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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

Demographic and clinical data, including

patient and family outcomes

At individual patient and family level

Structural, process, and organisational data

Largely at organisational level

Bereavement outcomes

At 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

What to measure?

Donabedian 1980

1. patient

demographics,

clinical data

2. funding and

payment

structures and

flows

Quality of care

3. evaluation

and research

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. Phase of illness

– AN-SNAP modified definitions (validation submitted)

2. Functional status

– Australian modified Karnofsky Performance Scale

– valid, reliable, in cancer & non-cancer, more discriminatory than ECOG

3. Problem severity

– Integrated Palliative care Outcome Scale (+ Views on Care)

– valid, reliable, sensitive to change, brief

4. Family caregiving burden

– Zarit (1 or 6 item) – brief, valid and sensitive to change

What is proposed nationally?

• 2 time points

• Assessment date

• Phase of illness

• Functional status

plus

• Patient problem severity

• Family burden

1. Pain score (IPOS)

2. Breathlessness score (IPOS)

3. Anxiety/distress (IPOS)

4. Depressed mood (IPOS)

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

This workshop was hosted in partnership with Help the Hospices and we would like to extend our gratitude for their help and

contributions

Thank you for your participation in this workshop, for more information please contact francesca.cooper@kcl.ac.uk

or visit our webpage www.csi.kcl.ac.uk/oacc.html