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Outcome measurements in neurobehavioural rehabilitation

Elysium Neurological share learnings from The Avalon Centre



Following an extensive review of outcome measures across all Elysium Neurological services, a standardised approach was agreed for each service pathway

The methodology was decided through consultation with experts both within and outside Elysium Healthcare, drawing upon a wide range of knowledge and experience to ensure the most comprehensive outcomes possible to improve patient experience.

Professor Nick Alderman, senior clinical director and head of psychology, Elysium Neurological Services, led the establishment of these uniform outcome measures, which was a significant development in assessing the standard of the care Elysium delivers for the patient, at an individual service level, across a pathway and across the division.

Prof Alderman is a firm believer that outcome measurement should be embedded in the clinical fabric of the service, so that they’re part and parcel of the rehabilitation and neurological support programme and not seen as separate from it.

In this EveryExpert article we discuss how outcome measurement is being used at The Avalon Centre in Wiltshire, a neurobehavioural centre for men and women who have an acquired brain injury, and what impact it is having on patient’s rehabilitation.

Hi Nick, thanks for talking with us today. Could you provide an example of how outcome measurement is being used within a specific Elysium Neurological service?

Nick: “Yes of course, The Avalon Centre is a very good example to use. The men and women at the centre have challenging and complex needs because of their brain injury and require a neurobehavioural rehabilitation programme.

“The centre opened three years ago and we’ve been able to look at outcome measurements for a group of 30 patients. Approximately half of them have been discharged and the remainder are still in rehabilitation.

“Outcome assessments are completed shortly after admission, every three months onwards and repeated at the time of discharge. The outcome data enables the clinical team to see where the patient is in relation to when they were admitted.

“We’ve used five main outcome measurements (SRS; HoNOS-ABI; SASNOS; FIM+FAM; QOLIBRI) and these measures inform the clinical team of everything they need to consider in terms of the rehabilitation programme.”

And what have the results of these outcome measures shown?

Nick: ”The results have been very encouraging and showed a great deal of improvement amongst the patients.

“For those first 30 patients there is evidence that they have made meaningful change. And by that I’m not just talking about statistically significant change, these results show that the size of the difference is beyond the level which for most patients would reflect clinically meaningful difference.

“Tables one and two show results from the FIM+FAM and SASNOS, in many ways these two measures capture some of the most frequently reported outcomes arising from acquired brain injury (ABI).

“The FIM+FAM provides a measure of disability following ABI, comprising 30 items that predominantly reflect either motor or cognitive difficulties, together with a further 6 items relating to extended activities of daily living (EADL).” (see table 1)

“The SASNOS contains 49 items concerned with neurobehavioural disability (NBD) which can be sorted into five main domains.

“A preferred method of comparing how much a group of people assessed on two occasions have changed is by calculating what is called effect size. Some researchers and clinicians use statistical tests for this purpose. However, achieving a statistically significant difference between scores which implies patients have improved compared to the first assessment can be problematic in several ways.

“In particular, a difference between group scores that is statistically significant doesn’t indicate whether this is a meaningful difference, one that is sufficient to reflect improvement that is beneficial to patients and their families, and it doesn’t say anything about how large this difference is.

“Both the size of the difference in scores and whether this is likely to be meaningful can be determined by calculating what is called “effect size”. This results in a score of zero or higher.

“The size of the difference is generally held as being ‘trivial’ (less than 0.2), ‘small’ (equal or greater than 0.2, less than 0.5), ‘medium’ (equal of greater than 0.5, less than 0.8) and ‘large’ (equal or greater than 0.8). When considering effect size, a ‘medium’ effect is generally accepted as reflecting meaningful change which is further amplified when this is ‘large’.”

“In the case of the Avalon Centre patients, table one supports that when compared to assessments made shortly after admission, on reassessment, both discharged patients and those still in rehabilitation achieved large meaningful change in three of the four scores from the FIM+FAM. The size in the magnitude of change in EADL scores was medium, but still likely to be great enough to be meaningful to patients and their families.

“As half the group were still in rehabilitation, it may be the case the further improvement by discharge will also elevate the size of the difference to be large.

“Change in scores on the SASNOS was also sufficient to suggest meaningful change within the patient group across all five major domains of NBD, especially reduction in symptoms of cognitive impairment and difficulties with inhibition (see table 2).

“Evaluating change in outcome measures at what is still an early stage in the development of the Avalon Centre was important as it signposted the effectiveness of the clinical programme and the real impact this is having in improving the quality of life and independence of the patients.

“This will also reassure managers and commissioners regarding the effectiveness and quality of the service.”

The results are very impressive and we’ll come back to those again shortly. But I want to talk about the process first, who should be involved in outcome measurements?

Nick: “The whole clinical team – all the clinicians should be on board and involved in completing them, so it’s a meaningful discussion about where should we score this patient which often throws up what the goals will be for the patient, and then how the rehabilitation programme will be tailored to meet these.

“When outcome measures are embedded in the fabric of the service there are benefits both for the patients and for the service itself. But it is not enough for a psychologist or a clinician to use them in isolation, there has to be a clinical context that supports it.

“For example, managers have to be on board and they have to say that yes this is something we want for a service so it will happen.

“The resources, such as computers and appropriate software, should be available to run it all and there needs to be policies to ensure that the outcome measures are completed at the regular intervals that they’re intended. Policy has to underpin outcome measurement to inform the clinicians what they have to do.”

What is the importance of the frequency that outcome measurements are recorded?

Nick: “Typically the first measurements would be taken in week three, after a person has been admitted – the clinical team will wait a few weeks to get to know the individual and allow them to settle into the service.

“But three weeks is also a short enough period to ensure that no meaningful change is likely to have taken place in the first couple of weeks.

“They would then be completed every 3 months following and then at discharge. In the ideal world, there would be follow up post-discharge and the outcome measures completed again, but unfortunately that isn’t possible yet.

“When outcome measures are taken at this frequency, we know that at any stage during a patient’s rehabilitation journey we can track their individual progress and determine their response to rehabilitation.”

It’s clear the benefits of outcome measurements for patients, but what about at a service level?

Nick: “Outcome measurements are not just for measuring how the person changes individually but also to benchmark a service, and inform how we manage all our services.

“For example we have launched a second neurobehavioural hospital service in Staffordshire, called Moorlands Neurological Centre, and the findings from this study have shaped the outcome measures being used in the new service. Data from outcome measurement is also important for commissioners so they can make informed judgements about where to place patients.

“Information from outcome measurements can be used in lots of different ways and for us at The Avalon Centre, it has helped us consolidate our strategic approach. For example, outcome measures have all been incorporated into the electronic patient record, so they are part and parcel of the clinical fabric of the treatment programme. So we’re adopting a different approach to other services, where it might be one or two people in a room going through the outcome measures, perhaps trying to process them as quickly as possible, without any sort of meaningful interaction.

“Within our service, the outcome measures are completed with representatives from the whole team, it’s a group approach. Outcome measurements inform the treatment programmes, rather than being seen as something separate. They are actively used to help set goals for patients and using those outcome measures is a way of showing whether those goals have been achieved or not.

“The ultimate goal is that there will be a dashboard that’s available for the clinicians in Elysium Neurological so that at governance meetings, or any time, we can look at the outcome measures and determine the effectiveness of rehabilitation in a single unit or across a clinical pathway comprising several units through examining group data.”

I imagine this is important for governance and quality as well?

Nick: “Absolutely. Outcome measures provide feedback about a service, it shows what we need to change to make it effective. This data can be be used in clinical governance meetings, it enables open and transparent conversations, so that teams can be proactive and address small issues before they become major ones.

“So for example, if on the SASNOS, on the aggression subscale there is a trivial response, you think, well hang on a minute, this is neurobehavioural rehabilitation and aggression is something that we find quite often, so it would be a difficulty for a highly specialist service to appear ineffective in reducing this.

“However an advantage of the SASNOS is that there’s a threshold, so anyone that’s scoring in the normal range is showing symptoms of that category that you would expect to find within the general population.

“And what we found was, when we looked at the aggression scale, and we’ve seen this in others so it’s not an outlier, is that quite a few patients come into the service that actually don’t have problems with aggression in the first place, it’s other things that they have a problem with.

“Often it’s difficulties with interpersonal behaviour and cognition that bring people into a service, so you can select out patients who you don’t expect to change because that’s not a problem.

“And when we did that with the aggression subscale, when we only looked at patients whose scores were less than you would expect to see in the neurologically healthy population, they showed a large change.

“So that was an interesting way of showing that the programme is targeting the issues that the person is coming in with.

“Sometimes, particularly with issues around restrictive practices, people think the programme is not individualised enough, but the programme is individualised, it always has been, and showing that effect supports the uniqueness of the programme”.

That’s something we haven’t discussed yet, how do outcome measures impact personalisation?

Nick: “When outcome measurement is properly integrated into a daily rehabilitation programme the degree of personalisation for each patient is significantly higher. The programme is genuinely tailored to individual needs because it is constantly being adapted to the data – emphasis is placed where/ when/how a person needs additional support based on their real-life progress which is monitored on an ongoing basis.

“The outcome measures show what the programme needs to address, so if someone is scored on the SASNOS and aggression is something that’s rated as an issue, the programme can be modified to meet the needs of that person so they’re less likely to be aggressive.

“And this also illustrates the importance of having an experienced psychologist available to analyse and interpret the results, because if you look at the data as a whole, all patient scores, versus only scores that exceed the threshold expected in the neurologically heathy population, and compare their scores from admission to where they are now, there’s a big difference.

“But, as discussed earlier, when we filter out the patients for whom aggression is a problem, because they lie underneath the threshold for which aggression is a normal range, then we see interesting results.

“Quite a few patients are coming into the programme who haven’t got aggression problems and their scores will hopefully be within the range of scores for people like you and me. But if we just look at the people who have difficulties, because their score falls below the threshold, and compare their scores from admission to where they are now, there’s a big difference.

“So for the people who are aggressive, the programme is specifically being modified to target that aggression and that is being reflected in the outcome measures when you look at the data in that way, so I think that is a big advantage of the SASNOS.

“So rather than having a programme that tries to tackle every single aspect of neurobehavioural disability, it is personalised. You modify the programme to only try and address the symptoms that are being rated as problematic. This is totally the opposite of a blanket approach with blanket rules. Outcome measures increase the individualisation of a programme.”

The results are very impressive, with real tangible benefits for patient and service. So where do you go from here? How do you build on these results?

Nick: “The success at The Avalon Centre has demonstrated that when the use of outcome measures is thoroughly embedded throughout the service, and integrated into daily clinical practice the benefit for both patient and service is significant and can be replicated across all our services.

“Neurobehavioural outcome data is showing the way for the other four care pathways at Elysium Neurological, in terms of their outcome measures, and demonstrating the value, but my wish is for our impact to have a much wider reach.

“There are numerous issues with the use of outcome measurements in neurological rehabilitation in general, which vary from service to service across the sector.

“The issues range from some services not using outcome measures at all, to those who go through them in a notional way and those who don’t have the expertise to interpret the outcomes. Often they are seen as a separate part of the process, failing to inform goal selection and probably not validly reflecting response to rehabilitation.

“In those cases, the true value of using outcome measures is not fulfilled.

“If we can share our learnings from The Avalon Centre and encourage everyone in neurorehabilitation to embed outcome measurements so they become part and parcel of the clinical fabric, the impact on a patient’s rehabilitation will be huge and make such a positive difference to their lives and the lives of their families.”

*SRS = Social Responsiveness Scale HoNOS-ABI = Health of the Nation Outcome Scales for Acquired Brain Injury SASNOS = St Andrew’s Swansea Neurobehavioural Outcome Scale FIM+FAM = The UK Functional Assessment Measure QOLIBRI = Quality of Life after Brain Injury

Get the latest insights, blogs and news from Elysium Neurological over on their EveryExpert thought leadership hub: elysiumhealthcare.co.uk/neurological/ every-expert/