Objectives: The Edinburgh Cognitive and Behavioural 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 behavioural changes and all used the ECAS. Thematic analysis indicated that the ECAS: raises awareness about cognitive and behavioural 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/behavioural deficits and neuropsychological intervention has a positive impact on patients, carers and healthcare professionals and improves the quality of routine clinical care.
|Journal||Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration|
|Early online date||15 Oct 2019|
|Publication status||E-pub ahead of print - 15 Oct 2019|