Transcript Spreading practice through the ICF

People living with aphasia win!
Better pathways and rehabilitation options
Linda Worrall
Director, CCRE in Aphasia Rehabilitation
Co-Director, Communication Disability Centre
Postgraduate Coordinator, School of Health and
Rehabilitation Sciences
The University of Queensland, Brisbane,
Australia.
On behalf of the Australian NHMRC Centre for Clinical Research Excellence in Aphasia Rehabilitation
NHMRC grant #569935
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 evidencepractice 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.
The NHMRC Centre for Clinical Research
Excellence (CCRE) in Aphasia Rehabilitation
Includes:
12 investigators
 9 post docs
 24 research affiliates
 33 doctoral students
 ~ 200 clinical affiliates

Worrall, Togher, Ferguson, Rose, Copland, Nickels,
Douglas, Armstrong, Davidson, Ballard, SimmonsMackie, Gonzalez-Rothi, Power, Godecke,
Rodriguez, O’Halloran, Renvall, Rose, Mok, Barnes,
McDonald, Whitworth, Meinzer.
This project is funded by NHMRC Grant # 569935
(CCRE in Aphasia Rehabilitation)
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);
Research aims

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 methodology

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
Topic guide for people with aphasia
and family members

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
What are the goals of people with
aphasia? Worrall et al, 2010 Aphasiology.
1. Return to pre-stroke life
2. Communication – broad and specific,
confidence, connected to real life
3. Information – about aphasia and
therapy
“No. Needs, yes, but
talk…about
my [points to
stroke,
head], I want to talk is
politics and religion.”
4. Control and independence
“Once you’ve
got
a name for
“She [outpatient
speech
therapist]
never had a plan.
5.
6.
7.
something, it’s like you’ve got
…What are
therapist’s]
Dignity and respect
halfyour
the[the
problem
sorted. goals?
You canNever have
chase things
can
do up. You’re
any…An hour…This
thisand
thisyou
this.
“Time’s
Social, leisure and work
things. You mightn’t be able to
“Upstairs,
very had
smart.
Downstairs,
crap”
finished” cure
… [therapist]
may have
goals,
but I didn’t
it and everything
else but
[pointing
toithis
head
andtothen
Altruistic and contribution
togoals
society
you can the
understand
more.”
see them…Know
help
you
relate
the his mouth]
subjects.”
8. Physical function
and health
What do family members of people with
aphasia want? (Howe et al., 2012. IJLCD)
A. For themselves
B. For the
person with aphasia
2. Support
3. Way to
communicate
with individual
5. To be
included in
rehab
A. What
family
members’
want for
themselves
4. Own space
& time
6. Hope
1. Survival
3. Being
independent/
Handling
emergencies
2. Communication
B. What family
members
want for person
with aphasia
4. Social
5. Stimulation/
Meaningfulness
People living with aphasia told us…
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
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
What is a pathway?
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)
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
To enhance knowledge
uptake, the evidence
needs to be:
- Synthesized
- User-friendly
Knowledge
Inquiry
Knowledge
Synthesis
Products
Tools
The knowledge creation triangle of the
Knowledge-to-Action process (Graham et
al., 2006)
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 results
Highest 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
Monitor knowledge use
Is the Aphasia Pathway being used
and how?
If not, are there modifications to
assist with re-implementation?
Select / tailor / implement
What interventions are successful in
implementing guidelines / pathways?
How can the Aphasia Pathway
implementation be tailored to
identified barriers and facilitators ?
Evaluate outcomes of use
KNOWLEDGE CREATION
Filtering CCRE research knowledge into
more synthesized, user-friendly forms.
Knowledge Inquiry
Individual CCRE research studies
(Acute + rehab + community)
Assess barriers / facilitators
What 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)?
Knowledge Synthesis
Systematic Reviews
(CCRE / others)
Tools / Products
Aphasia
Pathway
Adapt knowledge locally
Will 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?
What is the impact of Aphasia Pathway
use compared to current practice
measured by direct and indirect
measures of:
i. Consumer health
ii. Adopter behaviour / attitudes
iii. Service / system changes.
Identify clinical problem
Do clinicians perceive a knowledge-action gap in
aphasia practice? Is this gap observed?
Sustain knowledge use
Is 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?
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?
ACTION CYCLE
Suggested actions required for
implementation of the Aphasia
Pathway into clinical practice.
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
SWOT analysis
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
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
W
• Not integrated with other professional
groups
• Will require time to implement
• Will require maintenance / updating
T
• Maintaining currency
• Copyright
• Responding to changing models of
care – demoralising/burnout
• Lack of buy in from decision makers
• Cost in making changes
Overview of the Australian Aphasia
Rehabilitation Pathway (AARP)
Within each section
RECEIVING THE RIGHT REFERRALS
Recommendations &
ideal practice
Practical tips
Prehospital care &
staff education
Referral processes
Communication
screening by nonspeech pathologists
Clinician/Practitioner
perspective
Client/Patient
perspective
Resources
Summary
Within each section – Summary
Within each section – Recommendations
and ideal practice
Ideal practice: Setting goals
Goal setting should be a dynamic process that is reviewed throughout the continuum of care in order
to reflect client and family context and wishes
Therapists should explain the goal setting process (and the potential benefits) to the client and their
family in an accessible way and assist in the identification of goal areas prior to formal assessment
Collaborative goal setting between the therapist, client and family should primarily focus on goal areas
identified by the client/family with consideration of results from formal and informal assessment
Systems should be established to ensure involvement of people with aphasia and their family as part
of the multidisciplinary team (i.e. MDT goal setting at the client’s bedside)
The ‘SMARTER’ framework could be used to help ensure that goal setting is truly collaborative and
client-centred
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)
Intensive Comprehensive Aphasia Program
(ICAP)
Service Delivery


Minimum of 3 hrs/day, 5 days/wk, 2
wks
Completed by a cohort
Common Core Values
 Aim to enhance life participation
 Compassion, respect, positive
outlook
 Involvement of family/friends

Targets impairment and
activity/participation
 Individualised treatment goals
• Individual therapy
 Evidence-based interventions
• Group therapy
 Neuroplasticity principles
• Patient/family education
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
Design

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
LIFT 1
20 hrs/wk
2 wks
LIFT 3
17 hrs/wk
3 wks
LIFT 2
25 hrs/wk
4 wks
Participants
N = 17
Eligibility Criteria

At least 6 months post onset LCVA with
aphasia

No additional neurological disorders

No uncorrected sensory deficits

English speaking
Gender
13M, 4F
Age
18- 79 years
MPO
8- 66 months
CAT Overall
39-62
+ Family
member
participation
10
Aphasia LIFT (Rodriguez et al., Aphasiology)
Partnership
with family and
friends


Neuroplasticitybased individual
treatment
Collaborative goalsetting

Intensity Matters

Salience Matters
Training, support,
and education

Repetition
Matters
A positive
approach

Supportive, aphasia
friendly
environment

Challenge task
Treatment
Daily
Impairment
hour

skill-based: word retrieval, AOS
Daily
Functional
hour
 context-based: conversation, roleplaying, supported communication
Daily
Group
hour
Last day
Challenge
Task
• Work skill,
cooking
demonstration,
TV interview
 aphasia education,
information exchange, living
with aphasia, topic talk, “next
steps”
Daily
 word retrieval,
Computer
conversational
hour
scripting
Outcome Measures
Language
Impairment
Functional
Communication
Communicationrelated QOL
BNT
CETI
ALA
(Assessment for
Living with
Aphasia)
Discourse
Assessment at pre-treatment, post-treatment and 4-8 weeks follow-up
Results
•
95% program completion rate
86%
89%
n=1
n=1
•
97% hours completed
92%
n=2
93%
100 %
n=1
n=9
98%
n=1
99%
n=2
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
Summary
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.
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.
2011
2012
The concept for Aphasia
United was first discussed
at CAC in Fort Lauderdale,
Florida
Website created
www.aphasiaunited.org
October
2012
January
2013
Inaugural summit held
after IARC in Melbourne,
Australia
Discussion paper
published in World Beat,
ASHA Leader.
May
2013
Governance modelled
on Movement for
Global Mental Health
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.
Aug
Aug
2013
Invited Advisory Committee
members
 Symposia at stroke and aphasia
conferences

Goals
1.
2.
3.
4.
Build capacity in aphasia consumer organizations.
Guide a consensus process about best practices
for aphasia
Raise awareness about aphasia by working with
WSO
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.
Further information
www.ccreaphasia.org.au
[email protected]
For specific references
[email protected]
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
Research aim
To compare the goals of people with aphasia
and their families to their treating speechlanguage pathologists’ goals.
(Worrall et al, 2010. JIRCD)
-> Tensions in the goal setting process
Communication
PWA & Family
Communication for me
and my life
SLP
Language processing skills
Importance of relationship
“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”
PWA & Family
Caring relationship highly
valued
SLP
Professional task of “rapport
building”
Hope
“if you haven’t got
incentive well you’re sort
of you know, all you want is
just sit in…a bed“
PWA & Family
Hope
SLP
Uncertainty
Acceptance
Unmet needs - Information
No way in the world I could
understand what they were
talking about
PWA & Family
Lack of information
SLP
Expert knowledge
Unmet needs - Family members as
clients
“[to be involved in his
rehabilitation] Because
nobody knows him as
much as I do.”
PWA & Family
Aphasia is a family
problem
SLP
Inclusion & exclusion in
rehabilitation
Context
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.
PWA & Family
Hospital context – many
concerns (not goals) - main
priority is to go home
SLP
Home and community therapy
– easier to set real-life goals
Translation of goals
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…
it 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.
PWA & Family
SLP
Broad goals
Preference for prescriptive
sub-goals
Better goal-setting requires
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
Translation of evidence
(Westfall et al., 2007, JAMA)
Research
Implementation
17 years
Publication