Measuring the quality of services in brain injury rehabilitation
By Dr Caroline Knight, Lead Consultant Neuropsychologist and Dr Caroline Malone, Consultant Neuropsychologist, Priory Brain Injury Services
The United Kingdom Acquired Brain Injury Forum (UKABIF) estimates that there are over one million people in the UK currently living with the effects of acquired brain injury (ABI) at an estimated cost of £4.1 billion. There may be physical, behavioural, cognitive, and emotional consequences of ABI. The person's level of independence, employment status, their relationships and quality of life can be impacted. No two brain injuries are said to be alike.
There is positive evidence for the effectiveness of brain injury rehabilitation and the costs of this are outweighed by savings in societal, care and health costs (UKABIF Manifesto, 2012). However, the diverse nature of ABI means that treatment cannot be delivered in a 'blanket approach'. Rather, treatment needs to be carefully tailored to meet the needs of the individual, at an appropriate pace, in order to maximise their rehabilitation potential.
There is a strong culture of evaluating rehabilitation in ABI services through the use of reliable and valid outcome measures. A basket of measures is required to capture the wide range of possible outcomes. This evidence-based approach is of benefit to:
- The person with ABI who may sometimes lack insight into their symptoms
- The person’s family, as ABI frequently impacts those supporting the person
- The rehabilitation team who can track the person’s progress and adjust their care plans according to individual needs
- The funders to assure the efficiency and value for money of treatment programmes
Priory Brain Injury Services have services that specialise in neurobehavioural and neurophysical rehabilitation.
Neurobehavioural disability is a common consequence of ABI and includes complex, often subtle and long lasting cognitive and behavioural changes. These changes can include difficulties with memory, attention, insight, executive function, social judgement, mood, impulsivity and personality. Symptoms can be worsened by environmental factors.
Neurobehavioural rehabilitation has been shown to be successful in helping people following ABI to cope with, and reduce levels of, challenging behaviour. Structures are created that minimise the effects of cognitive difficulties and provide opportunities for new learning. These structures include the physical environment, a transdisciplinary team, therapeutic routine, positive behavioural support planning and regular feedback. With reduced challenging behaviour, individuals are able to access more traditional neurorehabilitation to aid functional and social skills and reintegrate into the community.
From admission into services, measures are routinely collected to aid the formulation of goals and care plans. These include questionnaires such as the St Andrew's Swansea Neurobehavioural Outcome Scale (SASNOS) and Functional Independence Measure / Functional Assessment Measure (FIM-FAM). In addition, direct observational tools such as the Overt Aggression Scale – Modified for Neurorehabilitation (OAS-MNR) are also completed.
Aggression is often a core feature of referrals to specialist services and a significant barrier to people accessing more traditional neurorehabilitation services. Recently published findings in The Neuropsychologist from some of our brain injury rehabilitation sites, showed a 76% reduction in the rate of aggression from admission for those still in the services at the time of the study and a 90% reduction at discharge. These findings are encouraging in terms of benchmarking, with leading competitors reporting a 53% reduction.
There were also improvements in all other outcome measures employed in these services, suggesting greater independence was achieved with the reduction in the symptoms of neurobehavioural disability. This work was awarded the annual 'RAID Awards for Excellence in Working with Challenging Behaviour' by the Association of Psychological Therapies (www.apt.ac/raid-awards.html)*.
Neurophysical services aim to support individuals with physical disabilities to maximise their potential following an ABI, through an integrated care pathway approach. Severe brain injury can lead to disorders of consciousness. Namely, individuals may progress from a coma to a vegetative or minimally conscious state before emerging to full awareness. It is only when levels of consciousness improve that neurocognitive and neurobehavioural difficulties may also become apparent.
Sadly some individuals never emerge from a vegetative or minimally conscious state and require long-term support by a skilled care team. People in prolonged disorders of consciousness (PDOC) often have very complex physical health needs, for example the management of ventilators and tracheostomies, spasticity management and postural management. Paroxysmal sympathetic hyperactivity (PSH) is another common syndrome following severe brain injury which requires skilled medical management as its effects can result in longer hospital stays and more complications. The Royal College of Physicians’ national clinical guidelines for PDOC advise on a consistent approach to the diagnosis and management of individuals.
Within neurophysical services UK Rehabilitation Outcomes Collaborate (UK-ROC) data is collected including FIM-FAM, Northwick Park Dependency Scales, Rehabilitation Complexity Scale and the Patient Categorisation Tool. However alongside these required measures, individualised Goal Attainment Scaling (GAS) goals and SMART goals are also set to monitor progress through rehabilitation programmes.
Individual measures may also be used to monitor mood or behaviour where needed. In 2016, in the British Medical Journal (BMJ), Turner-Stokes et al evaluated five years of UK-ROC data over multiple sites throughout the UK and concluded that specialist rehabilitation can be highly cost-effective for all neurological conditions, especially in high-dependency patients.
Outcome data is key in evaluating care
Services for people with brain injury employ a data driven approach to routinely track progress in rehabilitation. Not only does this allow services to effectively plan and target rehabilitation to meet the needs of the individual but also allows services to assure key stakeholders that they deliver the quality that they promise.
A data driven approach lends itself well to innovation and evaluating rehabilitation outcomes will place brain injury services at the forefront of understanding the impact on individuals and society, as technology in care and treatment advances.
For further information on Priory services offered to the NHS, including rehabilitation-focused treatment programmes for those living with a brain injury, please call our dedicated 24/7 customer service centre on 0800 090 1356. Alternatively, click here to submit an enquiry form