ACP CRIOStudy Design & Early Results

Dr Konrad Fassbender for Dr Jessica Simon, Dr Neil Hagen and the ACP CRIO Collaborative membership

25th Annual PalliativeResearch and Education Days

October 28, 2014

Disclosure

This program of research has received financial support from AIHS.

This program has received in-kind support from AHS, Covenant Health, UofA and UofC.

Relationships with commercial interests:

— Grants/Research Support: None

— Speakers Bureau/Honoraria: None

— Consulting Fees: None

— Other: Employee UofA, Salary Covenant Health

What’s in a name? ACP CRIO

Advance Care Planning and Goals of Care Alberta:

a Population Based Knowledge Translation

Intervention Study

Collaborative Membership:

Dr. Sara Davison

Dr. Sunita Ghosh

Dr. Jayna Holroyd-Leduc

Karen Macmillan

Gordon Self

Dr. Eric Wasylenko

Dr. Robin Fainsinger

Dr. Daren Heyland

Dr. Jonathan Howlett

Nola Ries

Dr. Ann Syme

Tracy Lynn Wityk-Martin

Trainees:Dr. Shannon CunninghamDr. Petra GrendarovaMaryam NesariMarta Shaw

Support Staff:Dr. Patricia BiondoMaureen DouglasLauren Ogilvie

Dr. Neil Hagen

Dr. Jessica Simon

Dr. Konrad Fassbender

Co-Leads:

ACP CRIO Team

KT network

Hot off the press…

Congratulations to Patricia Biondo and Maureen Douglas

The Campus Alberta Health Outcomes and Public Health committee would like to congratulate you for submission of a successful application for funding to support a pan-Alberta gathering of stakeholders in Health Outcomes and Public Health.

Communicating decisions around life sustaining

therapy and end of life care in Alberta

Advance care planning

- Communication process

Personal Directive

- Legal document, names agent

Goals of Care designations

- Medical Order

The Elements of ACP

• Think about your values and wishes

• Learn about your own health

• Choose someone to make decisions and

speak on your behalf

• Communicate your wishes and values about

health care

• Document in a Personal Directive

Goals of Care Designations

A Goal of Care Designation

provides direction regarding:

General intent of care,

Specific health interventions,

Locations of care,

Transfer decisions.

Elements of GCD discussions

• Prognosis “What does this mean for me?”

• Explore patient’s values, understanding, hopes

and fears

• Role & anticipated outcomes of treatments

(comfort, medical, resuscitative)

• Available resources (palliative care, SW, Spiritual)

• Documentation (tracking record, GCD form)

Many Unanswered Questions

1. What are the barriers & facilitators to ACP uptake and readiness to change in Alberta for different stakeholder groups? Will these change with provincial implementation?

2. Are ACP tools effective to engage users, increase knowledge and change behavior? What tailored improvements or methods of implementing tools will change their effectiveness?

3. What are the most informative measures to monitor practice change and communicate results to end-users?

4. What is the impact of ACP/GCD on the trajectory of care and costs for dying patients?

Advance Care Planning and Goals of Care Alberta: a

population based Knowledge Translation intervention study

Knowledge to action cycle

ACP National Framework

From Advance Care Planning in Cabada : National Framework 2012

http://www.advancecareplanning.ca/media/40158/acp%20framework%202012%20eng.pdf

Engagement Education

System Infrastructure

Continuous Quality Improvement

Provincial Policy for ACP GCD

The framework in Alberta

Study contexts

Seniors (supportive living facilities)

Cancer (out-patient clinics)

Chronic Disease (renal and heart failure)

Primary Care

Marginalized Populations (cultural, religious)

What?

Research activities

1. Assess barriers & facilitators and readiness to participate in ACP/GCD from public and HCP perspectives

2. Assess tools for education and engagement & evaluate how best to adapt to local environment

3. Assess indicators to monitor uptake of ACP/GCD & to guide continuous QI

4. Determine the economic consequences of ACP/GCD implementation

Methods

Activity 1: Qualitative, public polls, surveys (patients, HCP, SCN, legal profession)

Activity 2: Qualitative, RCT of video tool, Low & high facilitation interventions, Website usage

Activity 3: Delphi process to develop performance indicators, Dashboard development, Monitor dashboard usage

Activity 4: Retrospective databases CZ vs AB, Prospective analysis of the RCT cohort, Budget impact modeling

How?

1.1 Qualitative studies

• Patients (cancer, RF, HF, SL)

• HCP (MD, RN, allied, administrator)

• Public (3 language/sociocultural groups)

• Collaborative qualitative researcher

group

1 2 3 4 5Year:

Assess Barriers & Facilitators

1.2 Public Polls

1 2 3 4 5Year:

Assess Barriers & Facilitators

1.3 Partnering studies

a) DECIDE (yr 2)

b) SCN survey (seniors, cancer,

cardiovasc & stroke) (yr 1)

c) Lawyers - legal tool kit year (yr 3)

d) ACCEPT - (yr 3 & 5)

1 2 3 4 5Year:

Assess Barriers & Facilitators

2.1 Qualitative feedback on existing tools

a) Via activity 1.1

b) Direct observation of tools in use in

the out-pt clinic context (critical

ethnography)

1 2 3 4 5Year:

Evaluate Tools

2.2 RCT of video effectiveness

• Video vs oral narrative of ACP & GCD

• HF & RF clinic patients

• Piggy back health economic evaluation

1 2 3 4 5Year:

Evaluate Tools

2.3 Observational study of low vs high facilitation

Compare units providing access to resources vs intentional, facilitated initiatives to improve quality/quantity of ACP GCD

1 2 3 4 5Year:

Evaluate Tools

2.4 Use of AHS website

Monitor website use + potential for user

evaluation survey

www.albertahealthservices.ca/advancecareplanning.asp

1 2 3 4 5Year:

Evaluate Tools

3.1 Develop performance indicators

Build on current Delphi process:

Context specific indicators

Patient-related, HCP & admin outcomes

1 2 3 4 5Year:

Monitor uptake

3.2 ACP Alberta dashboard

Create in partnership with AHS IT

Provide benchmark data to HCP and

administrators across the province

1 2 3 4 5Year:

Monitor uptake

3.3 Use of dashboard

Use by HCP & administrators

Aim is to identify the smallest number of

reliable key indicators

1 2 3 4 5Year:

Monitor uptake

4.1 Analysis of existing databases

Calgary vs rest of Alberta for 2004-2012

(i.e. pre & post policy implementation in

Calgary 2008)

1 2 3 4 5Year:

Evaluate outcomes

4.2 Prospective economic analysis with cohort from 2.2

Use Health Services Inventory for the

cohort enrolled in the GCD video study

1 2 3 4 5Year:

Evaluate outcomes

4.3 Modeling future impact of ACP/GCD

Budget impact analysis & policy

implications

Hypothesis: Cost shifting

1 2 3 4 5Year:

Evaluate outcomes

Summary

• Alberta: leading with provincial policy implementation across complex healthcare system

• Resources available

• Opportunity to study the outcomes of the implementation, guide healthcare decision makers and enable KT

• ACCEPT and CRIO both inviting new investigators and collaborators

Early results

Activity 1.1

Activity 1.1 is a qualitative investigation of the attitudes, barriers, facilitators, and readiness of patients, family members, and clinicians to participate in Advance Care Planning. The investigation is taking place with several populations of interest: Cardiac and Cancer (Edmonton), and Renal and Supportive Living (Calgary)

Recruiting to participate in a 1-hour semi-structured interview

Recruitment has been underway since the summer of 2014 and is expected to wrap up by Christmas; active coding and qualitative analysis of transcripts has been going on throughout the recruitment process

Activity 1.1 Recruitment

Clinicians Patients / Residents

Family Members

Total

Cancer 7 3 2 12

Cardiac 4 2 0 6

Renal 2 9 6 17

Supportive Living

8 9 7 24

Total 21 23 15 59

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

HeardofACP? RecognizeACPdefini on?

Discussedwithfamily/friends?

DiscussedwithHCP? Havewri enACP? Haveawri enPersonalDirec ve?

Percentage"Yes"(%)

ACPElement

HQCA2007

ACPCRIO2013

Public polls - increasing ACP engagement Alberta 2007 vs 2013

Domains of behaviour change in use of guidelines within health care (Michie et al)

Domains Construct (abbreviated)

Knowledge Knowledge, Scientific Rationale, Procedural Knowledge

Skills Skills, Competence, Skill Assessment

Social/Prof. Role/Identity Identity, Professional Identity, Roles, Boundaries

Beliefs about Capabilities Self-Efficacy, Empowerment, Self-Esteem, Control

Beliefs about Consequences Outcome expectations, Regret, Attitudes, Reward/Sanctions

Motivation and Goals Intention, Goals, Priorities, Commitment

Memory & Decision Process Memory, Attention Control, Decision Making

Environmental Context Resources (Material or Other)

Social Influences Social Support, Group Norms, Conformity, Leadership

Emotion Affect, Stress, Regret, Fear, Threat

Behavioral Regulation Goals, Implementation Intention, Self Monitoring

Nature of the Behavior Routine, Automatic Habit or Breaking a Habit,

Optimism Hope for Improvement/Change

Reinforcement Behavioral Reinforcement (intended and unintended)

DOMAIN ELEMENT n=51 %

Public/patient factors

Insufficient public engagement Public misunderstanding

4341

8480

Systems factors

Conflict because of too many other AHS initiativesLack of infrastructure, especially expert staff Ineffective public awareness campaign

424037

827873

ResourcesAdequate time for ACP/GCD conversations Need for electronic record capability to track GCD orders and ACP conversations

40

35

78

69

Health care provider factors

Health Care Provider’s mastery of GCD Ineffective staff education program Emotional discomfort initiating ACP / GCD conversations

312625

615149

Strategic Clinical Networks Survey

Major barriers were identified across three SCNs: Cancer, Seniors, and Cardiovascular and stroke

Drs. Hagen, Howlett, Holroyd Leduc, Sharma

Key enablers to mitigate these barriers

DOMAIN ELEMENT

Public/patient factors

Develop an impactful public awareness campaign so that patients and families are better prepared to participate in discussions

Systems factors Leadership to communicate the high priority of ACP/GCDfor frontline staff

Resources Develop an electronic record to track ACP and GCDconversations

Health care provider factors

Provide HCP with training on conversation scripts and simple messages on ACP/GCD to promote comfort with the conversations

Identified facilitators via focused discussion with CC SCN

HCP survey and Behaviour Change Wheel

Slide from Dr Jayna Holroyd-Leduc

Summary of evaluation outcomes by healthcare setting (n=37)

Indicator Community Primary

care

Out-pt

clinics

Acute

care

Continuing

care

Multiple

settings

Total

# of studies reporting the indicator (n)

Patients’ EOL treatment preferences are documented 1 2 3 3 17 5 31

Evidence that ACP discussions have occurred 1 1 2 3 14 3 23

Healthcare resource utilization (e.g. CPR use, hospital

admissions)

0 0 2 0 9 5 16

System processes and infrastructure are in place to

support ACP

0 1 2 2 5 5 15

A medical order is present in the patient’s chart 0 0 0 1 7 6 14

Concordance measures/compliance with EOL treatment

preferences

1 0 0 2 5 4 12

Patient-reported outcomes (e.g. QOL, satisfaction, quality

of care)

0 1 2 1 2 1 7

HCP-reported outcomes (e.g. satisfaction, confidence,

knowledge)

0 0 1 2 1 0 4

Family/caregiver-reported outcomes (e.g. distress, QOL,

satisfaction)

0 0 0 1 1 0 2

Palliative care indicators (e.g. EOL register, EOL care

pathway)

0 0 0 0 1 1 2

Economic outcomes 0 0 0 0 1 0 1

Additional Partnering Studies

GCD in Calgary Zone – 5 years of acute care data

iDECIDE – acute care interventional studies

D2C – patient feedback tool for resident education

Talk to me - seriously ill patients’ views on physician behaviours that influence the quality of end-of-life communication

Thank-you!

konrad.fassbender@ualberta.ca

http://www.acpcrio.org/