NEWS

NEW PUBLISHED ARTICLE
Utility of the Addenbrooke’s Cognitive Examination-III online calculator to differentiate the primary progressive aphasia variants

David Foxe†, Anne Hu†, Sau Chi Cheung, Rebekah M. Ahmed, Nicholas J. Cordato, Emma Devenney, Yun Tae Hwang, Glenda M. Halliday, Nicole Mueller, Cristian E. Leyton, John R. Hodges, James R. Burrell, Muireann Irish, Olivier Piguet

Brain Communications https://doi.org/10.1093/braincomms/fcac161 Abstract video: https://youtu.be/RRAMxKJ6A4E

† These authors contributed equally to the work.

What the study is about
Primary progressive aphasias (PPA) are rare younger-onset dementias that primarily affect speech and language functions. Recent findings suggest that the three variants of PPA (logopenic: lv-PPA; non-fluent: nfv-PPA; semantic variant: sv-PPA) can be distinguished based on their distinct profiles on the subdomain scores of a widely used general cognitive screening test, the Addenbrooke’s Cognitive Examination-III (ACE-III) (Foxe et al. 2021; Leyton et al. 2013). In this study, we investigated the utility of the ACE-III to differentiate the PPA variants based on their item-by-item performance profiles on this test. From these results, we created an interactive ACE-III PPA online calculator which predicts the variant based on a patient’s unique ACE-III item-by-item profile.

What we did
We conducted multinomial regression analyses to establish performance profiles among groups, and R Shiny from RStudio was used to create the interactive ACE-III PPA diagnostic calculator. To verify its accuracy, probability values of the regression model were derived based on a 5-fold cross validation of cases. The calculator’s accuracy was then verified in an independent sample of PPA patients who had completed the ACE-Revised (ACE-R: an older version of this test) and had in vivo amyloid-PET imaging and/or brain autopsy pathological confirmation.

What we found
Our ACE-III PPA diagnostic calculator demonstrates sound accuracy in differentiating the variants based on an item-by-item ACE-III profile. The calculator is freely for clinicians and is suitable for most clinical settings http://shiny.maths.usyd.edu.au/PPA_diagnostic_calc/

The Kevin Walsh encouragement award for the most outstanding masters degree student

After searching and screening, data was extracted from the 16 articles included in the systematic review.  The following synthesised findings were produced:

•         Patients and carers feel generally unprepared to manage at home after discharge
•         Early identification of patients’ post discharge needs allows for appropriate referrals and supports to be organised prior to discharge
•         Patients and carers value participation in the discharge planning process to facilitate considered, organised and timely discharge from hospital
•         The timely presentation, delivery, language used, format and relevancy of information impacts how patients and carers manage their discharge

The research findings indicate that patients and carers are not satisfied with their hospital discharge planning after major trauma.  The discussion proposes and develops the following and other, implications for practice. 

•         Patients and carers should receive education on coping skills, such as hope and resilience, and have access to peer support to assist to them adjust to the effects of their injuries and reintegrate into the community. 
•         Patients may benefit from having a trauma pathway healthcare professional to provide support and advocacy services throughout their hospital admission and after discharge.
•         Patients and carers should be invited to participate in shared decision-making in regard to their healthcare.  This empowers patients and carers to direct their care and ensures that care remains relevant to the individual. 

·        Healthcare professionals should be trained in health literacy skills to enable them to be sensitive towards and understand the information needs and learning style of patients and carers.  This should influence the provision of individualised discharge information that is presented in an easily accessible format for patients and carers.

 I have submitted a manuscript to Disability and Rehabilitation and am awaiting a decision on whether it will be accepted for publication.
Jeanette Collins

In this newsletter, I am pleased to inform all our members that the ASSBI 2023-25 Strategic Plan document has been finalised and was endorsed by the committee at its last meeting. Importantly, this Strategic Plan is, in fact, the first of ASSBI’s 40+ years history. It was an opportunity to document the excellent work that our Society has been doing in its 40 years+ of existence but also to reflect on its goals and aspirations and shape its future in the coming decade.

Initiated by current Past-President Robyn Tate, the drafting of this Plan was 18 months in the making and went through a series of consultations with members, focus groups, and workshops. This document outlines four main strategic priorities: multidisciplinarity, translation of research into practice, strengthen the voice of lived experience, and build long-term sustainability.

As many of you know, these strategies are not entirely new; indeed, ASSBI has for many years being committed to these aspects that underpin relevant and meaningful clinical practice and research, in an inclusive approach. ASSBI, at its core, has an ethos of being an inclusive and multidisciplinary society, that prides itself in supporting and promoting research that makes a difference to the wellbeing of our clinical populations with brain impairment. One important challenge, however, is how to increase further the visibility and participation of people with lived experience in our activities. Undoubtedly, whilst primarily a society for professionals working in the field of brain impairment, our activities must be informed by what our ‘client base’ is, that is individuals with brain impairment, their carers, as well as their family members and friends. And in that respect, we believe that we can do better.

Another challenge is with the long-term sustainability of the Society. The past 2 years have shown us the importance of being prepared and ready to respond rapidly to changes in the world. ASSBI has done extremely well under difficult circumstances in the past two and a half years, and has responded in nimble and flexible ways, as shown by how quickly we were able to pivot to online delivery of conferences, workshops, etc. Some of our activities, however, have suffered and we need to look ahead and ensure that we can proof ourselves against future threats.

All in all, I cannot underscore enough the importance of this document. It will help steer the society over the next three years and ensure that it grows and remains relevant to its members in this rapidly changing world. Six main projects are articulated around the four strategic priorities, three of which will tackled during Year 1 of the Plan. With that in mind, committees have been set up to start working on these projects. You will hear more about these committees in the coming months.

In addition to Robyn, I would like to thank Barbra Zupan, Dana Wong, and Jacinta Douglas, for their contribution to this process, and Regina Hill from Effective Consulting our external consultant for guiding our discussions during its inception. The Strategic Plan is now available on the website. This link goes directly to the Plan: https://assbi.com.au/resources/Documents/ASSBI%20Strategic%20Plan.pdf.

Until next time, stay well and stay safe.

Olivier Piguet, President, ASSBI

I am writing this column fresh out of our 45^th ASSBI Brain Impairment annual conference. Nominally held in Perth, the conference took place online due to uncertain COVID-19 related restrictions in Western Australia, limiting travel and gatherings of large crowds. But what a conference this was! The meeting was a resounding success, and I would like to congratulate the conference organising committee led by Janet Wagland and Michelle Kelly and supported by Margaret Eagers and MERS Events. The program that they put together was of the highest calibre with keynote addresses by international (Lynne Turner-Stokes, UK; Mathilde Chevignard, France) and national (Bruce Powell, Perth; Bronwyn Hemsley, Sydney; Beth Armstrong and Juli Coffin, Perth) speakers. As usual, a series of workshops were held on Day 1 covering topics such as Social media in professional practice, Goal setting in rehabilitation, Care following brain injury for Aboriginal Australians. Following a Welcome to Country by Kerri Colegate, Day 2 started in earnest with a debate on whether machines are the future in diagnosing and looking after people with brain impairment. Two teams, one in favour, the other opposed to the proposition debated fiercely but with great humour and outlined their position, and often finding common grounds. However, there could be only one winner and, in the end, the against team was declared winner by the audience by a fairly convincing margin! Many great papers were presented over the two days covering a wide range of topics, including dementia, rehabilitation, vocation, behaviour and emotion, language to name a few, as well as ‘how to sessions’ on behaviour support and NDIS, use of technology, and many others. In addition to the breadth and quality of science presented, what struck me was that most of the research was, explicitly or not, framed around a person-centred approach. Indeed, the philosophy underlying the majority of the projects presented was to make a difference in the life of people living with a brain injury. The conference concluded with its prize ceremony recognising the work by students. The Kevin Walsh Award went to Jeanette Collins for best presentations by a Master’s student, the Luria Award to Jasvinder Sekhon for best presentation by a PhD student, and the travel award to Vanessa Sharp for outstanding student abstract. Two additional prizes were awarded. First Meaghan MCAllister and the Healing Right Way trial group were the winner of Mindlink Brightwater Award for best interdisciplinary research project in Western Australia. And finally, Suzanne Barker-Collo was awarded the Tate-Douglas prize, for her Brain Impairment article, which was voted best paper of 2021 by the Editorial Board of the journal.

I would also convey my sincere gratitude to Michelle and Janet, who took on the task to organise the meeting, for battling two years of uncertain time and getting this meeting over the line. Indeed, many of you may not know that this meeting was scheduled to take place in 2020, with most of the planning work done in 2019. By the time COVID-19 hit and Australia went into lockdown in early 2020, the organising committee had a full program of international and national speakers lined up. However, rather than throwing the towel, Janet and Michelle took up the challenge and worked on the 2022 conference, hoping for a face-to-face meeting, Unfortunately, the face-to-face meeting was not meant to be but the conference was nevertheless a great success. 

As current ASSBI President, I must confess that I was disappointed by not being able to go to Perth and attend the meeting in person: catch up with old friends and colleagues and meet new ones. Indeed, a conference is so much more than listen to presentations and workshops. It is about connecting and being part of a community: individuals who share interests, passions, and where novel ideas percolate, are discussed, with many evolving into research projects, collaborations for interventions, etc… Often these discussions occur on the sideline, between sessions or around a drink after the last session of the afternoon or during the conference dinner.

Not surprisingly, this is made much more difficult when the conference is held virtually. Nevertheless, social gatherings were held in several locations, including Perth, Sydney, Melbourne, either before or at the end of the conference, where delegates met together for a social occasion and share stories about ASSBI, the conference or other topics. For me, this demonstrates the collegiality of ASSBI, making it much more than simply a group of people interested in brain impairment.

Another advantage of the virtual meeting is the flexibility. With multiple parallel sessions, the choice is wide and therefore the decision to attend one or another session rather difficult. The virtual format, however, solves this problem, in that all presentations from the keynote addresses, invited speakers, paper sessions and data blitzes were recorded and are available to view at your leisure for the next 90 days. So you can listen to the talks that you missed or watch again the ones you enjoyed: what a treat!

Until next time, stay well and stay safe

Olivier Piguet, President, ASSBI

Douglas and Tate Prize

The winner of the Douglas and Tate Prize for best paper published in Brain Impairment in 2021 was Suzanne Barker-Collo for the following paper:

Barker-Collo, S., Theadom, A., Jones, K., Starkey, N., Fernando, K., Kahan, M., Prah, P., & Feigin, V. (2021). Three methods for examining trajectories in the neuropsychological performance across the first 4 years after mild traumatic brain injury. Brain Impairment, 22, 20-33.

The Douglas and Tate Prize was created in recognition of the work of founding editors Jacinta Douglas and Robyn Tate. The winner is selected each year by a panel of Editorial Board members, and receives a cash prize donated by our publisher Cambridge University Press.

More on the journal in the Newsletter

Moving into new housing designed for people with disability: preliminary evaluation of outcomes

Jacinta Douglas, Dianne Winkler, Stacey Oliver, Stephanie Liddicoat and Kate D’Cruz

Disability and Rehabilitation, https://doi.org/10.1080/09638288.2022.2060343

What the study is about 

Adequate housing is universally viewed as one of the most basic human needs. Our home and living arrangements have a strong influence on our quality of life. Yet a substantial number of people with acquired neurological disabilities and complex needs (e.g., brain injury, spinal cord injury, multiple sclerosis) are denied access to their own home and have limited choice in housing and living arrangements. In this study our aim was to investigate the change in individual outcomes for people with disability and complex needs who move into newly built, individualised apartments in the community.

What we did

We interviewed 15 adults with acquired neurological disability (aged 18–65 years)  and completed three primary self-report outcome measures at two time-points (time 1: pre-move and time 2: 6–24 months post-move). Pre-move living arrangements included group homes, residential aged care, private rentals, and living with parents. Post-move living arrangements were individualised apartments built for people with disability. Health, wellbeing, community integration, and support needs were compared across pre- and post-move timepoints.

What we found

Despite the small and heterogeneous sample in this preliminary study, statistically significant improvements consistent with large positive effects were demonstrated in the wellbeing, and community integration of tenants at post-move compared with pre-move. A positive trend commensurate with a large effect was also evident on health post-move. Scores on these three measures improved with increasing time post move. Daily support hours for the group of 15 participants showed an overall reduction. Pre-move the average support hours per participant was 19 h per day; at post-move the average support hours per participant was 16.6 h per day (an average decrease of 2.4 support hours per participant per day). These results demonstrate the positive personal outcomes that can be experienced by people with acquired disability when they have the opportunity to move into individualised housing that reflects their will and preferences. 

In their own words: Empowering people to tell their story after traumatic brain injury - REGISTER

Synopsis:

This webinar will be a fun and lively presentation from a group of people who will share their experiences of having a traumatic brain injury and their unique perspectives on their rehabilitation journeys. The speakers have all been supported to develop their stories as part of their speech pathology programmes and find this to be a very rewarding journey both for their own recovery but also through the valuable contribution they make to others.

Speech pathologist, Dr Melanie Moses will also share her insights into the value of storytelling as a therapy tool. 

Key Learnings:

• 1.     Develop unique insights into lived experience of people with traumatic brain injury and ways to best to engage them in their rehabilitation journey.
• 2.     Understand ways in which supporting clients to tell their story may assist them to develop a range of cognitive-communication and psychosocial skills. 

Date changed to 26th May at 1pm via Zoom

ID: 853 5750 1546

Password: 980189

As I put together these Words from the President, my aim is to write this column without focusing (too much) on the dreaded ‘C’ word. In doing so, I hope that you will indulge me as I share my (slightly meandering) thoughts with you.

It gives me considerable pleasure to start this entry with some good news. It looks like the wish expressed in the closing paragraph of my last ‘Word from the President’ was granted: With the help of a sustained and combined effort to promote the importance of COVID-19 vaccination and expanded infrastructure at multiple levels (federal, State, communities), the proportion of people fully vaccinated is reaching levels (80-90%) that are the envy of many countries around the world (although with considerable variability between urban and regional/remote areas). As a result, people living in Australia are slowly enjoying renewed freedom. Freedom to travel, freedom to engage in physical, social and sporting activities, and, most importantly, freedom to meet with loved ones, friends and families face to face. For many, it will also be the first opportunity to travel overseas and come back without having to quarantine in over 600 days.

Once again, the importance of direct social and physical contacts is not to be underestimated. As reported by many around the world, social interactions have wide ranging benefits that include mental as well as physical health, improved cognition, improved immune system and lower stress levels. We are, and will remain, social animals in need of social interactions.

Pleasingly, the importance and contributions of social interactions to our general wellbeing is also recognised by clinicians and researchers working in the field of brain impairment. Indeed, reviewing the articles published in the past 12 months in Brain Impairment, the journal of ASSBI, no fewer than 25% of accepted submissions covered a topic related to some of aspects of social functioning, such as caregiver support (Wallace et al., doi:10.1017/BrImp.2021.5) compassion and unmet needs (Hennessy & Sullivan), moral cognition (Lloyd et al., doi:10.1017/BrImp.2021.7), reflection on professional practice (Whiffin & Ellis-Hill, doi:10.1017/BrImp.2021.14), or working memory and emotions (Byom et al., doi:10.1017/BrImp.2021.20), in clinical populations as varied as traumatic brain injury, stroke, Parkinson’s disease and multiple sclerosis. If you haven’t done so already, I invite you to read these papers which demonstrate the importance of this topic in clinical practice. More broadly, these articles highlight the breadth and quality of studies published in Brain Impairment, which has enjoyed a marked increase in its impact factor (from 0.96 in 2018 to 1.73 in 2020), an increase that is almost twice as large as similar journals and reflecting its quality and increasing standing in the field.

Finally, as we are fast approaching the end of the year and the festive season, I would like to take this opportunity to thank you all of you ASSBI members for your continuing support of the society and to the ASSBI committee at large for your ongoing contributions and for helping steer this ship during what has been an interesting time (understatement of the year).

Wishing you all a prosperous and healthy 2022 and looking forward to seeing you all in person in May at the 45^th annual ASSBI conference in Perth. 

Olivier Piguet, President