on behalf of the australian nhmrc centre for clinical research excellence in aphasia rehabilitation...
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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 - PowerPoint PPT PresentationTRANSCRIPT
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.
For specific references [email protected]
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