Pathways for MND
Submitted by Robert David St... on Fri, 31/03/2017 - 17:15
Developing Pathways in the UK for the assessment of cognitive and behaviour change in people with MND
Cognitive and behavioural changes occur in approximately 50% of patients with Motor Neurone Disease (MND) which can manifest as deficits in executive and language functions and poor social cognition. Up to 15% also suffer from a frontotemporal dementia (see for review (Goldstein and Abrahams 2013). These deficits can impact caregiver burden, adherence to life-prolonging interventions and care planning.
NICE Guidelines on the Management of MND
The new NICE guidelines on MND (NICE 2016) state that
1.3 “At diagnosis and if there is a concern about cognition and behaviour, explore any cognitive or behaviour changes with the person and their family members and/or carers as appropriate. If needed refer the person for a formal assessment”.
The guidelines continue to state 1.3.2“The multidisciplinary team should assess, manage and review the following areas… Cognition and Behaviour”
And most importantly: 1.5.5“The multidisciplinary team should have established relationships with, and prompt access to the following: Clinical psychology and neuropsychology”
Edinburgh Cognitive and Behavioural ALS Screen
People with MND have a range of physical disabilities which can make it difficult for them to undergo standard clinical neuropsychological assessment. In response to this Professor Sharon Abrahams and Thomas Bak from the University of Edinburgh have developed the Edinburgh Cognitive and Behavioural ALS screen (ECAS), a multi-domain brief assessment, which is designed for people with motor dysfunction and has been validated against extensive neuropsychological assessment (Abrahams, Newton et al. 2014, Niven 2015). The ECAS provides a brief assessment of executive functions, fluency, language functions, memory and visuospatial functions and can be undertaken in written or spoken form, making it suitable for physical disability. In addition it provides an informant behaviour interview based on the latest diagnostic criteria for behavioural variant FTD.
Within Scotland, routine assessment of MND patients using the ECAS has been implemented through a dual pathway method. The first pathway involves direct referral from the MND team (consultant neurologist) to local clinical neuropsychology services who undertake an ECAS as part of their assessment. Where at all possible these patients are given priority status as long waiting lists are often inappropriate for this rapid neurodegenerative condition. The second pathway (which is applicable for those people with MND who do not or cannot access neuropsychology services) is for a member of the multidisciplinary team (usually the MND nurse specialist) to undertake an ECAS, with supervision on interpretation and possible intervention from local clinical neuropsychology services. As such the clinical neuropsychologist provides regular supervision of MND health specialists and indirect input into the multidisciplinary team with less time committed.
MNDA: Developing Pathways in the UK for assessment of cognitive and behaviour change in people with MND
The Motor Neurone Disease Association (MNDA) are funding a project led by Professor Sharon Abrahams at the University of Edinburgh to develop pathways to a UK national assessment programme for the identification of changes in cognition and behaviour in people living with MND. Part of this process is to encourage the development of local links between MND Teams and local clinical neuropsychological services.
Throughout 2017, across the UK, the MNDA and Professor Abrahams will be delivering Advanced Masterclasses in ‘Using the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) to assess change in Motor Neurone Disease’. This training programme is accredited by the European Network to Cure ALS and is aimed at health professionals working in MND teams.
At these meetings trained health professionals will be encouraged to make contact with their local clinical neuropsychology services to develop local care pathways.
Abrahams, S., J. Newton, E. Niven, J. Foley and T. H. Bak (2014). "Screening for cognition and behaviour changes in ALS." Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15(1-2): 9-14.
Goldstein, L. H. and S. Abrahams (2013). "Changes in cognition and behaviour in amyotrophic lateral sclerosis: Nature of impairment and implications for assessment." The Lancet Neurology 12(4): 368-380.
NICE (2016). "National Institute for Health and Care Excellence."
Niven, E., Newton, J., Foley, J., Colville, S., Swingler, R., Chandran, S., Bak, T.H. & Abrahams S. (2015). "Validation of the Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis SCreen (ECAS): A cognitive tool for motor disorders." Amyotroph Lateral Scler Frontotemporal Degener 16(3-4): 172-179.