Development, reliability, validity, and acceptability of the remote administration of the Edinburgh Cognitive and Behavioural ALS Screen (ECAS)

Abstract

Background

ALS clinical care and research has changed dramatically since the COVID-19 pandemic, accelerating the need for cognitive assessments to be adapted for remote use.

Objectives

To develop the remote administration method of the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), and determine its reliability and validity. Methods: The validation process consisted of: (1) Two versions of the ECAS (A and B) were administered, one in-person and one remotely via video call in a randomized order to 27 people without ALS; (2) The ECAS was administered remotely to 24 pwALS, with a second rater independently scoring performance; and (3) Acceptability was assessed by gathering feedback from 17 pwALS and 19 clinicians and researchers about their experience of using the ECAS remotely.

Results

In the group without ALS, the remote and in-person ECAS total scores were found to be equivalent, and a Bland-Altman plot showed good agreement between the two administration methods. In pwALS, there was excellent agreement between two raters (ICC = 0.99). Positive feedback was gained from pwALS, researchers and clinicians with regards to ease of process, convenience, time, and the environment.

Conclusions

These findings provide evidence of the reliability and validity of the remote administration of the ECAS for pwALS, with clinicians, researchers and pwALS viewing it as a good alternative to face-to-face administration.

Keywords:

• Amyotrophic lateral sclerosis
• cognition
• Edinburgh Cognitive and Behavioural ALS Screen
• remote assessment
• validation

Acknowledgements

We would like to thank the participants for taking part.

Declaration of interests

Author SA is a co-author of the ECAS and is an Associate Editor with the journal.

Additional information

Funding

The study was funded by the Scottish PhD Research & Innovation Traineeships in MND/MS (SPRINT-MND/MS). The MND Association funded the initial development of the ECAS.