is important to deal with communication
(ACP)
• Not just dementia patients but also cancer with
professionals unable to discuss death
Communication between patients/family and
professionals
• “One of the biggest challenges in the care of
palliative care patients is probably the direct
communication with these patients. To be able to
engage in the living world of these patients - there
is a great need of training in communication for
physicians and nurses.” (Consultant/Advisor for
Palliative Care, Germany)
Communication between patients/family and
professionals
• “[....] Mediterranean Countries lack
communication, we communicate in a bad way, or
we do not communicate at all...this derives from a
paternalism that belongs to us, you know. We are
afraid to say, and this leads to a sort of show, I
call it the lies’ show, where everybody knows but
no one says” (Oncologist, Italy)
What’s next?
• Knowledge of barriers informs strategies for
change
• Pre – post test beginning
• Evaluation of use of quality indicators and
strategies
• Interviewing carers about quality of care
Thank you!
Nathan.davies.10@ucl.ac.uk
www.impactpalliativecare.eu
Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013]
[FP7/2007-2011]) under grant agreement n°[258883] .
Disclaimer: The views expressed here are those of the authors and not of the European Commission.