A new version of the SMART diagnostic system for prolonged disorders of consciousness (PDOC) patients is due to be released in 2017.
It draws from new research and Royal College of Physicians (RCP) 2013 guidelines – and aims to further improve the search for awareness in possible vegetative and minimal consciousness state cases.
SMART detects awareness and functional and communicative capacity where there have been no consistent or reliable responses elicited; and where the individual’s potential function has yet to be fully explored.
It comprises 10 behavioural observation sessions within a one to three-week period, followed by a treatment phase where indicated. It is one of three PDOC assessment tools recommended by the RCP alongside CRS-R and WHIM and is the most detailed and lengthy.
Karen Elliott’s groundbreaking work from 1987 developing a sensory stimulation programme at the UK’s first brain injury unit at the Royal Hospital for Neuro-Disability, laid the foundations for SMART.
Like her fellow SMART pioneers Ros Munday and Helen Gill-Thwaites – with whom she now runs a PDOC-focused consultancy – Dr Elliott has spent decades in establishing and improving SMART and spreading the use of the system nationally and globally.
She took time out of her work on SMART version three to tell NR Times about the future of the system and the wider outlook for PDOC assessment
NRT: What changes can neuro-rehab professionals expect in SMART version three?
KE: We’ve factored in the latest research and RCP guidelines and gathered opinion from clinicians and accredited assessors across the country. We want to make sure SMART is relevant in whatever context it is used. Although already in use by some assessors, a key change is the inclusion of behavioural formal observations. When a family or team member identifies a response, perhaps in a type of therapy, we will now observe that particular session ourselves as part of our assessment.
Why is that an important addition?
SMART is the only recommended tool that includes the viewpoint of the patient’s family and we already interview them about responses and in what situations they see them. We’ve found that it can be quite di cult from somebody’s description of a response to identify whether it’s something purposeful that we could intervene on or whether it could be a reflex response.
We’ve introduced the observation so that we can actually see the response for ourselves. We visit them when they are at their most awake, which may be in the evening or morning, in whatever setting they are in, including the family home.
You’re already doing this as part of the assessment – has it made a difference so far?
We’ve had cases where the formal part of the assessment hasn’t identified functioning or it is unverified. The RCP guidelines identify that you need to be able to reproduce responses in order to be able to diagnose minimal consciousness state. In some cases we’ve been able to identify over 10 sessions that patients are responding to family members, which has identified that the person is minimally conscious rather than vegetative. This in turn has had a significant impact on the resources and funding available to them.
PDOC cases seem more exposed to the threat of misdiagnosis than most others according to various studies. Most recently, in 2015, neurosurgeons at the University of Western Ontario found that a fifth of patients diagnosed as being in a persistent vegetative state showed responsive brain activity via a brain scan. Older studies put the misdiagnosis rate as high as 43%. What’s going wrong?
The only way to assess PDOC is through behaviours; researchers are looking at MRI scanning but it’s not yet a practical way of identifying responses. So it’s very complex with a lot of variables. This is why we believe in 10 assessments over a period of time. One assessment may not give a true picture of awareness levels. Another factor is that people carrying out assessments may not be adequately skilled in PDOC. There are now new SMART standards for assessors to make sure assessments are always carried out to the right level and standard. Every accredited assessor now has to maintain and demonstrate their skills and pass an accreditation every four years which shows they’re keeping up with what’s happening in PDOC. They’ve always been accredited but we’re being more defined about it.
Does the patient’s environment also have a big impact on the accuracy of PDOC- related assessments?
It can certainly influence responses. We always consider the things around the patient and how they might impact the way they respond. It could be something simple, like whether they are positioned in their wheelchair so that they are able to make good eye contact, or could potentially do so. Also, are they positioned so that they could use their arms if they had that ability? Is their spasticity managed so they could respond if they were able to? So it’s about trying to eliminate anything that might mask a response. Other considerations include their drugs regime, nutrition, orthotics they may be wearing and whether they are having regular rest periods.
Critics of SMART say it is a needlessly long and expensive process, especially if you factor in the accreditation needed to carry it out. What do you say to those doubters?
The accreditation is a strength of SMART as there is still a significant level of misdiagnosis around. The RCP guidelines identify that you must have people who know what they are doing to deliver an adequate assessment. Similarly, the fact that the process takes several days is also a strength for the patient. If the information you’re getting about your patient isn’t really robust, there is the potential to misdiagnose them. We want people to choose the most appropriate assessment for the patient, rather over its time or financial cost.
Also, if we’re not sure that SMART is right for a patient, we can provide a current status assessment in one day to establish whether they would benefit from a full assessment.
Having spent the last 30 years improving PDOC assessments and treatment, what keeps you up at night when you consider the future in this field?
I think there is a major challenge in terms of finding long-term placements for PDOC patients where staff have skills over and above nursing care that can provide a suitable environment. This is especially the case for younger PDOC patients. I also think it is vital that assessments are adequately carried out in cases where an application has been made for withdrawal of nutrition and hydration.