professor linda worrall & dr tanya rose · 2017-02-09 · professor linda worrall & dr...
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Professor Linda Worrall & Dr Tanya Rose
Professor Guylaine Le Dorze
Australian Postgraduate Award
Initiatives in Aphasia Seed Grants
COS consensus meeting support
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WHY A CORE OUTCOME SET FORRESEARCH?1. We use too many different outcome measures
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WHY A CORE OUTCOME SET FORRESEARCH?
2. Are we measuring what matters?
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CORE OUTCOME SETS
• Agreed standardised set of outcomes and outcome measures7
• Do not restrict the measurement of study specific outcomes
• Facilitate data combination, cross-study comparisons, deterrent to selective reporting7-9
• Used in many health areas. See http://www.comet-initiative.org/
• Use encouraged by funding bodies e.g. NHS National Institute for Health Research & European Commission Horizon 2020
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Our project:
What matters?
How can we measure it?
Can we agree on it?
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Wallace, S.J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., Pak HinKong, A., Simmons-Mackie, N., Scarinci, N. & Alary Gauvreau, C. (2016). Disability and Rehabilitation, 1-16. doi:10.1080/09638288.2016.1194899
Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF
Study 1
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WHAT WE DID
• Seven international locations
• Two participant groups: • (1) people with aphasia
(n= 39)
• (2) the family of people with aphasia (n = 29)
• Aphasia severity: mild to severe
• Time post-onset: 4 months to 17 years
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THE NOMINAL GROUP TECHNIQUE
• What would you most like to change about your communication and the way aphasia affects your life?
• Outcomes prioritised by participants and assigned a number value
• Numbers tallied to give a prioritised list of outcomes
• Analysed using qualitative content analysis and ICF coding
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WHAT WE LEARNED
Important outcomes for both people with aphasia and their families span the ICF
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WHAT WE LEARNED
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WHAT WE LEARNED
• Important outcomes for people with aphasia and their families span all components of the ICF.
→ The relevancy and translation of research may be increased by measuring and reporting research outcomes which are important to people living with aphasia.
→ A broad role for clinicians working in aphasia rehabilitation.
→ The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions.
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Wallace, S.J., Worrall, L., Rose, T., Le Dorze, G. (2016). Aphasiology, 1-31. doi:10.1080/02687038.2016.1186265
Which outcomes are most important to aphasia clinicians and managers? An international e-Delphi consensus study.
Study 2
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WHAT WE DID
• Three-round, international web-based Delphi exercise
• Two participant groups : Clinicians (n= 265) & managers (n=53) from 25 countries
• Advertisement through national and international speech pathology and aphasia networks & snowball sampling.
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The question: “In your opinion, what are the most important outcomes (results) from aphasia treatment.”
1709 codes
90 sub-categories
25 categories 4 themes
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WHAT WE LEARNED - TOP 101. Family/carers/significant others understand how to communicate with people with
aphasia – 99% consensus
2. The PWA can communicate with relevant communication partners – 97% consensus
3. The PWA is able to communicate in daily life activities (96%)
4. The PWA is able to communicate their basic needs (95%)
5. The PWA experiences successful communication (95%)
6. Family/carers/significant others understand the nature and extent of the PWA's communication impairment (94%)
7. The PWA is able to participate in life (94%)
8. The PWA has a positive & supportive communication environment and environmental barriers are reduced (94%)
9. Strategies/ techniques used by the PWA generalise from therapy to real-life (94%)
10. The PWA has effective communication (93%)
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WHAT WE LEARNED
• Clinicians and managers identified a broad role for themselves in aphasia treatment
• Important outcomes identified for both people with aphasia and their significant others.
• Top 2 outcomes both related to communication between the PWA and their communication partner: the dyad
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Wallace, S.J., Worrall, L., Rose, T., Le Dorze, G. (In press). American Journal of Speech-Language Pathology.
Core outcomes in aphasia treatment research: An e-Delphi consensus study of international aphasia researchers.
Study 3
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WHAT WE DID
• Three-round, international web-based Delphi exercise
• Carried out between March 2014 and February 2015
• Purposive sampling
• We asked, “What constructs do you believe should be measured as outcomes in all aphasia treatment research?".
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WHAT WE DID
• 80 researchers commenced round 1, with 72 completing the entire survey. High response rates (≥85%) were achieved in subsequent rounds
• 564 codes, 49 sub-categories, 13 categories, 2 themes
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WHAT WE LEARNED
Consensus was reached for 6 outcomes:
1. Language functioning in modalities relevant to study aims;
2. Impact of treatment from the perspective of the person with aphasia (PWA);
3. Communication-related quality of life;
4. Satisfaction with intervention from the perspective of the PWA;
5. Satisfaction with ability to communicate from the perspective of the PWA; and
6. Satisfaction with participation in activities from the perspective of the PWA.
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WHAT WE LEARNED
• Language matters
• The patient perspective matters
→ While measures of language function are
frequently included in aphasia treatment
trials, PROs are infrequently measured.
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SYNTHESIS OF STAKEHOLDERPERSPECTIVES
ICF coding used to identify similarities across stakeholder groups.
A COS for aphasia treatment research should include measures relating to: language; psychological wellbeing; communication; health services; and quality of life
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Wallace, S.J., Worrall, L., Rose, T., Le Dorze, G. (In preparation).
A Systematic Review of Studies Reporting the Measurement Properties of Standardised Outcome Instruments for People with Aphasia.
Study 4
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WHAT WE DID
• Scoping systematic review of all studies reporting the measurement properties of outcome instruments which have been validated with people with aphasia.
• Full text journal articles were identified through searches of PUBMED, EMBASE, and CINAHL databases and through hand searching of journals.
• Secondary searches were performed for outcome instruments identified in the initial search.
• PRISMA guidelines and COSMIN recommendations for systematic reviews of health measurement instruments.
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WHAT WE LEARNED (ORCONFIRMED…)
• We have a lot of outcome measures.
• In total, 184 references for 79 outcome instruments were ultimately included in this review.
• When considered in reference to the ICF, the instruments identified in the current review predominately measured Body Functions (n=49; 62%).
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COS meeting participants (In preparation).
An international consensus meeting to develop a core outcome set for aphasia treatment research.
Study 5
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WHAT WE DID
•Participants in the researcher e-Delphi invited to participate in an international consensus meeting in London on Tuesday.
•We reduced the number of measures using pre-defined criteria
•We considered each remaining outcome measure in terms of its psychometric properties and feasibility (in alignment with published COS guidelines)
•Voted for inclusion in COS.
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WHAT WE LEARNED…
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WHAT WE AGREED ON
Language
The Western Aphasia Battery (WAB-R) (AQ+LQ)
Psychological
General Health Questionnaire (GHQ) 12-item
Communication
The Scenario Test
Quality of Life
Stroke and Aphasia Quality of Life Scale (SAQOL-39)Participation
Outcome measure to be discussed further
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FUTURE DIRECTIONS
•Gaps in measures – treatment satisfaction/patient reported impact of treatment
•Need for a participation measure
•A report on the outcomes of the meeting•Implementation of the Core Outcome Set
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QUESTIONS?
For further informationSarah Wallace
@SarahJWallace
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REFERENCES
1. Elsner, B., Kugler, J., Pohl, M., & Mehrholz, J. (2015). Transcranial direct current stimulation (tDCS) for improving aphasia in patients with aphasia after stroke. Cochrane Database of Systematic Reviews (5). doi:10.1002/14651858.CD009760.pub3
2. Cherney, L. R., Patterson, J. P., Raymer, A., Frymark, T., & Schooling, T. (2008). Evidence-based systematic review: Effects of intensity of treatment and constraint-induced language therapy for individuals with stroke-induced aphasia. Journal of Speech Language and Hearing Research, 51(5), 1282-1299. doi:10.1044/1092-4388(2008/07-0206)
3. Simmons-Mackie, N., Raymer, A., & Cherney, L. R. (2016). Communication partner training in aphasia: An updated systematic review. Archives of Physical Medicine and Rehabilitation. doi:10.1016/j.apmr.2016.03.023Treatment for bilingual individuals (Faroqi-Shah et al., 2010);
4. Lanyon, L.E., Rose, M.L., & Worrall, L. (2013). The efficacy of outpatient and community-based aphasia group interventions: A systematic review. International Journal of Speech Language Pathology, 15(4), 359-374. doi: 10.3109/17549507.2012.752865Maddy, K. M., Capilouto, G. J., & McComas, K. L. (2014). The effectiveness of semantic feature analysis: An evidence-based systematic review. Annals of Physical and Rehabilitation Medicine, 57(4), 254-267. doi:10.1016/j.rehab.2014.03.002Computer therapy for aphasia
5. Zheng, C., Lynch, L., & Taylor, N. (2016). Effect of computer therapy in aphasia: A systematic review. Aphasiology, 30(2-3), 211-244. doi:10.1080/02687038.2014.996521
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REFERENCES6. PCORI Methodology Committee. (2013). The PCORI (Patient-Centred Outcomes Research Institute) methodology
report. Retrieved from www.pcori.org/research-we-support/research-methodology-standards
7. Williamson, P. R., Altman, D. G., Blazeby, J. M., Clarke, M., Devane, D., Gargon, E., & Tugwell, P. (2012). Developing core outcome sets for clinical trials: Issues to consider. Trials, 13, 132. doi:10.1186/1745-6215-13-132
8. Clarke, M. (2007). Standardising outcomes for clinical trials and systematic reviews. Trials, 8, 39. doi: 10.1186/1745-6215-8-39
9. Schmitt, J., Langan, S., Stamm, T., Williams, H. C., & Harmonizing Outcome Measurements in Eczema Delphi panel. (2011). Core outcome domains for controlled trials and clinical recordkeeping in eczema: International multiperspective Delphi consensus process. Journal of Investigative Dermatology, 131(3), 623-630. doi: 10.1038/jid.2010.303
10. Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., . . . Gauvreau, C. A. (2016). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 1-16. doi:10.1080/09638288.2016.1194899
11. Wallace, S. J., Worrall, L., Rose, T., & Le Dorze, G. (2016). Which treatment outcomes are most important to aphasia clinicians and managers? An international e-Delphi consensus study. Aphasiology, 1-31. doi:10.1080/02687038.2016.1186265
12. Wallace, S. J., Worrall, L., Rose, T., & Le Dorze, G. (In press). Core outcomes in aphasia treatment research: An e-Delphi consensus study of international aphasia researchers. American Journal of Speech-Language-Pathology.
13. Brady, M. C., Kelly, H., Godwin, J., & Enderby, P. (2012). Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews, 16(5). doi: 10.1002/14651858.CD000425.pub3