National audit of cognitive assessment in people with pwMND A national audit of cognitive assessment in people with motor neurone disease (pwMND) in Scotland

Abstract

Cognitive and behavioral abnormalities are recognized as an integral part of Motor Neurone Disease (MND) and occur at all stages of the disease. The early detection of cognitive and behavioral symptoms in MND is critical. Such symptoms are only reported when we explicitly ask, evaluate, document, and assess. In the National Institute for Health and Care Excellence (NICE) MND guideline (2016), formal cognitive and behavioral assessment is incorporated in MND management and is fundamental to providing appropriate care to pwMND. Cognition is explicitly stated in 14 separate recommendations in the guidelines. The NICE guidelines therefore constitute pre-defined standards which we audited. This audit highlights that health professionals increasingly recognize the significance of cognitive screening in MND and follow more structured approaches in implementing this compared to previous years.

Keywords:

• Motor neurone disease
• cognition
• cognitive assessment

Acknowledgements

We thank the 17 clinical specialist nurses who are on the frontline and their role in the audit process was pivotal. We also acknowledge the valuable work of clinical psychologists.

Declaration of interest

Abrahams S. is the author of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS). The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Data sharing statement

Requested for access to data should be addressed to the corresponding author and the CARE-MND Consortium.

Additional information

Funding

Maria Stavrou is a PhD Clinical Research Fellow and is funded by the Medical Research Council on “Investigating the molecular mechanisms of mutant C9orf72 human iPSC-derived astrocyte-mediated motor neuron deficits”. She also acknowledges support from the Rowling Scholars scheme, administered by the Anne Rowling Regenerative Neurology Clinic, University of Edinburgh, Edinburgh, UK