Results published of audit of MND cognitive assessments.

Illustration of a human head with cogs inside

April 2020: The findings of a study have been published this week auditing cognitive assessments in people with MND in Scotland. 

Led by Dr Maria Stavrou at the University of Edinburgh (MRC clinical research fellow and Rowling Scholar), the study by members of the Euan MacDonald Centre, found that the importance of assessing changes in the thinking processes (cognition) and behaviour of people with MND is becoming more significant amongst health professionals in Scotland. Researchers also suggested a number of activities to prompt further improvement and found, consistent with existing research studies, that 56% of people with MND in Scotland experienced cognitive impairment.

Many people with motor neurone disease experience changes and difficulties in their thinking (cognition) and behaviour as symptoms of their illness. The early detection of these symptoms in MND is critical as they increase demands on caregivers, reduce survival, and impact care planning.

The National Institute for Health and Care Excellence (NICE) recognises the importance of this. Under their MND guidelines cognitive and behavioural assessment is deemed as fundamental to providing appropriate care to people with MND.

Using data held on the CARE-MND platform, and measuring this against the NICE guidelines, researchers audited cognitive and behavioural assessments in Scotland to see whether best practice is being followed. More specifically they considered whether

  • cognitive screening is occurring for people with MND after diagnosis
  • care planning is being adapted for people with cognitive impairment and behaviour change.

Two time periods were audited:

  1. January 2015 – December 2016
  2. January 2017 – December 2017.

The Results

The audit highlighted that health professionals increasingly recognise the significance of cognitive screening in MND and follow more structured approaches compared to previous years. Cognitive testing increased by 21% between the two time periods and the Edinburgh Cognitive and behavioral ALS screen (ECAS) was the most commonly performed assessment.

Of those assessed, 56% were cognitively impaired which is consistent with previous population studies of cognitive impairment amongst people with MND.

The audit also found that there was a small trend toward fewer interventions such as non-invasive ventilation (NIV) and gastrostomy in cognitively impaired patients and previous research studies have also suggested this.  This may be explained by the fact that people with cognitive change or frontal temporal dementia may have difficulty coping with NIV compliance.

Larger studies would be needed to confirm these links and researchers also highlighted more data being needed regarding people with MND and cognitive change and

  • NIV compliance,
  • the role of people with MND, their carers and clinicians in decision-making processes,
  • end-of-life practices.

To improve the care or people with MND in Scotland, the researchers also suggested

  • Masterclasses/training days to enhance health care professionals’ knowledge in ECAS;
  • Establishing dedicated ECAS clinics or incorporating psychologists into clinic visits
  • Ongoing support and access to neuropsychology services as neuropsychological intervention helps the care teams manage the particularly complex cases.

CARE-MND contributed to providing accurate and effective data capturing for this study. The platform, including the national register of people with MND for Scotland, is a resource containing the details of 99% of people with MND in Scotland. In their paper, the researchers also acknowledged the 17 MND clinical specialist nurses in Scotland, whose role in the audit process was pivotal, and the valuable work of clinical psychologists.

Maria Stavrou is a member of the Euan MacDonald Centre, PhD Clinical Research Fellow funded by the Medical Research Council and is supported by the Rowling Scholars scheme at the Anne Rowling Regenerative Neurology Clinic.

The full paper has been published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Journal. 

Related Links

Full paper in ALS-FTD journal


Anne Rowling Regenerative Neurology Clinic


Illustration Credit: Jack Moreh

This article was published on: Wednesday, April 22, 2020