A pilot investigation of core outcomes for individuals living in Sydney with Primary Progressive Aphasia: What do people with PPA really want from Speech Pathology?
Tracks
20-minute presentations
20-minute presentation
Adult
Aphasia
Cognitive communication
Dementia
| Friday, June 13, 2025 |
| 10:55 AM - 11:05 AM |
| Hall L, Ground Level |
Overview
Rachel Kingma and Dr Cathleen Taylor-Rubin
Details
⏫ Research insights
⏲️ 10.55am - 11.15am
⌛ 20-minutes
📚 Assumed knowledge of attendees: Intermediate (Some previous learning/working knowledge of topic e.g. treated a few cases)
⏲️ 10.55am - 11.15am
⌛ 20-minutes
📚 Assumed knowledge of attendees: Intermediate (Some previous learning/working knowledge of topic e.g. treated a few cases)
Presenter
Ms Rachel Kingma
War Memorial Hospital Waverley
A pilot investigation of core outcomes for individuals living in Sydney with Primary Progressive Aphasia: What do people with PPA really want from Speech Pathology?
10:55 AM - 11:15 AMPresentation summary
Primary progressive aphasia (PPA) is a complex language led dementia syndrome for which there are currently no disease modifying treatments. With progressive deterioration of communication, an individual’s relationships, mood and everyday life participation decline¹. Investigations of quality of life for people with PPA (pwPPA) ²³⁴ have provided valuable insights to the multi-faceted challenges confronting them. Advances continue to be made in this emerging area of Speech Pathology (SP) practice⁵ and the lived experience of PPA over the patient journey is increasingly becoming better understood⁶.
Speech Pathology interventions are enhanced when driven by a core outcome set informed by lived experience. So, what do pwPPA and their carers want from SP?
In Sydney, four groups (three- pwPPA, one- family/friends) were convened at an outpatient rehabilitation service, as the Australian arm of the larger international cross-discipline collaboration which developed a core set of outcomes measures for PPA interventions⁷. Each group was led by a SP not directly involved in the PPA clinic service. Using a Nominal Group Technique⁸ (NGT), participants were asked to respond to one question:
People with PPA: What would you most like to change about your communication and the way PPA affects your life?
Family and friends of people with PPA: What would you most like to change about your family member/friend’s communication and the way PPA affects your life?
For each group, responses were collated and ranked using NGT and a group consensus provided the top three outcomes. Results from individual groups and overall insights from this Australian pilot will be presented.
This presentation describes the ultimate desired outcome of speech pathology interventions identified by our participants with PPA and the important people in their lives. Comparing our Australian pilot results with those of our international colleagues reveals the impact of cultural context.
Speech Pathology interventions are enhanced when driven by a core outcome set informed by lived experience. So, what do pwPPA and their carers want from SP?
In Sydney, four groups (three- pwPPA, one- family/friends) were convened at an outpatient rehabilitation service, as the Australian arm of the larger international cross-discipline collaboration which developed a core set of outcomes measures for PPA interventions⁷. Each group was led by a SP not directly involved in the PPA clinic service. Using a Nominal Group Technique⁸ (NGT), participants were asked to respond to one question:
People with PPA: What would you most like to change about your communication and the way PPA affects your life?
Family and friends of people with PPA: What would you most like to change about your family member/friend’s communication and the way PPA affects your life?
For each group, responses were collated and ranked using NGT and a group consensus provided the top three outcomes. Results from individual groups and overall insights from this Australian pilot will be presented.
This presentation describes the ultimate desired outcome of speech pathology interventions identified by our participants with PPA and the important people in their lives. Comparing our Australian pilot results with those of our international colleagues reveals the impact of cultural context.
References
1. Nickels, L., & Croot, K. (2014). Understanding and living with primary progressive aphasia: Current progress and challenges for the future. Aphasiology, 28, 885–899. doi:10.1080/02687038.2014.933521
2. Douglas, J. T. (2014). Adaptation to early-stage non-fluent/agrammatic variant primary progressive aphasia: A first-person account. American Journal of Alzheimer’s Disease and Other Dementias, 29,289–292. doi:10.1177/1533317514523669
3. Ruggero L, Nickels L & Croot K (2019). Quality of life in progressive aphasia: What do we know and what can we do next? Aphasiology, 33:5,498-519, doi: 10.1080/02687038.2019.1568135: https://doi.org/10.1080/02687038.2019.1568135
4. Summers, A., & Cartwright, J. (2016). Enablers of a positive journey with primary progressive aphasia. Journal of Clinical Practice in Speech-Language Pathology, 18, 15–18. Retrieved from https://www.speechpathologyaustralia.org.au/
5. Taylor, C., Kingma, R. M., Croot, K., & Nickels, L. (2009). Speech pathology services for primary progressive aphasia: Exploring an emerging area of practice. Aphasiology, 23, 161–174.doi:10.1080/02687030801943039
6. Hardy CJD, Taylor-Rubin C, Taylor B, Harding E, Suarez-Gonzalez A, Jiang J, Thompson L, Kingma R, Chokesuwattanaskul A, Walker F, Barker S, Brotherhood E, Waddington, Wood O, Zimmerman N, Jupelli N, Yong KXX, Camic PM, Stott J, Marshall CR, Oxtoby NP, Rohrer JD, Volkmer A, Crutch SJ, Warren JD. Symptom-led staging for semantic and non-fluent agrammatic variants of primary progressive aphasia. Alzheimer’s & Dementia.2024; 20(1): 419-430 doi: 10.1002/alz.13415
7. Volkmer, A. et al (under review): An international core outcome set for Primary Progressive Aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings
Alzheimer's & Dementia: The Journal of the Alzheimer's Association.
8. Wallace SJ, Worrall L, Rose T, LaDorze G, Cruice M, Isaksen J, Kong APH, Simmons-Mackie N, Scarinci N& Guavreau CA. (2017). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability Rehabilitation. 39(14) 1364-1379 doi: 10.1080/09638288.2016.1194899
2. Douglas, J. T. (2014). Adaptation to early-stage non-fluent/agrammatic variant primary progressive aphasia: A first-person account. American Journal of Alzheimer’s Disease and Other Dementias, 29,289–292. doi:10.1177/1533317514523669
3. Ruggero L, Nickels L & Croot K (2019). Quality of life in progressive aphasia: What do we know and what can we do next? Aphasiology, 33:5,498-519, doi: 10.1080/02687038.2019.1568135: https://doi.org/10.1080/02687038.2019.1568135
4. Summers, A., & Cartwright, J. (2016). Enablers of a positive journey with primary progressive aphasia. Journal of Clinical Practice in Speech-Language Pathology, 18, 15–18. Retrieved from https://www.speechpathologyaustralia.org.au/
5. Taylor, C., Kingma, R. M., Croot, K., & Nickels, L. (2009). Speech pathology services for primary progressive aphasia: Exploring an emerging area of practice. Aphasiology, 23, 161–174.doi:10.1080/02687030801943039
6. Hardy CJD, Taylor-Rubin C, Taylor B, Harding E, Suarez-Gonzalez A, Jiang J, Thompson L, Kingma R, Chokesuwattanaskul A, Walker F, Barker S, Brotherhood E, Waddington, Wood O, Zimmerman N, Jupelli N, Yong KXX, Camic PM, Stott J, Marshall CR, Oxtoby NP, Rohrer JD, Volkmer A, Crutch SJ, Warren JD. Symptom-led staging for semantic and non-fluent agrammatic variants of primary progressive aphasia. Alzheimer’s & Dementia.2024; 20(1): 419-430 doi: 10.1002/alz.13415
7. Volkmer, A. et al (under review): An international core outcome set for Primary Progressive Aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings
Alzheimer's & Dementia: The Journal of the Alzheimer's Association.
8. Wallace SJ, Worrall L, Rose T, LaDorze G, Cruice M, Isaksen J, Kong APH, Simmons-Mackie N, Scarinci N& Guavreau CA. (2017). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability Rehabilitation. 39(14) 1364-1379 doi: 10.1080/09638288.2016.1194899
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Rachel Kingma is a highly experienced clinician, service leader, and researcher in the field of adult rehabilitation. Her clinical and research interests include progressive neurological conditions, acquired apraxia of speech and frailty dysphagia rehabilitation.
Dr Cathleen Taylor-Rubin
Uniting War Memorial Hospital Waverley NSW Australia
A pilot investigation of core outcomes for individuals living in Sydney with Primary Progressive Aphasia: What do people with PPA really want from Speech Pathology?
10:55 AM - 11:15 AM**********
Cathy Taylor-Rubin is a speech pathologist based in Sydney Australia. In 2010, with a growing caseload of individuals with Primary Progressive Aphasia, she focused on clinical practice and research in this emerging field. She completed a Master of Applied Science at University of Sydney (2015), focusing on the nature of conversation breakdown in PPA. In her PhD studies at Macquarie University she investigated effective behavioural treatments for improving and maintaining communication for people with PPA and their families and caregivers.
She currently provides assessment, treatment, education and support services for people with PPA from across NSW at a tertiary referral clinic for PPA at War Memorial Hospital Waverley, Sydney. She also conducts a specialist private practice for individuals with PPA and language-led dementia syndromes. Cathy has presented at national and international scientific meetings, caregiver forums and provided education to speech pathology students. She has published in national and international peer reviewed journals.
Cathy is a Certified Practicing Speech Pathologist (CPSP), Practicing Member of Speech Pathology Australia (MSPA), an Honorary Fellow, Macquarie University and Clinical Associate Lecturer, University of Technology Sydney.
Session chair
Stacie Attrill
The University Of Adelaide
Student volunteer(s)
Jade Bullock
Shang Yi Lim
The information contained in this program is current at of the time of publishing but is subject to changes made without notice.
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