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

Figures & data

Table 1. Participant characteristics of participants with and without ALS.

Sub-study A	People without ALS (N = 27)
Age (mean, SD, range)	35.2, 15.1, 20-64 years
Men/women	8/19
Completed further/higher education	88.9%
Number of days between testing sessions (mean, SD, range)	15.7, 11.1, 2-33 days
	Remote	In-Person
ECAS ALS-specific score (mean, SD)	85.9 (6.7)	84.0 (7.3)
ECAS ALS nonspecific score (mean, SD)	30.3 (2.8)	30.4 (3.5)
ECAS total score (mean, SD)	116.2 (8.5)	114.4 (9.2)
Sub-study B	pwALS (N = 24)
Age (mean, SD, range)	62.4, 12.6), 31-85 years
Men/women	20/4
Any further/higher education	79.2%
Site onset N (%) - UL/LL/B/R/M/U	7 (29.2) / 8 (33.3) / 1 (4.2) / 2 (8.3) / 2 (8.3) / 4 (16.7) (29.2/33.3/4.2/8.3/8.3/16.7)
ALS Functioning Rating Scale-Revised score (ALSFRS-R; mean, SD)	34.5 (7.2)
Ci/Bi/Cbi/FTD	2/7/1/1
Remote ECAS ALS-specific score (mean, SD)	86.0 (10.6)
Remote ECAS ALS nonspecific score (mean, SD)	28.6 (5.1)
Remote ECAS total score (mean, SD)	114.5 (13.8)

Note: UL = upper limb; LL = lower limb; B = bulbar; R = respiratory; M = mixed; U = unknown, Ci = cognitive impairment, Bi = behavioral impairment, Cbi = cognitive and behavioral impairment, FTD = frontotemporal dementia. Total ECAS scores range from 0-135, with 105 being the cutoff for impairment. Ci was defined by a deficit on ECAS ALS-specific score and/or ECAS total score. Bi was defined as the identification of apathy with or without other behavioral change, or the presence of two or more behavioral symptoms on the behavioral interview of the ECAS. Cbi included participants who met the criteria for both Ci and Cbi. For FTD, this diagnosis came from the CARE-MND platform and was confirmed using the ECAS.

Figure 1. ECAS total scores (remote and in-person) for the group of people without ALS. X indicates the mean total scores (116.2 for remote and 114.4 for in-person). Standard errors were 1.6 and 1.8 respectively. Whiskers indicate range and the dot is an outlier.

Figure 2. Bland-Altman plot. The x-axis of the plot represents the average of the two measurements, while the y-axis represents the difference between the two measurements. The dark horizontal line is drawn at the mean difference (1.74) to indicate the bias between the two methods. The grey lines are the upper and lower limits of agreement which represent the range within which 95% of the differences between the two methods of measurement are expected to fall.

Figure 3. Feedback from clinicians and researchers on their experiences of administering the ECAS remotely.

Figure 4. Feedback regarding the remote administration of the ECAS from pwALS.