School of Health and Rehabilitation Sciences

Queensland Aphasia Research Centre (QARC)​

Optimising the lives of people with Aphasia

Measuring what matters

The aim of this project was to understand how well test scores measure real-life outcomes for people with aphasia.

The project was focused on people with aphasia after a stroke.

Key outcomes of this research

Aphasia tests and hospital data need to measure the unique impacts of aphasia. This helps clinicians and policy makers make better decisions in aphasia care.

 

The opinions of people with aphasia should guide how others understand their test results. This helps to make sure that:

  • Money and support go where they are needed most.
     
  • Treatment decisions are made by patients and clinicians together.
     
  • Aphasia treatments lead to meaningful improvements.
     

Aphasia-friendly research brochure

Title: Understanding important changes in aphasia recovery: A co-designed, aphasia-friendly handout of research results.

 

Authors: Sally Zingelman, Dominique A Cadilhac, Joosup Kim, Marissa Stone, Sam Harvey, Carolyn Unsworth,
Robyn O'Halloran, Deborah Hersh, Kathryn Mainstone, and Sarah J Wallace (2024).

 

Brochure: https://espace.library.uq.edu.au/view/UQ:ff30fa6 (open access)

Background

  • Aphasia test scores inform patients, clinicians, and policy makers about changes in health because of speech and language treatments.
     
  • These changes help people with aphasia and speech pathologists talk together about treatment choices.
     
  • The changes also give policy makers important information about the benefit of aphasia treatments.
     
  • However, we don’t know if changes in aphasia test scores after treatment match what people with aphasia feel is a meaningful improvement.

What did the research involve?

This project included information from more than 8,400 people with stroke in Australia.

Information came from people who participated in:

  • The Australian Stroke Clinical Registry
     
  • The Australasia Rehabilitation Outcomes Centre
     
  • The Constraint Induced or Multi-Modal Personalised Aphasia Rehabilitation (COMPARE) randomised control trial
     
  • The driving quality improvement through Meaningful Evaluation of Aphasia Services project (MEASuRES)
     
  • The Implementation of the CHAT project.

 

This project also involved 5 people with aphasia after stroke and 8 speech pathologists working in aphasia rehabilitation.

  • They joined online focus groups.
     
  • We asked them questions about important changes in aphasia recovery.
     
  • We asked them to vote which answer on our rating scale shows small but important changes to people with aphasia.

What did researchers find?

Some existing tests need adapting to make sure they report information that is relevant to people with aphasia.

Information from hospitals collected in stroke databases needs to include more specific information about the care people with aphasia receive.

Guides need to be developed to help clinicians and policy makers understand aphasia test scores. These guides will give meaningful insights into the outcomes of people with aphasia.

Awards

Sally Zingelman was awarded:

  • National Institute on Deafness and Other Communication Disorders (NIDCD) sponsored Academy of Aphasia Young Investigator Travel Fellowship.
     
  • Best presentation in the category of Neurorehabilitation and Ageing at the School of Health and Rehabilitation Sciences Research Conference.

Funding and acknowledgements

This project was funded and supported by many organisations:

  • Australian Government Research Training Program Grant
     
  • A Medical Research Future Fund
     
  • A National Health and Medical Research Council Partnership Project Grant
     
  • The National Health and Medical Research Council Centre of Research Excellence in Aphasia Recovery and Rehabilitation
     
  • The National Health and Medical Research Council
 
We acknowledge the approved use of data for our research from the:

 

Research publications

Title: A meaningful difference, but not ultimately the difference I would want': a mixed-methods approach to explore and benchmark clinically meaningful changes in aphasia recovery.

Authors: Sally Zingelman, Dominique A Cadilhac, Joosup Kim, Marissa Stone, Sam Harvey, Carolyn Unsworth, Robyn O'Halloran, Deborah Hersh, Kathryn Mainstone, and Sarah J Wallace (2024).

Journal: Health Expectations 27 (4) e14169 1-12.

Article: https://doi.org/10.1111/hex.14169 (open access)

Title: Is communication key in stroke rehabilitation and recovery? National linked stroke data study.

Authors: Sally Zingelman, Sarah J Wallace, Joosup Kim, Simon Mosalski, Steven G Faux,  Dominique A Cadilhac, ... and Monique F Kilkenny (2024).

Journal: Topics in Stroke Rehabilitation, 31(4), 325-335.

Article: https://doi.org/10.1080/10749357.2023.2279804  (open access)

Contact

Contact Sally Zingelman to learn more.

Email: s.zingelman@uq.edu.au

Team

Many people have helped with this research. The core team is:

  • Sally Zingelman
  • Associate Professor Sarah Wallace
  • Professor Dominique Cadilhac
  • Dr Joosup Kim
  • Dr Sam Harvey