www.auscr.com.au

Professor Dominique Cadilhac

How to use stroke data to translate best care into practice: from a clinical and health system perspective

3rd Western Australian Stroke Symposium19 -20 October 2019

@AustStrokeReg

BackgroundNational clinical quality registries:

• ‘One-stop-shop’ for clinicians to access performance data

• Monitor quality of care and outcomes• Provide a resource for research

Evidence-based care (Standard 1.27)

Variation in clinical practice and health outcomes (Standard 1.28)

New Clinical Governance Standards

Professor John Mc Neil

• Established in 2008 to monitor clinical care and health outcomes for patients admitted with acute stroke and TIA

• Follows best-practice national standards for registries

• Opt-out approach, with waiver for deaths in hospital

• Data collected using integrated stroke data management system: Australian Stroke Data Tool (AuSDaT)

• Hospital staff can access online real-time data reports and export their data

• Patient follow-up 90-180 days

AuSCR Management Committee 2010

AuSCR: 10 years and going strong!

AuSCR governance structure

Steering committee

Prof Sandy Middleton

Reperfusion & Telemedicine

Research Task Group

Data LinkageED dataset

working groupData Analysis (Monash Uni)

Management Committee Data Custodian Florey

AuSDATCoordinating Committee

AuSDATCoordinating Committee

New committee: 2020 Quality Improvement New committee: 2020 Quality Improvement

Australian Stroke Coalition

Australian Stroke Coalition

Expanded

dataset

collected

using

AuSDATFirst patient

registered

Major achievements of the AuSCR

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018

Management

committee

established

12 hospitals

participatingLinkage with

National Death

registrations

State-wide

uptake in

Queensland

Pilot linkage

with hospital

data

Major NHMRC

Partnership Grant

AuSCR used

as guide to

create National

Stroke Data

Dictionary

Cross-

jurisdictional

linkage with

hospital data

Ranked high potential

and high performing in

external review

Linkage with

PBS and MBS

peer-reviewed

publications

Influencing policy

and practice

nationally and

internationally

25+

Pilot project

funded

Transition to State government funding for core activities

Hospital participation

Opt-out rate: 2.2%

AuSCR Hospital Participation 85Approved hospitals

91,648Stroke/TIA Episodes

42,509Patients Followed Up

Sites Episodes

QLD 23 36,874

VIC 32 36,237

NSW 15 10,316

WA 3 1,390

TAS 3 3,368

SA 3 3,384

ACT 1 100

10000

20000

30000

40000

50000

60000

70000

80000

90000

100000

2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019

72 sites actively contributing data

10 hospitals joining 2019

1st attempt

• 90 days following admission

• Follow-up form mailed to registrant

2nd attempt

• If no response 6/52 later

• Follow-up form mailed to registrant AND emergency contact

3rd attempt

• If no response 6/52 later (at ~ 180 days)

• Phone follow-up, registrant AND emergency attempted up to three times

Essential to get data to the AuSCR before 90 days so that all 3 follow-up attempts can be made to collect outcomes

AuSCR Patient follow-up 90-180 days

70% response rates from survivors and >60% willing to be contacted againAnnual linkage to national death registrations

Trialling SMS reminders and link to survey in 2020

New to AuSCR: ED optional module

www.auscr.com.au

Designed to capture acute stroke care in ED prior to the patient being transferred to another hospital for further acute management E.g. thrombolysis prior to transfer for ECR

Optional, separate dataset

Live on 1st July 2019

Fever Sugar Swallow (FeSS) – Optional Module

www.auscr.com.au

QASC trial: patients treated in a stroke unit with FeSS protocols had: 15.7% reduction in death and disability 90 days

post stroke

Long-term (median 4.1 years) survival effect

Live on 1st July 2019 Middleton S, et al. Lancet 2011;378:1699-1706

Middleton S, et al. Stroke 2017;48:1331-36.

Adjusted HR=0.77 (95% CI 0.59-0.99)

2017 AuSCR User Survey

68%12%

20%

Do you believe that AuSCR participation has led to improvements in your hospital’s stroke services?

Yes No

Unsure

• Three hospitals previously had no system to collect stroke data

– AuSCR is now their primary data collection tool

• Nine hospitals currently use their data for clinical care reviews

• Seven hospitals use AuSCR for QI

Experience in NSW: AuSCR data for driving local QI

• Data uploads completed monthly following HREC and local site governance approvals

• WA Health extract data from QOKKA database into AuSCR data import template

• AuSCR data import template transferred securely to the AuSCR National Data Manager for upload into the AuSDAT

• Hospitals to distribute patient information sheets to eligible patients to inform of data transfer to AuSCR (allow opt-out)

Planned process for AuSCR in WA

• Access benchmarked data reports for acute/follow-up data

• Export acute and follow up data for local use

• Document a patient as opting out or refusing follow up

• Documenting post discharge death

• Correct erroneous episode data

Use of the Australian Stroke Data Tool

The importance of data quality

www.auscr.com.au

Annual reporting and benchmarking

Data quality includes:

Case Ascertainment report

Data Quality report

Important variables for this process

Type of stroke (used to also verify ICD10 codes)

Date/time admission and discharge

Discharge destination

Disagreement in stroke ICD-10-AM coding

Ryan O, Cadilhac DA, Kilkenny MF. 2019 [In draft]

Alternative principal ICD diagnosis code category n %

Any cerebrovascular disease code (ICD codes: I60-I69)

1,681 65%

Intracerebral haemorrhage 118 5%

Subarachnoid haemorrhage 14

Within 180 days:

70% reduced hazard of death

18-point increase in quality-of-life

Cadilhac DA, Andrew NE, Lannin NA, et al. Stroke; 2017;48:1026-1032

Does improving care make a difference?

Prescription of antihypertensive medication at discharge influences survival following stroke

Patients discharged with antihypertensives have 23% reduced risk of cardiovascular death compared to those not discharged with these agents

Andrew NE, Kim J, Thrift AG, Kilkenny MF, Lannin NA, Anderson C, Donnan GA, Hill K, Middleton S, Levi C,

Faux S, Grimley R, Gange N, Geraghty R, Ermel S, Cadilhac DA. Neurology 2018

Implementation of evidence-based agreed action plan by local team

www.auscr.com.au

Major sub-study undertaken in Queensland

Aim

To determine if active quality improvement interventions

(financial incentives + Stroke123) for acute stroke care are more

effective compared with passive (usual) quality improvement.

Eligibility: Hospitals collecting AuSCR data

Stroke123 Program

From 2014

• Workshop (clinical facilitator)

• Local data with benchmarks

• Education

• Identify barriers and enablers

• Action planning (if time)

• Follow up by facilitator

• Online benchmarked reports

National Clinical indicators

Treated in a stroke unit

Received thrombolysis, if an ischemic stroke

Discharged on an antihypertensive medication

Discharged to the community with a care plan

Queensland hospitals only

Mobilised same or following day of admission

Swallow screen or assessment

Aspirin within 48 hours

Discharged on antithrombotic medication

Primary outcome

• net change in composite score; proportion of 8 clinical indicators achieved [T0 vs T3]

Secondary outcome

• individual processes

• ± action plans

• national comparison (control)

Methods

T0 T1 T2 T32010-12 2012-14 2014 2014-15

Historical practice Financial incentives

$ for stroke unit access

Stroke123 program

Use of Registry dataPost-Intervention

Cadilhac et al. Protocol and statistical analysis plan. Int J Stroke. 2018;13:96-106

Controlled before-after study with four time points

Multivariable analyses adjusted for patient clustering by hospital

Primary (composite) outcome

18% overall change (95%CI 0.12, 0.24) and most (14%) following financial incentives

Pre composite: 57% and Post: 75%

Secondary outcomes

• Action plan: 8% in self-nominated indicators (95%CI 0.01, 0.16)

*stroke unit care, thrombolysis, discharge: antihypertensive & care plan

• Comparison with rest of Australia (composite 4 indicators)*• 17% improvement in Queensland (95%CI 0.13, 0.20)• No change in other parts of Australia (95% CI -0.03, 0.03)

Stages of the STELAR Intervention

Pre-workshop survey of hospital staff involved in providing stroke care

Workshop 1:

Workshop 2:

Support period:

Survey of hospital staff involved in providing stroke careSurvey of hospital staff involved in providing stroke care

Analysis of performance gaps using AuSCR. Discussion of barriers and enablersAnalysis of performance gaps using AuSCR. Discussion of barriers and enablers

Education by local opinion leader. Development of action plan. ‘Change champion’ appointedEducation by local opinion leader. Development of action plan. ‘Change champion’ appointed

External facilitator provides support via email or phoneExternal facilitator provides support via email or phone

PRE-WORKSHOP

WORKSHOP 1

WORKSHOP 2

SUPPORT PERIOD

ACTRN12619001072101 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377509&isReview=true

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377509&isReview=true

33

11

35

52

40

63

9

42

59

39

68

18 19

3123

68

13

37

4838

94

30

79

93

76

0

20

40

60

80

100

Stroke Unit Care tPA for ischaemic stroke Aspirin in less than 48hours (excludes ICH)

Mobilised same day orday after

Oral screen beforemedications

% a

dh

eren

ce

My hospital Peer Hospital State All Benchmark

Benchmark

0

10

20

30

40

50

60

70

80

90

100

%

My hospital vs Other hospitalsSTROKE UNIT CARE

Local impact & outcomesImproved awareness

Motivation for change

“It increased probably 10 peoples awareness of some of the gaps that we have got. ….there are probably things that we can do to improve” H1

“I think that really helped to clarify where we are and where our deficits clearly were, …gets people’s attention, …particularly when you talk about where you sit in relation to peer hospitals, people can relate to that …comparing apples to apples…”H7

Knowledge & skills

• Improved ability to interpret and use AuSCR data

• 86% felt more confident to identify practice gaps

Other benefits of STELAR

96% agreed that the structure of STELAR was effective

for reaching consensus on strategies to improve care

Team collaboration

• Opened discussions about introducing new care practices

• Limited medical & ED participation

• Staff turnover, absences clinical champions

“…made us all a bit more aware of what we have to do as a team….

[now] probably work a bit better as a team, not focusing on your own little

area.Not in the silo as much” H3

Ownership

Hospital administrative datasets(All states and territories)

National Death Index(Australian Institute of Health

and Welfare)

Stroke/TIA registered in the AuSCR

Prior to Stroke/TIA

After Stroke/TIA

• Hospital contactso Admissionso Emergency presentations

• Comorbidities (from ICD-10 coding)

• Mortality• Hospital contacts

o Admissionso Emergency presentations

• Comorbidities (from ICD-10 coding)

In hospital• Clinical characteristics• Evidence-based therapiesPatient-reported outcome measures at follow-up• Quality of life

COMPREHENSIVE DATASET ON THE PATIENT JOURNEY

Kilkenny M et al. Maximising use of data and avoiding data waste: a validation study in stroke research. Med J Aust 2019; 210 (1): 27-31.

Capture the entire continuum of care related to a stroke

• Linear relationship between the EQ-5D VAS at 3-6 months and the overall number of unmet needs at 2 years

• Lower EQ5D subscales scores for mobility, self care and usual activities were associated with unmet physical and psychological health needs

What are we learning from the PROMs data?

Quality of life is poorer for patients with stroke who require an interpreter

0 .5 1 2 4

S e lf -c a re

P a in /d is c o m f o rt

M o b ility

A n x ie ty /d e p re s s io n

U s u a l a c tiv itie s

O d d s r a t io (9 5 % C I)

Problems with:

InterpreterNo interpreter

Patients who require an interpreter more likely to report a median 9-point lowerhealth-related quality of life than those who do not require an interpreter

Kilkenny MF, Lannin NA, Anderson CS, Dewey HM, Kim J, Barclay-Moss K, et al. Stroke. 2018.

What do survivors report at follow-up

Result: ~50% self-reported issues with mood post-stroke (N=1,339)

N=2853; median age 74; 45% female; 60% Ischaemic stroke

57

33

5849 47

43

67

4251 53

0

10

20

30

40

50

60

70

80

90

100

Mobility Self-care Usual activities Pain/discomfort Anxiety/depression

Pro

po

rtio

n o

f p

ati

en

ts

EQ-5D-3L domains

Yes No

100

0Worst imaginable

health state (0=Died)

Best imaginable

health state

10

60

50

40

30

20

90

80

70

Visual analogue scale

Normative population

aged 70-79 years

83

AuSCR QLD

Yes anxiety/depression

60

AuSCR QLD

No anxiety/depression

80

Factors associated with anxiety and depression

Observational study, using Patient level AuSCR data linked to Queensland hospital

admission and emergency data

– Years: 2009-2013

– Anxiety/Depression was assessed using the Anxiety/Depression domain of the EQ-5D-3L

– Comorbidities: ICD-10 codes from last 5 years

Published: Quality of Life Research (July 2018) https://doi.org/10.1007/s11136-018-1960-y

Predicting anxiety & depression at 90 days:

Comorbidities, socioeconomic status & age

X

X

The curvature shows how the effect of age on the predicted probability of reporting anxiety or depression differs across levels of comorbidities and socioeconomic position.

A 35 year old who has 10 comorbidities has ~80% chance of reporting anxiety or depression

A 35 year old with a low socioeconomic position is highly likely to report having issues with anxiety or depression

• Pragmatic, systematic, real world evaluations of stroke care programs

– Melbourne Mobile Stroke Unit: ambulance, emergency and hospital data linkage with AuSCR

– Victorian Stroke Telemedicine program

Other advantages: health system monitoring

Impact and embedding in health policy

Motivating improvement

Acute Stroke Coalition Recognition Awards• Composite score of 9 process of care variables*# greater than

80% (Excellence award)

• Contributed to the achievable benchmark for tPA provision in =70% for the 2018 calendar year

The whole is greater than the sum of parts. Prof Lee Schwamm, Get-with-the Guidelines Stroke, United States

Your data = your ally!

• Worth the effort and time

• Don’t take short cuts

• USE it to make a difference to your service and patients!

More information visit www.auscr.com.au

• National Coordinator Dr Sibilah Breen sibilah.breen@florey.edu.au

Or : dominique.cadilhac@monash.edu

@AustStrokeReg @DominiqueCad

http://www.auscr.com.au/mailto:sibilah.breen@florey.edu.au

AcknowledgementsAuSCR Consortium partners

Initial AuSCR support

Grant funding support

State government support

Other support

Consumer donations

Nancy & Vic Allen Stroke Prevention Grant

Victorian Cardiac Clinical Network

University of South Australia

Industry support:AllerganIpsenBoehringer IngelheimMedtronic

Hospital staff & patients

http://www.google.com.au/imgres?imgurl=http://www.flair.monash.edu.au/images/home/nhmrc.jpg&imgrefurl=http://sipcomcorp.com/3/nhmrc-logo&usg=__jgvGWv-OqSVMapC7tu-wqh6usUI=&h=247&w=648&sz=44&hl=en&start=4&zoom=1&tbnid=dEBYAx6QETIi4M:&tbnh=52&tbnw=137&ei=mpjvUIP2CoyaiAf_-4GQAQ&prev=/images?q=nhmrc+logo&hl=en&sa=X&gbv=2&tbm=isch&itbs=1

Thank you and we look forward to working with

you

@DominiqueCad

dominique.cadilhac@monash.edu

mailto:dominique.cadilhac@monash.edu