The clinical impact of the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) and neuropsychological intervention in routine ALS care

Abstract

Objectives. The Edinburgh Cognitive and Behavioral ALS Screen (ECAS) is a brief multi-domain assessment designed for people with Amyotrophic Lateral Sclerosis (ALS). This study evaluated the clinical impact of using the ECAS on ALS patients, carers and healthcare professionals. A secondary aim was to evaluate the clinical impact of neuropsychological intervention. Methods. A survey of current screening practices in ALS services across the UK was undertaken. In addition comparative case studies, in seven ALS care contexts, was qualitatively explored through interviews with patients, carers and healthcare professionals. Results. 22/34 health care services responded to the survey. 95% screen patients for cognitive and behavioral changes and all used the ECAS. Thematic analysis indicated that the ECAS: raises awareness about cognitive and behavioral change between patients, carers and healthcare professionals; validates and/or reassures; identifies changes, aids understanding of the patients’ presentation and informs clinical decision-making. The latter includes suitability of interventions, adaptations by the multidisciplinary team, discussions about end-of-life care, referral on to other services, and identifying carers’ support needs. A number of indirect economic benefits were described. Clinical neuropsychological intervention was reported to help the multidisciplinary team manage the care particularly of complex cases, the effects on daily life, and stress of patients, carers and families. Conclusions. The ECAS has been widely implemented across ALS health care teams in the UK. Screening for cognitive/behavioral deficits and neuropsychological intervention has a positive impact on patients, carers and healthcare professionals and improves the quality of routine clinical care.

Keywords:

• cognition
• neuropsychology: assessment
• screening

Acknowledgements

The authors gratefully thank the patients, carers and healthcare professionals who participated.

Declaration of interest

One of the authors (SA) was involved in the development of the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) referenced in this article.

Data availability statement

The data that support the findings of this study are available from the corresponding author [SA], upon request.

Additional information

Funding

This study was supported by a grant from the Motor Neurone Disease Association of England, Wales and Northern Ireland.