Study proves reliability of remote ECAS screening tool for MND/ALS

The COVID-19 pandemic sped up the need to adopt new ways of carrying out clinical and research assessments for people living with MND. Some people living with MND experience difficulty attending clinical and research appointments due to travel and mobility issues.   

An important part of the clinical care of people with ALS/MND is an assessment of how they think and process information, and how they behave. This is known as cognition and behaviour.  

A well-established screening tool for detecting difficulties in a person’s thinking and behaviour in ALS/MND is the Edinburgh Cognitive and Behavioural ALS Screen (ECAS:5), which was developed by Euan MacDonald Centre member Prof Sharon Abrahams and colleagues. However, up until now the ECAS assessment has only been validated for face-to-face administration. 

While in-person assessments are always a first choice, being able to carry out assessment remotely has its advantages. These include helping to reduce or remove the need for people to travel which may mean they are less tired during the assessment. Remote assessment is less costly, and often reduces people’s anxiety when planning to attend an in-person appointment 

The aim of this study was to develop and validate a method of performing an ECAS assessment remotely and reliably.  

Researchers developed documents and materials that would be suitable to use to carry out the ECAS assessment using person to person video calls. Ethical approval was obtained, and all participants gave their informed consent. 

The researchers made sure, as far as possible, that the remote assessment was as similar to the in-person version normally used in a clinic based out-patient appointment. For tasks such as verbal fluency (the ease with which a person can produce words), participants could respond by either speaking, writing, or by typing using the ‘chat’ features on the video call platform. 

Twenty-four people living with ALS/MND were recruited through the CARE-MND platform which is a Scotland-wide register for people with MND. They were compared with a control group of people with no history of ALS/MND. 

Clinicians, researchers, and study participants were asked to give their feedback. For the participants living with MND the majority (88.2%) agreed that the remote ECAS assessment was straightforward and that the instructions were clear and understandable (88.3%). They all agreed that doing the ECAS remotely was convenient for them and saved them time.  

The clinician and researcher group agreed (100%) that the administration of the remote ECAS assessment was straightforward and that the guidelines were clear and understandable. Over three quarters of the clinician and researcher group (84.2%) agreed that administering the ECAS assessment remotely is an appropriate way of assessing cognition and 89.5% felt satisfied with administering the assessment in this way. 

Although not without its own limitations, the researchers have provided evidence of the reliability and validity of the remote version of the ECAS assessment. People living with ALS, clinicians and researchers view it as a good alternative to face-to-face administration. The method may be useful for clinical use and research, in addition to clinical trials. 

The work was funded by the Scottish Government via the SPRINT-MND/MS PhD programme. The work was published in the scientific journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 

Related links 

Read the scientific article (freely available): Gray et al (2023) Development, reliability, validity, and acceptability of the remote administration of the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2023.2278512 . 

Prof Sharon Abrahams’ profile 

Debbie Gray's profile (external University of Edinburgh website)

ECAS webpages (external University of Edinburgh website)