On behalf of the Australian NHMRC Centre for Clinical Research Excellence in Aphasia RehabilitationNHMRC grant #569935

People living with aphasia win! Better pathways and rehabilitation options

Linda WorrallDirector, CCRE in Aphasia RehabilitationCo-Director, Communication Disability CentrePostgraduate Coordinator, School of Health and Rehabilitation SciencesThe University of Queensland, Brisbane, Australia.

My assumptions

People living with aphasia should drive services. The patient journey is as important as the outcome. There are evidence-practice gaps along the continuum

of care in aphasia rehabilitation. More cost effective aphasia rehabilitation options are

needed. A united front will give aphasia a louder voice within

stroke care.

Learning outcomes Understand what people with aphasia and their family want. Consider the Knowledge Transfer and Exchange model and

Communities of Practice as a means of closing the evidence-practice gaps.

Evaluate new rehabilitation options such as intensive comprehensive aphasia programs e.g. UQ Aphasia LIFT

Be motivated to support Aphasia United.

Outline Who are we? CCRE in Aphasia Rehabilitation. Goals in Aphasia Project: What do people with

aphasia and their families want = what do SLT’s want for them?

Pathways Project: the Australian Aphasia Rehabilitation Pathway

The LIFT program Aphasia United.

Includes: 12 investigators 9 post docs 24 research affiliates 33 doctoral students ~ 200 clinical affiliates

The NHMRC Centre for Clinical Research Excellence (CCRE) in Aphasia Rehabilitation

This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

Worrall, Togher, Ferguson, Rose, Copland, Nickels, Douglas, Armstrong, Davidson, Ballard, Simmons-Mackie, Gonzalez-Rothi, Power, Godecke, Rodriguez, O’Halloran, Renvall, Rose, Mok, Barnes, McDonald, Whitworth, Meinzer.

Bridging the functional-impairment gap in Australia

Listened to what clients wanted (GAP)

Awarded a large national grant (CCRE)

United under a common goal (Pathway)

Worked together with clients (LIFT)

Goals in aphasia project (GAP)

Worrall, Davidson, Hersh, Ferguson, Howe, Sherratt

This project was funded by NHMRC Grant #401532);

To gain the insider’s perspective into: what people with aphasia and their family want from

aphasia services how speech pathology assisted with their goals of

recovery

To explore and compare the treating speech pathologists’ perception of the clients’ needs and services offered and provided (Not presented here -see Worrall et al, 2010. JIRCD)

Research aims

Participants: People with aphasia (51) at least 2 weeks post-stroke Family members (49) Speech pathologists (36)

Separate semi-structured in-depth interviews Adapted techniques for people with aphasia

Research methodology

Experiences of having aphasia/ family member having aphasia

Priorities/goals at different points post-onset

Aphasia rehabilitation and services experiences

Aphasia services would have wanted

Topic guide for people with aphasia and family members

1. Return to pre-stroke life2. Communication – broad and specific,

confidence, connected to real life3. Information – about aphasia and stroke, about

therapy4. Control and independence5. Dignity and respect6. Social, leisure and work 7. Altruistic and contribution to society8. Physical function and health

What are the goals of people with aphasia? Worrall et al, 2010 Aphasiology.

“No. Needs, yes, but talk… my [points to head], I want to talk is politics and religion.”

“Once you’ve got a name for something, it’s like you’ve got half the problem sorted. You can chase things and you can do things. You mightn’t be able to cure it and everything else but you can understand it more.”

“She [outpatient speech therapist] never had a plan. …

What are your [the therapist’s] goals? Never have

any…An hour…This this this this. “Time’s up. You’re

finished” … [therapist] may have had goals, but I didn’t

see them…Know the goals help you relate to the

subjects.”

“Upstairs, very smart. Downstairs, crap”

[pointing to his head and then his mouth]

What do family members of people with aphasia want? (Howe et al., 2012. IJLCD)

A. For themselves

B. For the person with aphasia

A. What family

members’ want for themselves

1. Information 2. Support

4. Own space & time

6. Hope

5. To be included in

rehab

3. Way to communicate with individual

B. What family members want for person

with aphasia

1. Survival 2. Communication

3. Being independent/

Handling emergencies

5. Stimulation/ Meaningfulness

4. Social

1. They had good and bad experiences of aphasia rehabilitation (Tomkins et al., 2013, Aphasiology,)

2. Their experiences of the health system after the stroke were

very important to them. The journey was important.

3. There was variability in aphasia services

4. There was no “road map” or pathway for what would happen

to them

People living with aphasia told us…

Better pathways for people living with

aphasia

This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

Australian Aphasia Rehabilitation Pathway

Aim of the Australian Aphasia Rehabilitation Pathway

To improve the overall journey for people living with aphasia by developing

a rehabilitation pathway within a knowledge transfer framework

A pathway is a tool that promotes organised and efficient patient care based on the best available evidence and guidelines. A pathway aims to deliver the recommended care to the right person at the right time. Other terms:

– Integrated care pathways– Clinical pathways– Patient journeys– Care maps

(Kwan et al., 2004)

What is a pathway?

Terminology Knowledge Translation (KT) is the process of

improving the uptake of knowledge, or evidence, into practice - with the ultimate aim of improving clinical outcomes.

Knowledge synthesis

The knowledge creation triangle of the Knowledge-to-Action process (Graham et al., 2006)

To enhance knowledge uptake, the evidence needs to be:

- Synthesized- User-friendly

Knowledge Inquiry

Knowledge Synthesis

ProductsTools

Has aphasia evidence been synthesized?

Systematic review (Rohde et al, 2013)

to determine if there were any existing quality clinical guidelines available for stroke and aphasia.

AGREE II tool 19 multidisciplinary stroke and speech pathology

specific clinical practice

ADAPTE Collaboration tool

Systematic Review Results

Systematic review resultsHighest in both AGREEII and ADAPTE evaluations The Australian Clinical Guidelines for Stroke Management (2010) New Zealand Clinical Guidelines for Stroke Management (2010)

Most comprehensive The Royal College of Speech and Language Therapists (2005) aphasia guideline ASHA Aphasia Maps

Therapy focused Evidence-Based Review of Stroke Rehabilitation (Salter et al., 2008) ANCDS evidence reviews (Beeson & Robey, 2006)

Conclusions from systematic review

• No high quality aphasia clinical guidelines across the continuum of care exist

• High quality stroke clinical guidelines contain relevant recommendations for aphasia rehabilitation.

• Collated recommendations from the Australian/NZ stroke clinical guidelines form the basis of our pathway

The tool - The Australian Aphasia Rehabilitation Pathway

Assess barriers / facilitatorsWhat are the barriers / facilitators in relation to the: i. Pathway itself (content / style) ii. Adopters (clinicians / managers)iii. Context / setting (e.g., public

and private service contexts)?

Identify clinical problem Do clinicians perceive a knowledge-action gap in aphasia practice? Is this gap observed?

Identify, review, select knowledge Are clinicians aware of the Aphasia Pathway and do they believe it will fill that gap? How do they perceive guidelines / pathways? Are they using current stroke guidelines? What can we learn from these for our Pathway?

Knowledge InquiryIndividual CCRE research studies

(Acute + rehab + community)

Knowledge SynthesisSystematic Reviews

(CCRE / others)

Tools / ProductsAphasia Pathway

ACTION CYCLE Suggested actions required for implementation of the Aphasia Pathway into clinical practice.

Adapt knowledge locallyWill the Aphasia Pathway be implemented in original form? Will clinicians adapt it to their own contexts and how? How have they adapted currently available guidelines / pathways? What factors are key in deciding to adapt guidelines / pathways?

Select / tailor / implementWhat interventions are successful in implementing guidelines / pathways?

How can the Aphasia Pathway implementation be tailored to identified barriers and facilitators ?

Monitor knowledge use Is the Aphasia Pathway being used and how? If not, are there modifications to assist with re-implementation?

Sustain knowledge useIs Aphasia Pathway use sustained? If not, why not? If sustained, does it get modified further? How do clinicians integrate additional new knowledge into the pathway? What factors predict or contribute to sustained usage of the Aphasia Pathway vs. lack of sustained adoption?

Evaluate outcomes of useWhat is the impact of Aphasia Pathway use compared to current practice measured by direct and indirect measures of:i. Consumer healthii. Adopter behaviour / attitudesiii. Service / system changes.

KNOWLEDGE CREATIONFiltering CCRE research knowledge into more synthesized, user-friendly forms.

How are we developing the pathway? A community of practice (CoP) approach to Knowledge Transfer &

Exchange

CCRE Aphasia Community of Practice: 12 investigators 24 research affiliates 33 doctoral students 200 clinical affiliates Consumer reps from AAA Reps from NSF

Three initial face to face meetings + emailed versions of the AARP for comment using Google documents

S• Targeted resources

linked to evidence• Time saving for

practitioners• One stop shop• Currency• Evidence of better

outcomes when following guidelines

• Emphasis on goal setting

• Educational – professionals need to gain something from them

W• Not integrated with

other professional groups

• Will require time to implement

• Will require maintenance / updating

O• Piloting will increase

awareness and research

• E-Health• Integrate IP activity• Move acute focus

from dysphagia to aphasia

• To get endorsement from larger funding/policy bodies – ACQHS, SPA, NSF

• To influence policy and service provision

T• Maintaining currency• Copyright• Responding to

changing models of care – demoralising/burnout

• Lack of buy in from decision makers

• Cost in making changes

SWOT analysis

Overview of the Australian Aphasia Rehabilitation Pathway (AARP)

Summary

Recommendations & ideal

practice Practical

tips

Prehospital care & staff education

Referral processes

Communication screening by non-

speech pathologists

Clinician/Practitioner perspective

Client/Patient perspective

Resources

RECEIVING THE RIGHT REFERRALS

Within each section

Within each section – Summary

Within each section – Recommendations and ideal practice

It includes resources

Current status of pathway

• Further consensus will use the RAND/UCLA Appropriateness Method (RAM)

• Go live date - end of 2013

• More systematic reviews are needed in specific topic areas

• The perspectives of consumers and expert clinicians will be collected through the Community of Practice

Benefits of KTE via community of practice

• Buy in - increases the chances of uptake

• Relevance to the workplace – regular use will improve sustainability

• Creates dialogue between researchers and stakeholders that flows both ways – identifies evidence gaps and priority research questions

Challenges

• The Community of Practice is a new way of working – not fast.

• Synthesis of evidence is hard.• Making evidence into useable and meaningful tools is

challenging.• Some practice areas have very little research published. • Levels of evidence are not always high.• The creation of a pathway does not mean that it will be

implemented - whole new area of research into what works.

Our current research• Identify the top evidence gaps in aphasia rehabilitation• Identify the top evidence practice gaps in aphasia

rehabilitation in Australia• Identify barriers to implementation of the AARP• Develop evidence-based tailored strategies to overcome

barriers • Evaluate the uptake and effectiveness of the AARP• Measure the overall impact on aphasia rehabilitation in

Australia via a pre-post national clinician’s survey (See Rose et al (in press, IJSLP) for pre- pathway survey results)

Aphasia LIFT

This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

Background Worrall & Copland - UQ Aphasia LIFT =

Language Impairment and Functioning Therapy

Cherney – RIC Intensive Aphasia Program

ICAP = Intensive (5 days a week) Comprehensive (includes all recommendations) Aphasia Program (time limited cohort)

International survey of Intensive Comprehensive Aphasia Programs (ICAPs) (Rose, Cherney & Worrall, in press. Topics in Stroke Rehabilitation)

How many and where?

12 programs met definition – USA 8, Canada 2, Australia 1, UK 1.

University 8, Health care facilities 3, Independent 1.

How many years in existence?

1 to 20 years (Mean: 4.6 years)

How many ICAPs per year?

1-12 ICAPs annually (Mean: 3.13)

ICAP Survey

How many people with aphasia?

On average 6 people with aphasia attend each ICAP (range= 3-10)

Intensity and dosage?

Average 4.75 hours of ICAP service per day and this ranged from 3 to 7 hours

3 to 6 days per week (Mean: 4.5) -12-33 days in total (Mean: 21)

Over an entire ICAP program, a person with aphasia received from 48-150 hours of service (Mean: 101)

Service Delivery

Minimum of 3 hrs/day, 5 days/wk, 2 wks

Completed by a cohort

Targets impairment and activity/participation

• Individual therapy

• Group therapy

• Patient/family education

Common Core Values

Aim to enhance life participation

Compassion, respect, positive outlook

Involvement of family/friends

Individualised treatment goals

Evidence-based interventions

Neuroplasticity principles

Intensive Comprehensive Aphasia Program(ICAP)

Therapeutic effect of an intensive comprehensive aphasia program: Aphasia LIFT

Amy Rodriguez, Linda Worrall, Eril McKinnon, Brooke Grohn, Kyla Brown, Sophia

Van Hees, Jade Dignam, David Copland (in press) Aphasiology

This project is funded by NHMRC Grant # 569935 (CCRE in Aphasia Rehabilitation)

Background to LIFT

Current driving forces in aphasia rehabilitation in Australia

Principles of neuroplasticity - use or lose it, use it and improve it, intensity matters, saliency matters, repetition matters, specificity matters (JSHR, 2008)

Stroke clinical guidelines recommend tailored information, collaborative goal setting, comprehensive assessment, intensive treatment, family involvement, counseling, discharge planning

Strong demand for services in the chronic phase

AIM: To determine the therapeutic effect of Aphasia LIFT on language impairment, functional communication, and communication-related quality of life

Pre-post group design

Three LIFT cohorts combined to establish a single data set

20 hrs/wk 2 wks

17 hrs/wk 3 wks

25 hrs/wk 4 wks

LIFT 1 LIFT 3 LIFT 2

Design

Participants

N = 17

Gender 13M, 4F

Age 18- 79 years

MPO8- 66 months

CAT Overall 39-62

+ Family member

participation10

Eligibility Criteria

At least 6 months post onset LCVA with aphasia

No additional neurological disorders

No uncorrected sensory deficits

English speaking

A positive approach

Partnership with family and

friends

Neuroplasticity-based individual

treatment

Collaborative goal-setting

Training, support, and education

Supportive, aphasia friendly environment

Challenge task

Intensity Matters

Salience Matters

Repetition Matters

Aphasia LIFT (Rodriguez et al., Aphasiology)

Treatment

Last dayChallenge

Task

Daily Impairment

hour

Daily Functional

hour

Daily Group hour

Daily Computer

hour

skill-based: word retrieval, AOS

context-based: conversation, role-playing, supported communication

aphasia education, information exchange, living with aphasia, topic talk, “next steps”

word retrieval, conversational scripting

• Work skill, cooking demonstration, TV interview

Goals

Challeng

e goal

Language Impairment

BNT

Discourse

Outcome Measures

FunctionalCommunication

CETI

Communication- related QOL

ALA(Assessment for

Living with Aphasia)

Assessment at pre-treatment, post-treatment and 4-8 weeks follow-up

• 95% program completion rate

• 97% hours completed

Results

100 %n=9

99%n=2

98%n=1

93%n=1

92%n=2

89%n=1

86%n=1

Results

Impairment level

Great deal of individual variability (Code et al., 2010; Brindley et al., 1989; Mackenzie, 1991)

Small but significant change in naming

Severity was an important factor

Small but significant change in discourse efficiency

Results

Functional communication

Positive and lasting change

Improvements regardless of aphasia severity

Consistent with other programs

Results

Communication-related QOL

Immediate and lasting impact

Improvements regardless of aphasia severity

Some individual variability in self-ratings influenced by

Heightened awareness of communication disability

Expectations for improvement

“Post-course depression” (Brindley et al., 1989) at follow up

Aphasia LIFT…

Yielded positive outcomes across language impairment, functional communication and communication-related QOL

Individual response to treatment was variable, but all participants improved in at least one domain

Current research – comparison to non-intensive LIFT, comparison to usual care, effectiveness in sub-acute care.

Summary

APHASIA UNITED

www.aphasiaunited.org

Rationale

A unified voice for aphasia – to promote unity across national and international stakeholder groups (researchers, clinicians, consumers, payers)

A unified voice for aphasia – to unite people living with aphasia, researchers, payers and clinicians to create one “voice”.

Rationale International health and disability agendas

shape services. Links with peak global health and disability

organizations are important for advocacy and awareness of aphasia.

The World Health Organization has approved the World Stroke Organization as one of their non-governmental organizations in official relations.

Aphasia United is a member of the WSO.

WHO

WSO

AU

is a new peak international organization that aims to bring together the global aphasia community and represent its voice to the World Stroke Organization.

The concept for Aphasia United was first discussed at CAC in Fort Lauderdale, Florida

2011

2012

Inaugural summit held after IARC in Melbourne, Australia January

2013

October 2012

May 2013

Key features: The Movement is a coalition whose

individual and organizational members invest their own resources to carry out activities that will advance the goals of the Movement. They can also raise additional resources for this purpose.

The Movement does not have a chairperson, bank account or budget.

The Movement is managed by a secretariat and an advisory group.

Aug2013 Invited Advisory Committee

members Symposia at stroke and aphasia

conferences

Aug2013

Goals1. Build capacity in aphasia consumer organizations.

2. Guide a consensus process about best practices for aphasia

3. Raise awareness about aphasia by working with WSO

4. Combine the perspectives of researchers, clinicians, and consumers in determining international research priorities.

We can help people living with aphasia win by Listening to what they want.

Delivering the right care to the right person at the right time

Researching best practice intervention options

Uniting to give aphasia a voice.

www.ccreaphasia.org.aul.worrall@uq.edu.au

For specific references j.robins1@uq.edu.au

Further information

There are always opportunities to win!

Goals of speech pathologists (Sherratt et al., 2011)

For person with aphasia Communication Coping and

participation factors Education Evaluation

For family member Lack of/limited goals

or contact Education Communication

training Coping, support, and

participation factors

To compare the goals of people with aphasia and their families to their treating speech-

language pathologists’ goals.(Worrall et al, 2010. JIRCD)

-> Tensions in the goal setting process

Research aim

Communication

Communication for me and my life

Language processing skills

SLPPWA & Family

Importance of relationship

Caring relationship highly valued

Professional task of “rapport building”

SLPPWA & Family

“it was very … hard for me and we didn’t get on so I said well …I’m not going back there because it's useless”

Hope

AcceptanceHope Uncertainty

PWA & Family SLP

“if you haven’t got incentive well you’re sort of you know, all you want is just sit in…a bed“

Unmet needs - Information

Expert knowledgeLack of information

PWA & Family SLP

No way in the world I could understand what they were talking about

Unmet needs - Family members as clients

Aphasia is a family problem

Inclusion & exclusion in rehabilitation

SLPPWA & Family

“[to be involved in his rehabilitation] Because nobody knows him as much as I do.”

Context

Hospital context – many concerns (not goals) - main priority is to go home

Home and community therapy – easier to set real-life goals

SLPPWA & Family

what you might get in... a couple of hours visiting someone in a different environment [e.g. home] it might take you…7 or 8 hour sessions before that comes to the surface [as a possible goal] in clinics.

Translation of goalsit is actually pretty hard to set goals with people with aphasia particularly if [it] …is severe, because the kind of processes that we need to go through are very…a very linguistic based discussion.

I couldn’t quite see where my girl was going with me...and I mean, you can have the folder with all of that on it but I really didn’t have an idea where she was going…

Broad goals Preference for prescriptive sub-goals

SLP

PWA & Family

1. A better understanding of communication and aphasia by all.

2. A relationship centred approach (Beach, 2005)

3. Hope and positivity (Holland, 2007)

4. Meeting unmet needs in information and acknowledging that family

members are clients too

5. Concerns and priorities are better terms for the hospital context; goal

setting is easier in the home setting

6. Better translation and transparency of broad client goals into specific goals

Better goal-setting requires

Translation of evidence (Westfall et al., 2007, JAMA)

Research

Publication

Implementation

17 years