Moving forward on best practices for stroke and aphasia: A Canadian KTE initiative
Aura Kagana, Mark Bayleyb, Nina Simmons-Mackiec,
Sheila Cookd, Jane Brenneman Gibsone, Ellen Hickeyf, Linda Kellowayg, Guylaine Le Dorzeh, Barbara Purvesi, Elizabeth Rochonj, Linda Worrallk
Background
PWA and Family Focus Groups: When key themes were compared to literature, focus group participants identified similar issues:
Stroke patients with aphasia have longer lengths of stay, higher costs of care,
lower rates of returning home and less favorable outcomes overall¹. Aphasia is
included in the ten top stroke research priorities² and a large Canadian study
identified aphasia as the primary factor that negatively impacts quality of life for
stroke patients³. In contrast to recommendations for most physical interventions,
stroke guidelines around the world had few references to aphasia management.
There is therefore a need to develop comprehensive best practice guidelines
(BPG) for aphasia in Canada and to implement a knowledge translation strategy
to influence actual stroke practice.
A lack of clear and practical clinical aphasia treatment guidelines that articulate what aphasia clinician should do & when
A lack of attention paid by the Canadian health care system to support
communication-focused services for the stroke population with aphasia
“I did not receive speech therapy.”
- PWA
“My husband is allowed $500 a year in speech therapy so that is 4
private speech lessons…. It isn’t enough.” - Family Member
“No one told us about aphasia until we got
here [Aphasia Institute].” - Family Member
The importance of monitoring mood in those with chronic and persisting
aphasia
“ One of the nurses recognized symptoms of depression. The
medications made a big difference and was then able to do some
therapy.”
- Family Member
A national group of aphasia researchers, stroke thought leaders, and
practitioners reviewed existing research inventories and BPGs from around
the world. The group examined evidence sources and levels of evidence in
order to identify gaps in evidence and priorities for knowledge translation.
“He had a great big sign over his bed that said APHASIA, that the SLP put on, but the nurses had no idea what it meant.”
- Family Member
“It [Speech therapy] was not enough. They kept me for eight days. I saw a ream of people. I felt I was center stage. It was
nerve racking…”
- PWA
A lack of specialized family support
2. Identify Consumer Perspectives
on Practices - What they want
In order to compare research evidence and best practice recommendations
with expressed needs of consumers, facilitators conducted 90 - minute
focus groups with:
Individuals with mild to moderate aphasia
(N = 8)
Family caregivers
(N = 8)
Conference attendance
Availability of journals
Training in aphasia communication
techniques for SLPs
Availability of communication tools
Online opportunities
3. Identify SLP Perspectives on
Practices - What actually happens
54%
In order to compare research evidence and practice guidelines to what
actually happens in practice, Canadian SLPs were surveyed about their
management of persons with aphasia (PWA).
agreed that they
use BPG’s to
inform practice
Literature Cited
1. Ellis, C., et al.. (2012). One year cost of post-stroke aphasia. Stroke, 43(5):1429-1431.
2. Pollock, A., et al.. (2012). Top ten research priorities relating to life after stroke. The Lancet Neurology, 11(3), 209.
3. Lam, J. M. et al.. (2010). The Relationship of 60 Disease Diagnoses and 15 Conditions to Preference-Based Health-Related Quality of Life in Ontario HospitalBased Long-Term Care Residents. Medical Care, 48(8), 380-387.
4. Canadian Stroke Network; Heart and Stroke Foundation of Canada. Canadian best practice recommendations for stroke care: 2010. Ottawa (ON): Canadian
Stroke Strategy; 2010. Available: http://www.strokebestpractices.ca (accessed 2013 September 6).
5. Sacket, D., et al.. (1997). Evidence-Based Medicine: How to practice and teach EBM. Edinburgh: Churchill Livingstone, p. 3-4.
a. Aphasia Institute, University of Toronto b. UHN - Toronto Rehabilitation Institute, University of Toronto c. Southeastern Louisiana University
d/e. Aphasia Institute f. Dalhousie University g. Ontario Stroke Network h. Université de Montréal, Centre for Interdisciplinary Research in
Rehabilitation of Greater Montreal i. University of British Columbia j. University of Toronto k. University of Queensland
“
Availability of community aphasia services
Adequate SLP resources
Availability of non-registered staff to
increase practice time
“You should take the whole staff in the
acute care hospital and make them
learn about aphasia.”
- PWA
“I am still independent and would
like to get back to my life. Will I
ever be able to, probably not. But I
would like to get a small job, to feel
useful, to feel like I am part of
something.”
- PWA
Based on these data along with a discussion of the gaps and misalignments between existing best practices guidelines, current research, and
expert opinion, the team contributed towards the development of a preliminary set of nine best practice recommendations for stroke and
aphasia that were incorporated into the Canadian Stroke Best Practice Recommendations (Spring 2013)⁴.
Next Steps
Training in aphasia techniques for
community-based care
A team of stroke and aphasia thought leaders recently secured a Canadian Institutes of Health Research (CIHR) Knowledge Transfer and Exchange
(KTE) planning grant (#290592. 2013) to lay the groundwork that will move this agenda forward. At a meeting prior to this Stroke Congress,
thought leaders in both stroke and aphasia were invited to give input on priorities for a knowledge translation strategy related to the new
stroke and aphasia guidelines. The team will use this feedback to inform the development of a grant submission for a large - scale national
implementation strategy designed to improve the care and quality of life for PWA by:
Strong links between hosptial and
community services
“
The need for all team members to
adjust their interventions in a
manner that emphasizes
communication, patient involvement,
and participation in rehabilitation
Accomplishments to date: Revised Best Practice Guidelines for Stroke and Aphasia
Barriers
Enablers
Existing evidence synthesis not clearly integrating family interventions
into aphasia rehabilitation
“I wasn’t allowed to attend [SLP sessions], I had to stand outside the door.”
- Family Member
The need for educational resources that are culturally and ethnically appropriate, and are available in multiple
languages and address the needs of patients with aphasia
“English is not his first language. We had a huge issue related to his inability to communicate, which involved my being
investigated by the police and office of public trustees...all related to inability to commmunicate, and every step of the way,
you know, lawyers, doctors, the police officers etc., no one fully understanding what aphasia meant.” - Family Member
Canadian SLP Survey
Results
Project Procedures & Observations
1. Evaluate Research Evidence
Existing evidence compendiums not giving health care professionals
practical methods to reduce communication barriers through managing
the communication environment
“My husband was young when he had his stroke but the nurses talked to
him like he was an elderly, deaf person. And they would get angry when
he’d call our ‘swim’ when he had to go to the bathroom and then went in
his bed when they didn’t respond.”
- Family Member
Communication intervention is a low
priority... patients’ communication needs
are rarely considered when determining
rehab stays or even candidacy for rehab.
”
BPG need to address different service areas... Clients with aphasia
apend the greater part of their life in the community or in nursing
homes. BPG should address more than communicating basic
needs (activities of daily living).
Evaluating existing evidence and gaps in
relation to best practice guidelines and
ensuring that Canadian Stroke Best
Practice Recommendations reflect current
evidence based on the three components
of Evidence-Based Practice (EBP):
1) Research evidence,
2) Clinical expertise, and
3) Patient/client values⁵;
Initiating a planning process to
promote implementation of
evidence based interventions
for aphasia with focus on the
stroke community in general
and SLP’s in particular
Encouraging scientists and
SLPs to conduct research that
makes sense to the stroke
community