Measuring Outcomes for Huntington’s Disease

Measuring healthcare outcomes is an integral aspect of high-quality complex care provision and helps us make informed decisions about how to best care for the people who use our services. The data gathered from these outcomes enables us to predict which individuals might benefit most from a particular therapy or intervention and provides a more in-depth understanding of how the many experts involved in a person’s care can successfully work together.

As part of Elysium Neurological’s commitment to ensure that each and every person receives expert care at every step of their healthcare journey, we have now agreed a set of outcome measures for each service pathway. Professor Nick Alderman, Clinical Director, Neurobehavioural Rehabilitation Services & Head of Psychology, led the project and these outcomes are now being implemented across the division. As he explains, the outcome measures were decided through consultation with experts both within and outside Elysium and will ensure we have the most comprehensive system possible to improve the healthcare pathway.




Nick says: “The use of validated outcome measurement tools are an essential part of providing high-quality person-centred healthcare for individuals, across all conditions and care pathways. When outcome measurement is embedded within a model of working, it benefits an organisation in many different ways. There is a culture of reflection and ongoing objective measurement, where all staff teams reflect upon what we are achieving and its purpose. In this way, health benefits and positive outcomes become an integral part of practice.

After an extensive consultation period, where we drew on expertise both from within Elysium and from our network of experts outside the organisation, we now have an agreed set of outcomes measurements across our services. Undoubtedly one of the most important benefits of this development will be the ability to effectively capture the individual’s perspective on their outcomes and their experience of care. This data is essential to shaping and supporting the delivery of a quality service. Used along-side other recommended resources and frameworks it means that we can provide healthcare where every expert who works as part of Elysium’s team, will always put the individual’s requirements first and ensure that they have the most appropriate care available for their care needs.”

Huntington’s Disease and Therapy Outcome Measures (TOMs)


For our neuroprogressive pathway, which supports people living with conditions such as Huntington’s disease, we have chosen Therapy Outcome Measures (TOMs) because it takes a holistic view of outcomes. The TOMs scale addresses four dimensions of an individual in line with the International Classification of Functioning, Disability and Health (WHO, 2007) – impairment, activity, participation and wellbeing.

Each of these dimensions are rated by the therapist (or clinician) in consultation with the individual where possible, and/or their family. The ratings are on a simple 11-point scale that measures each dimension in terms of severity of the presenting condition and the impact on the individual. The scale allows therapists to monitor changes over time, and then the aggregation of the data enables internal and external benchmarking.



Joanna McCabe, HD Specialist Nurse for Elysium Neurological welcomed the new standardised use of outcome measures, in particular the inclusion of measuring wellbeing and quality of life for people with HD.

She said: “Measuring outcomes for people with HD is hugely important so that we know we are providing the very best possible care, personalised to individual needs. It also helps improve collaboration between therapists and care staff because we know we have a shared framework that we are all working within.

We chose TOMs for HD because lot of other outcome measures would only show a decline for progressive neurological conditions but TOMs also looks at quality of life measures too which are so important in progressive conditions.

TOMs were initially developed by speech and language therapists so they are really transferrable and they are easy for anyone to use. They only take a few minutes to complete but the data they collect across the four domains of impairment, activity, participation and wellbeing, provide a really comprehensive overview of the patient. Plus we can monitor changes over time so we know how someone is responding to a therapy or an intervention.”


Outcome measurement in practice


TOMs was developed by Enderby (1992)* as a really practical method for SLTs to measure outcomes in routine clinical practice and has also been adopted by other therapists working in certain fields. Candida Ellis is an SLT from Badby Park, a specialist neurological care home in Daventry which provides rehabilitation, long-term care, respite and palliative care for people with progressive neurological illnesses, acquired brain injuries and spinal injuries. Candida uses TOMs with residents and explains why it is particularly suitable for collaborative working and for providing HD care.

Candida says: “When everyone involved in a person’s care uses the same outcome measurement scale it is like we’re speaking the same language and we’re all working towards a shared goal. We all feed into the measurements and we’re aligned in our thinking – working collaboratively like this has huge benefits for the patient or resident.

As an SLT, I’m particularly interested in how measurement scales prioritise communication and ensure that the person’s wishes and their experience of care is captured and recorded. TOMs does this well and so we’re able to evaluate whether therapies or interventions are having the desired effect. It also enables us to benchmark our data and we can quickly see if an intervention is not performing as it should. This means we can then find an alternative solution together as a team because we all have access to the data.”


Outcome measurement is also a core component of delivering effective and high-quality services. They can be used to demonstrate the impact of models of working that effect more than one person and can highlight areas of a service that might benefit from extra resources or periodic evaluations. Theresa Fitzpatrick is Service Lead at Badby Park and oversees the Meadows Unit that provides specialised care for people with HD. According to Theresa, outcome measurement is a valuable tool for delivering evidence-based and person-centred services.

She explains: “Here on Meadows, we provide person-centred care for each of our residents and that means our team know what individual requirements each person has and the particular way that they need support. We’re quite unique in that sense because we are all very involved in the care and we’ve worked with some of our residents for a long time so we have good relationships with them.

However, outcome measurements are still a hugely valuable support because our work then becomes evidence-based and we can clearly see through the data, the impact of therapies or interventions. It helps build a framework or system for person-centred care and if new therapists or clinicians join our team then it’s easy for them to see our way of working and the benefit that it brings to our residents.

As a progressive condition, the care needs of residents living with HD are constantly changing. Measuring outcomes allows us to benchmark data so that we can spot trends or patterns and be prepared for any modifications or interventions that may be needed. If we can plan ahead of time, we can make sure we are ready as a service to support changing needs and this reduces stress and agitation in the resident. This improves the care experience of both the person with HD and their family.”


Sharing data

Elysium Neurological is committed to sharing best practice, new knowledge and data wherever possible to improve the standard of complex care at an national and international level. As soon as we have gathered sufficient data from our new outcome measures to inform our practice, we will share our learnings with the wider specialist clinical community. Joanna McCabe, Elysium Neurological’s HD Specialist Nurse supports this commitment to transparency and our drive for continuous improvement and reflection to benefit everyone within the HD community.


She says: “Although we are still in the trial phase for TOMs we are looking forward to discussing our work more widely when possible. The more organisations like ourselves, share our findings and what we’ve learnt, the better the experience of care will be for people living with HD and their families.

Ensuring that all staff know how to measure outcomes, and why we are doing it, is also an important part of this project. Everyone involved in the care of someone living with HD will be working with TOMS at some level – measuring outcomes is a real team effort. So that’s why sharing knowledge of HD and experience of how to provide care for people is so important. The more informed we are about our work, the more accurate we can be in our measurements and this will be reflected in the outcomes.

If we can share a successful holistic approach with the rest of the HD community and everyone involved in HD care, this will help foster the adoption of best practice and improve the experience for the person with HD. And that’s what this is all about – ensuring that the individual’s wishes are prioritised within all care decisions so that we can maintain as positive a quality of life as possible for a person with HD.”

Working together as part of the HD community


We are always open to working in partnership with other organisations in the Huntington’s disease and rare disease community, so if you’re a member of an organisation where you feel collaboration would be possible then please do get in touch.




Make An Enquiry

If you’d like to make a referral then please get in touch with us here.

You can also visit each service’s profile page to find out more about what our EveryExpert approach to care looks like in practice:

The Bridge, Middlesbrough
Adderley Green, Staffordshire
Badby Park, Northamptonshire
Stanley House, Herefordshire
St Neots, Cambridgeshire
The Avalon Centre, Wiltshire


* Enderby P. Outcome measures in speech therapy: impairment, disability, handicap, and distress. Health Trends 1992; 20: 61–64.