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The Outcomes Assessment and Complexity
Collaborative (OACC)
and a proposed national Data and
Outcomes set
Fliss Murtagh
27 June 2014
OACC – what is it?
• A collaboration across South East London to implement
outcome measures into palliative care practice:
– develop and provide staff training to support the
implementation of these outcome measures
– integrate health information technology to establish
workable ways of capturing and processing data
– provide regular feedback of results to the teams, using
Quality Improvement Facilitators to directly improve patient
and family care
OACC – what is it?
• Extending across London and nationally
• Very much in partnership
– Directly with Help the Hospices
– Also working with:
• Dr Bee Wee, National Clinical Director
• NHS England & Public Health England
• Palliative Care Funding Pilots
• NCPC, Marie Curie and other partners
• An ‘open’ collaborative
CLAHRC South London – what is it?
• CLAHRC – means ‘Collaboration for Leadership in applied
Health Research and Care’
• CLAHRC South London
• Palliative and End of Life Care theme (one of eight)
• Very few CLAHRCs nationally include a specific
palliative and end of life care theme
• Extending the work of OACC across South London
• Connecting into the national level
Short term objectives
• A common set of measures to capture patient
needs and outcomes
– measures which work hard for us (capture needs,
complexity, outcomes and can deliver quality
indicators)
– aligned with other initiatives (Funding Pilots in
England, national MDS, national outcomes initiative,
NICE Quality Standards, ELCQuA)
Medium term objectives
• To implement the common set of measures to capture
patient needs, complexity, and outcomes
• Work towards linked / pooled outcome data
– to better understand the population needs and
outcomes
– to support evaluation of interventions
– to support quality improvement
– to enable realistic and meaningful benchmarking
Long term objectives
• To regularly map casemix-adjusted outcomes
across settings and services
• To support quality improvement
Principles throughout…
• Better care for patients and families
• Inclusivity, patient- and family-centeredness, bridging
evidence and practice
The kinds of data needed
Structural, process,
and organisational
data
Demographic and
clinical data, including
patient and
Bereavement outcomes
At family level
family
outcomes
Largely at
organisational level
At individual
patient and
family level
Social capital and
volunteering
The kinds of data needed
– Demographic and clinical data
– Quality standards or indicators
– Outcome measures
– Experience measures
• Not specifically discussing this
– Safety indicators (mitigation of risk)
• Not specifically discussing this
Quality of care
What to
measure?
1. patient
demographics,
clinical data
2. funding and
payment
structures and
flows
3. evaluation
and research
Donabedian 1980
What is an outcome measure?
• Way of measuring changes in a patient’s health over time
• Outcome = “the change in a patient’s current and future health
status that can be attributed to preceding healthcare”
(Donabedian 1980)
What is a quality indicator?
•
•
•
Norms, criteria, standards, and other direct qualitative and quantitative
measures used in determining the quality of health care
‘explicitly defined, measurable item which reflects the quality of
structure, processes or outcomes of care’ (Campbell SM, 2003 &
Donabedian 1988)
A quality indicator requires explicit and defined components:
– Numerator e.g. number of patients with improvement in pain score
between admission and < 48 hours
– Denominator e.g. total number of patients for whom pain is scored at
admission
– Norm or standard e.g. at least 80% report improved pain
Examples in palliative and end of life
care
•
•
•
Problem severity score (e.g. pain, nausea, SOB, anxiety, depressed mood,
family burden)
Measurement at T1:
– captures main concerns or domains of need (‘ability to benefit’ from
health or social care intervention)
– number, severity and interaction of domains = complexity of needs
– Numerator/denominator/norm = quality indicator
Measurement at T2:
– Change in eg pain score = outcome (change in health status)
At what level are measures
being
i) collected and ii) used?
• Individual level
– To inform the care of an individual
• Service level
– Aggregated from individuals
– To shape and plan services
– Quality assurance
• Population level
– Sample – representative or not
– Whole population
– Commissioning/research
• National and International level
Linking
data
in
this
way
multiplies
its
value
Measures need to be …
• Valid – measure what they should
– Content/face validity – domains of interest included
– Construct validity – corresponds with theoretical constructs/other
measures
• Reliable – can be systematically depended on in a team and over time
– Test - re-test reliability
– Inter-rater reliability
• Sensitive to change – picks up important change
• Clinically applicable
– Brief and not too burdensome to patients, families or staff
Outcome measures also need …
• To work hard for us !!
– Make sense to those using them
– Improve day to day clinical care
– Enable better informed strategic and management decisions
• Locally
• Sector wide
• Nationally
– Serve more than one purpose
• E.g. capture complexity, deliver quality indicators, and
outcomes
What demographic & clinical data
do we need?
•
•
•
•
•
Age
Gender
Ethnicity
Disease
Co-morbidity
What measures for QI & outcomes?
• Patient problem severity – which problems?
• Functional status
• Phase of illness
• Family care-giving burden
These capture complexity …
… but none of these are outcome measures!
What measures for QI and
outcomes?
•
•
•
•
Change in problem severity over time
Change in functional status over time
Duration of phase of illness
Change in family caregiving burden
Now outcome measures !
Measures proposed
1.
2.
3.
4.
Phase of illness
– AN-SNAP modified definitions (validation submitted)
Functional status
– Australian modified Karnofsky Performance Scale
– valid, reliable, in cancer & non-cancer, more discriminatory than ECOG
Problem severity
– Integrated Palliative care Outcome Scale (+ Views on Care)
– valid, reliable, sensitive to change, brief
Family caregiving burden
– Zarit (1 or 6 item) – brief, valid and sensitive to change
What is proposed nationally?
1.
Pain score (IPOS)
• 2 time points
• Assessment date
2.
Breathlessness score (IPOS)
3.
Anxiety/distress (IPOS)
4.
Depressed mood (IPOS)
• Phase of illness
• Functional status
plus
• Patient problem
severity
• Family burden
5.
Spiritual/existential distress
(IPOS)
6.
Family burden (Zarit 1 item)
7.
Overall QoL (VOC)
8.
Are we making a difference?
(VOC)
9.
(Decision-making involvement?)
10. Who is assessing items (IPOS)
Why bother with quality & outcome
indicators?
•
•
•
•
•
•
•
•
Service information – to underpin a service
Service development – inform new directions
Service management – strategic and management decisions
Quality indicator – quality assurance/improvement
Outcome measurement – to show impact
To ensure payment – informing currency or tariff
Research – measuring and evaluating care and interventions, build knowledge
to advance practice
National service provision – to present a detailed description of what services
are provide nationally
Overcoming the challenges
•
•
•
•
•
•
•
•
•
Why is it needed – winning hearts and minds
Defining and mandating common indicators
Overcoming inconsistent and poor quality data
Defining and applying the denominators (clarity, accuracy and
transparency)
Using norms (agreeing standards)
Demonstrating we make a difference – i.e. including outcome measures
Joining it up to gain population-based (not just service-based)
understanding
Variable IT capacity and interoperability
Leadership
Thank you for your participation in this workshop, for more
information please contact [email protected]
or visit our webpage www.csi.kcl.ac.uk/oacc.html
This workshop was hosted in partnership with Help the Hospices
and we would like to extend our gratitude for their help and
contributions