Contributed by Kristin Gozdzikowska, Ph.D., CCC-SLP, Laura Fergusson Trust (Canterbury)
From 2014 to 2019, the number of people who own a smartphone worldwide more than doubled, nearing 3 billion individuals. Now, more than ever, people of all ages and backgrounds are connected, controlling an increasingly customised environment for on-demand access to media, music, banking, fitness tracking, calendars, social media, maps – the list goes on and on. Why then, does clinical practice at times feel so far removed from this rapidly advancing technological sector?
It has been said that it takes an average of 17 years for new evidence-based findings to reach clinical practice (Balas & Boren, 2000). However, with dropping prices and increasing access, technology is becoming an integral part of clinical care. Rather than expensive equipment, a biofeedback device can be downloaded on a free app. A wearable sensor patch can monitor blood sugar levels, needle-free. A heart-rate rhythm monitor can help improve awareness of emotional state. Simple alarms and wearable prompts can serve as reminders everyday tasks from medications to grocery lists. What’s more, the use of a smart phone can be increasingly socially acceptable for individuals trying to incorporate and generalise strategies in a community setting without drawing unwanted attention to themselves.
By harnessing available, low-cost technologies, unexpected changes can be made as well. For example, Jo Fox, a physiotherapist at Laura Fergusson Trust, is investigating use of a Fit Bit wearable to increase a client’s number of steps. Not only has the client increased physical activity, but early observations revealed unexpected improvements in response to phone calls and texts due to the tactile vibratory feedback when receiving a message. Now, this client has newfound capacity of self-management – no small feat in the world of traumatic brain injury recovery.
It is important to be mindful, however, that much of technology is designed far from the clinical realm, which may exacerbate the divide between research, technology and clinical practice. This reiterates the importance of including end-users in co-design throughout development, which impacts the robustness of experimental solutions and end-user involvement in emerging technologies. This partly inspired the Laura Fergusson Trust, in collaboration with Marcus King (Callaghan Innovation), Jo Nunnerley (University of Otago/BAIL) and Riley Stockwell & Nadia Thorne (Cerebral Fix), to co-design and test a virtual reality (VR) rehabilitation solution for individuals following TBI. VR has potential advantages as real-world stressors can be simulated and systematically introduced. Focus groups were held with people with lived experience of brain injury and clinicians to introduce the concept of VR and discussing possible applications. These groups fed back that a café setting would be most beneficial. In the newly developed game, users complete functional tasks in an increasingly loud and distracting café environment to increase their awareness of effects of cognitive fatigue after brain injury. Not only was VR well tolerated, after trying the co-designed prototype, one individual with lived experience of TBI stated,
“You put us in the exact right environment, this is exactly what happens when we’re out.”
Future research is currently underway to trial clinical implementation of this VR rehabilitation tool. In the meantime, it is clear this study provides important insights on the value of patient perspectives when developing technology for research and clinical practice. By partnering with individuals with lived experience and interdisciplinary teams, we can further harness the rapidly growing benefits of technology into health.
For more information contact Kristen via: Kristen@lftcant.co.nz
Fiona Kumfor (The University of Sydney) won the NZRA Best Poster Presentation award for her poster presentation entitled: ‘Prevalence and neurocognitive basis of delusions in dementia’
Fiona aimed to examine the prevalence, clinical and cognitive profile of delusions in a large, diverse cohort of dementia patients. Delusions and abnormal belief formation have been reported in some people with dementia, however, the mechanisms causing their emergence are poorly understood.
In the cohort, 48/487 patients (9.9%) had delusions, with the highest prevalence observed in behavioural variant frontotemporal dementia (18.4%) and Alzheimer’s disease (11.8%). A diagnosis of behavioural variant frontotemporal dementia was strongly associated with the presence of delusions (odds ratio = 3.3; p<.001). Comparisons between 30 patients with delusions and 30 matched patients without delusions revealed worse performance on the Addenbrooke’s Cognitive Examination (p=.035), Rey Complex Figure Recall (p=.006), and word repetition (p=.001) in patients with delusions. Notably, the delusions group also had greater impairments in everyday skills (p=.004), stereotypical behaviours (p=.031), sleep disturbances (p=.003), memory problems (p=.012) and mood (p=.017).
Results from the study reveal that delusions are most common in behavioural variant frontotemporal dementia and Alzheimer’s disease, and relatively rare in other syndromes. Both the cognitive and clinical profile of patients with delusions differs, and suggest possible mechanisms for the emergence of delusions in these syndromes. Analyses are underway to examine the neural correlates underpinning delusions in dementia.
Click on the image of the poster to see a full-size version.
Correspondence: Fiona Kumfor; firstname.lastname@example.org
Jesse Shapiro won the NZRA Best Student Presentation award for his oral presentation entitled: ‘No diffusion imaging correlate of paediatric post-concussion syndrome: a TBSS study’
Jesse works with the Murdoch Children’s Research Institute and School of Psychological Sciences, University of Melbourne, Melbourne, Australia.
The analysis formed part of the Take CARe study. Forty-three children were recruited from the emergency department of the Royal Children’s Hospital and underwent magnetic resonance imaging and cognitive screening two weeks post-concussion. The Parent PCSI was used to dichotomise participants into “normal” and “delayed” recovery groups. Analysis of TBSS diffusion metrics: fractional anisotropy (FA), mean diffusivity (MD), axial diffusivity (AD), and radial diffusivity (RD) was completed using nonparametric permutation-based analysis with threshold free cluster enhancement.
No significant difference was found between the normal recovery and delayed recovery groups across all diffusion metrics (p < .05). No significant difference was found on tests of cognition between the normal recovery and delayed recovery groups (p < .05). Two possible explanations for the findings are put forward: that any changes to white matter are too small to be seen by this study, or, the cause of PCS is not structural in nature.
Jesse did a great job of presenting this work in a way that was understandable and engaging. He also addressed issues within the current evidence-base, and specific study design strategies he used to overcome the limitations.
Correspondence: Jesse Shapiro; email@example.com
Felicity Bright was one of two recipients of the inaugural NZRA Emerging Rehabilitation Research Leader award offered in 2017. This award is offered on a biennial basis with a focus on growing rehabilitation research capability in New Zealand. It recognises NZRA objectives to provide leadership, advocate for excellence, and promote interest in and support opportunities for research in rehabilitation in New Zealand. The award makes it possible for an early career researcher to appoint a summer student to undertake seeding work which helps them to advance their rehabilitation research programme.
Felicity used her award to appoint a summer student to undertake a literature review using qualitative meta-synthesis methodology. The review explored how therapeutic relationships and interpersonal communication are perceived and experienced by people experiencing communication disability in stroke rehabilitation.
When people enter rehabilitation with a communication disability after stroke, they often come from a place of vulnerability. Their life and the way they communicate and relate with others has changed significantly. Their sense of self can be altered, partly because rehabilitation providers may not communicate and relate with them in a way which recognises their sense of personhood – who they were and who they are. This can see the patient isolated, feeling invalidated. Our review indicated that the relationships between the person with stroke and their rehabilitation providers were foundational for rehabilitation and developed through the communication between the two parties. Communication did not always need to be successful: what seemed critical was that providers were seen to try to communicate and connect with the patient. People with stroke described a process of reading their provider, evaluating whether they are interested in them as an individual, whether they value the person’s perspective, recognising them as a person who has a contribution to make. When patients had a sense of being validated and respected, it impacted on many things including their confidence and sense of trust in the provider, their engagement in rehabilitation and their hope for the future.
This metasynthesis will inform Felicity's on-going research programme, which centres on relationships and communication in rehabilitation, in particular, projects working with rehabilitation providers, supporting them to embed relational practices in rehabilitation.
Earlier this month, we held a hugely successful national rehabilitation conference with our partners from the Australasian Society for the Study of Brain Impairment. We used this conference as an opportunity to run a kanohi ki te kanohi AGM for 2019, plus to host a breakfast discussion session on the future and direction of the NZRA. The minutes to the AGM are now up on our website. Of note, Nicola Kayes stepped down as president of the NZRA as she had reach the end of her term. A huge thank you to A/Prof Kayes for her enormous contribution to the NZRA, including the coordination of several conferences and for her networking with key stakeholders in Aotearoa. Also standing down, having reached the end of their terms as executive members, were Kath McPerson, Will Taylor, and Max Cavit. Thank you to Kath, Will, and Max, for this long term contribution to the NZRA.
We have several new members joining the NZRA: Dr Leanne Parker (a rehabilitation physician from Southern Cross Health), Annie Jones (Clinical Partner at ACC), and Felicity Bright (a speech language therapist from AUT University). I will be returning to the NZRA Executive after a four year departure, and have accepted the role of President for the next term. Felicity has accepted the role of Secretary for the organisation as well. Staying on the NZRA Executive are: Debbie Snell (as Treasurer), Rachelle Martin, and Peter Larmer.
You can also now check out the profiles of all of the NZRA Exec members on our website.
The NZRA Exec is now meeting once a month. This year, we aim to complete some strategic development work to provide our organisation with a clearer sense of purpose and direction. We are interested in our opportunities to grow and contribute more to the NZ rehabilitation community. We are also interested in increasing diversity within our organisation and its leadership. If you would like to get more involved yourself, please get in touch!
William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, University of Otago, Wellington, New Zealand. Twitter: @DrLevack
The most recent edition of the NZ Rehabilitation Review can be viewed HERE.
We encourage you to check it out, get in the know and join the conversations.
This month we can celebrate some excellent outcomes for rehabilitation-related research funding in NZ!
HRC Emerging Researcher Grant:
HRC Feasibility Grant:
Congratulations to all of these funding recipients, and we look forward to hearing more about your projects in due course.
The NZRA is now calling for applications for the NZRA Emerging Rehabilitation Research Leader studentship.
This award is offered on a biennial basis with a focus on growing rehabilitation research capability in New Zealand. It recognises NZRA objectives to provide leadership, advocate for excellence, and promote interest in and support opportunities for research in rehabilitation in New Zealand.
The award makes it possible for an early career researcher to undertake seeding work which helps them to advance their rehabilitation research programme. The $6,000 stipend can be used to appoint a student to work with you to advance your research programme. See more HERE.
The submission deadline is 08 July 2019. Complete the application form and return to firstname.lastname@example.org
Applicants need to be a NZRA financial member by the submission deadline – if you are not a member, you can join HERE ($25 annual fee).
This month, a handful of kiwis attended the 12th World Congress of Physical & Rehabilitation Medicine in Paris. Quelle chance! For me, this was in part about my work with Cochrane Rehabilitation. Prior to the World Congress, I hosted a two-day meeting in Paris with 18 rehabilitation experts from 12 different countries to workshop a series of projects examining methodological issues in the development of a scientific evidence base for rehabilitation. Specifically, we were discussing the challenges associated with systematic reviews and meta-analysis of clinical trials about rehabilitation interventions. This two-day meeting was funded in part by a Catalyst Seeding grant from the Royal Society Te Apārangi. We had a strong contingent from New Zealand attending this workshop including: A/Prof Jean Hay-Smith, A/Prof Will Taylor, A/Prof Nic Kayes, Dr Rachelle Martin, and myself. One outcome from this meeting will be a series of papers for a Special Issue of the European Journal of Physical & Rehabilitation Medicine to be published early next year. Keep an eye out for it. :-)
[A/Prof William Levack, A/Prof Nic Kayes, and Dr Rachelle Martin embrace the spirit of gonzo journalism at the trade display stands in the`12th World Congress of the International Society of Physical and Rehabilitation Medicine]
One thing that is always fascinating at these large international conferences are the trade displays on offer (see our YouTube video above). Increasingly these trade displays feature the very latest products on the market for robotics, virtual reality, computer games, and other technological devices to aid rehabilitation. There appears to be four main arguments that the developers behind these products propose as reasons to purchase their goods. Firstly, they argue that these technological aids help increase the amount of therapy time for patients. (However, they often still require supervision to implement.)
Secondly, it is proposed that 'gamification' of therapy, i.e. making therapy into a computer game, makes rehabilitation more interesting and engaging for patients, so sustains their attention longer. (This is an assumption worth testing: Is interest in these games really easier to sustain over the long term in comparison to standard exercise regimes?)
Thirdly, these technologies often offer increased precision. So, a robotic exoskeleton on a treadmill with overhead sling suspension might be able to alter the amount of weight that a patient takes through their legs by half of one percent, while providing data, to the minutest of degrees, on how much work a patient is actually investing in the activity. (Again it is worth questioning assumptions: Is this level of control over movement actually beneficial for recovery in the long run, or is it simply important to just be doing something of anything to make gains in rehabilitation.)
Fourthly, some of these technologies are designed to aid movement when patients are too impaired to even initiate any muscle activity - the example of the robotic exoskeleton and sling suspension once again. While "more" is almost always better in rehabilitation, we are yet to see really compelling evidence to indicate the patients using these fancy technologies actually achieve better health outcome in comparison to good ol' fashioned therapy with trained rehabilitation providers. For instance, the Cochrane reviews on both a) treadmill training with body weight support and b) virtual reality based therapy for people with stroke are equivocal in their findings. Treadmill training does not seem any better outcomes overall in comparison to tradition physical rehabilitation after stroke when it comes to regaining the ability to walk independently. Although treadmill training may result in improvements walking speed and walking endurance after stroke (for people are already able to walk a bit), these benefits are really quite small, and not sustained in the long term. Therapy based on virtual reality interventions are also not more beneficial that conventional therapy if offered in the same amount and intensity. If virtual reality activities are used to provide MORE therapy for individual patients (i.e. on top of conventional therapy) - surprise, surprise - this results in better health outcomes. The same however could be reasonably expected of MORE conventional therapy on top of conventional therapy. As noted above, in the case of rehabilitation, more is often better.
Nevertheless, there are some really interesting and innovative ideas being proposed by technology for rehabilitation. Anything that extends therapy opportunities is surely good. The question to ask is what extra benefit is being gain from the money being spent and are their other things, (more therapist hours? community gym membership? peer mentoring?) that might be equally worth spending money on.
Today, I responded to an article in Stuff that was critical of the concept of cultural consultation in research. The article, which you can read here, stated that the Treaty of Waitangi has 'no place in scientific endeavour'. The article was also critical of the University of Otago's requirement for all researchers to incorporate consultation with Ngāi Tahu when planning and implementing research activities. (In fact, researchers at the University of Otago will also consult with local iwi in any region where they conduct research, not just Ngāi Tahu). The author, Bob Brockie, stated that: "I am astonished that a Māori iwi has the audacity to impose these heavy-arm rules on scientists, and more astonished that Otago University has acquiesced in these proscriptive, inquisitorial demands. The only researchers to speak out about these issues seem to be retirees. Young researchers dare not question these moves for fear of being labelled racist and putting their careers at stake."
It's not fear, Bob; it's education. So, in response to this article, I wrote a four-line comment, in Stuff, as follows: "Science is knowledge. Knowledge is power. Power is political. If you think science is not political you are naive. OR you are in power and it suits you to maintain this myth. Retired researchers who complain about positive social change lack education in contemporary perspectives on colonialism. Younger researchers don't want to perpetuate the oppression and arrogance of the older generation."
There were a number of misinformed and misleading responses to this article in general, but in response to my comment, I received the following from Richard Treadgold: "Your comments raise more questions than they answer. What has changed about scientific principles that requires input from Maoris? What scientific heritage justifies an invitation to Maoris to join the discussion? Why are Maoris invited above the Dutch, Korean, Chinese, Irish or any other of our national groups? Why do you call this racist invitation to Maoris based solely on their claimed race as "positive social change" and how can it improve science? Why are younger researchers concerned with the older generation (their elders) more than with the science they study? Why are scientific qualifications insufficient to judge the worthiness of research projects?"
It is impossible to answer all these questions, even superficially, in the 200 word limit of a Stuff.co.nz comments box. And so, here is my 1000+ word response, which I will send a link to via Stuff:
What has changed about scientific principles that requires input from Māori?
Nothing has changed about the physical laws that govern the universe. Of course! But science doesn’t occur in a social vacuum. Nothing is stopping you from building your own fusion engine in your basement, using your own money. But if you are using society’s money to undertake this research (as Universities do) then it is reasonable for that society to set some processes and policies about how that money is spent. Our last National government for instance introduced the ‘National Science Challenges’ and tied this to research funding, which is an example of an explicit political effort to change the direction of research in the country from ‘researcher-led’ to ‘mission-led’ research. Governments have always influenced the direction of research by saying what they choose or do not choose to fund: HRC and MBIE both do this. This is not new.
Here, in New Zealand, we have this founding document called the Treaty of Waitangi, which establishes a partnership between two groups of peoples: the indigenous population and a colonial group. The Treaty of Waitangi remains an important legal, social and political contract, despite there being extended periods of history when the colonial group (incidentally, my ancestors – albeit very indirectly) did not honour it. It is outside the scope of this blog to provide an in-depth discussion of the Treaty or its implications. Suffice to say that when dishing out research funding it is reasonable to have robust process to consider the conduct of that research from the perspective of the Treaty: partnership, participation, and protection. This consultation is not about how to do your statistical calculations, how to run to your DNA sequencer, or how to analyse your histology slides. Instead, this consultation is about asking who benefits from the research, how it will be used, by who, and to what end effect. This is the bit of science that has changed – not the nuts and bolt of ‘doing science’, but the social accountability of the actions and activities of scientists.
What scientific heritage justifies an invitation to Māori to join the discussion?
This question implies that you, Richard Treadgold, believe that you have gained your ‘right’ to engage in science on the basis of what science your ancestors conducted – and perhaps not your direct ancestors even, but people with similar skin colour to you, who were very, very vaguely related to some of your ancestors. This is sounding a teeeeeny bit racist. What social heritage justifies an invitation to Māori to join discussion of the use and application of science in New Zealand? Easy. The Treaty of Waitangi, which established the governance of New Zealand as a partnership between two peoples: see above.
Why are Māori invited above the Dutch, Korean, Chinese, Irish or any other of our national groups?
One: The Treaty of Waitangi. See above. Two: In my area of research, which is in the health sciences, Māori have MUCH worse health outcome than non-Māori. Lower life expectancy. Higher hospitalisation rates. Higher levels of morbidity for pretty much any major health condition. Healthcare is about so much more than popping pills and doing surgery: it is about health systems, health literacy, community engagement, interpersonal relationships and so on. It is perfectly reasonable for Māori to expect to be involved in discussions about health science research intended to improve Māori lives.
Why do you call this racist invitation to Māori based solely on their claimed race as ‘positive social change’?
One: It’s not racist, it’s moral thing to do. Two: In my area of research at least (health care), it produces better research, with more meaningful, translatable results for a group who is less well served, in terms of health outcomes, by New Zealand society. Three: It’s a positive social change because it is about confronting and addressing 170+ years of injustice. I look at race issues in the US and see a dominant colonial group who are too afraid, too arrogant, or perhaps too naïve to openly acknowledge and address the consequences of slavery in their nation. I strongly suspect this has significantly contributed to the failure in the US to address race-based conflict. They suffer as a nation as a result. The situation for the indigenous population in the US is even worse! I am proud of the Treaty we (non-Māori New Zealanders) have with our indigenous population in New Zealand, and when I look to countries like Australia and the US, I am proud of the efforts (however incomplete) being made to confront and rectify problems with it. New Zealander benefits enormously from Māori people and Māori culture. Let's not shit on them.
How can it improve science?
In my area of science – health science – consultation with Māori can and has helped people live longer, healthier lives. It helps by ensuring that interventions designed by non-Māori people can be implemented in the real world of Māori communities. It helps by ensuring that research findings relevant to Māori lives are disseminated to Māori communities. It helps by empowering Māori to lead their own research. It helps through the development of new methodologies to conduct better, more impactful research. How much more ‘improvement’ do you want??
Why are younger researchers concerned with the older generation (their elders) more than with the science they study?
Younger researchers are not concerned with the older generation more than with the science they study. This question can’t be answered because it contains false assumptions, so doesn’t make any sense to begin with.
Why are scientific qualification insufficient to judge the worthiness of research projects?
The ‘worth’ of a research project can be judged on the basis of: a) the quality of the science, b) its ethical implications, c) the potential cost-benefit of its possible outcomes, d) the meaningfulness of the research question being asked. Ethics committees and research funders consider all these things when judging the 'worth' of a research proposal. It is a REALLY bad idea to judge the worth of a research project just on the basis of whether or not the scientist has a qualification. Do I really need to give example of where this went horrendously wrong in history?
In summary, the practice of science changes over time because society changes. Science should not be above the laws and mores of a society. New Zealand society is structured, in part, around the Treaty of Waitangi. This Treaty established a formal agreement between two groups of people to work in partnership, and to protect the indigenous population, and agreements ought to be honoured. Besides, even if we did not have a Treaty, New Zealand (and New Zealand research) is enriched, not diminished, by engagement with our indigenous communities.
Goal setting in rehabilitation is a topic that I have written a lot about of the past ten plus years – both in term of research publications and textbooks. It’s a topic that has a lot of currency with health professionals, and is something that I’m frequently asked to talk about at conferences and workshops. (In fact, I developed a distance-taught postgraduate paper for people wanting to develop their knowledge and skills in this area of clinical practice.)
One aspect of goal setting that I’m often asked to comment on is the use of goal attainment scaling (GAS) as an outcome measure in rehabilitation. In fact, I have a number reservations about goal attainment in general as an outcome measure. My opinion is that goal setting is an extremely important part of the rehabilitation process, but is probably more important for communication of expectations, shared decision making, and motivation of patients and health professionals than it is for demonstrating the effectiveness of rehabilitation services. We have other tools for evaluating health outcomes – namely psychometricallyvalid, standardised outcome measures.
So, recently when I was asked to contribute a chapter on goal setting for the 4th edition of Physical Management for Neurological Conditions (due to be published in 2018), I took the opportunity to explore the topic of using goal achievement as an outcome measure in more detail. Below is a video that I put together to summarise the key points that I raise on this topic in the book chapter. For a more detailed discussion of these issues and for my other latest content on goal setting in neurorehabilitation, I encourage you to get hold of a copy of this textbook when it come out later next year.
(Footnote: The sound in this video is a little sketchy because I filmed it in my home, in a room with a lot of echo, and on an old family camera. There's only so much fixing of sound and image quality one can do after filming it turns out. I'm still learning how to be a rehab YouTuber!)
© 2015 New Zealand Rehabilitation Association, Inc.