|
CONTROL GROUP
|
|
People with ALS (N = 14)
|
| |
Time 1 (baseline)
|
Time 2 (after six months)
|
|
Assessment
|
N
|
Mean
|
St Dev
|
Range
|
N
|
Mean
|
St Dev
|
Range
|
|
ALSFRS-R
|
13
|
34.2
|
6.6
|
23–44
|
8
|
26.1
|
8.5
|
12–37
|
|
ECAS
|
12
|
104.1
|
12.6
|
82–120
|
5
|
114.4
|
7.5
|
108–127
|
|
GAD-7
|
13
|
3.3
|
5.1
|
0–15
|
8
|
2.3
|
4.1
|
0–11
|
|
MQOL-R
|
13
|
6.2
|
0.7
|
5.2–7.8
|
8
|
5.8
|
0.6
|
4.6–6.6
|
|
PHQ-9
|
13
|
6.5
|
3.9
|
0–12
|
8
|
5.4
|
4.3
|
1–15
|
|
Care Partners (N = 14)
|
| |
Time 1 (baseline)
|
Time 2 (after six months)
|
|
Assessment
|
N
|
Mean
|
St Dev
|
Range
|
N
|
Mean
|
St Dev
|
Range
|
|
Adapted SSLI
|
13
|
14.7
|
3.8
|
10–23
|
9
|
15.3
|
2.4
|
12–19
|
|
ECAS – Section B
|
13
|
1.4
|
1.5
|
0–5
|
9
|
1.1
|
1.5
|
0–4
|
|
GAD-7
|
12
|
6.6
|
5.3
|
0–18
|
10
|
6.5
|
4.4
|
1–15
|
|
PHQ-9
|
13
|
6.8
|
6.0
|
0–19
|
10
|
7.6
|
6.1
|
1–19
|
|
QOLLTI-F v2
|
13
|
5.6
|
1.1
|
3.9–7.6
|
10
|
6.0
|
0.5
|
4.7–6.6
|
|
Relationship Closeness Scale
|
13
|
16.0
|
2.2
|
13–19
|
10
|
16.5
|
1.8
|
13–19
|
|
ZBI
|
13
|
34.6
|
16.3
|
9–56
|
10
|
33.4
|
14.0
|
7–51
|
|
RESPITE CARE GROUP
|
|
People with ALS (N = 17)
|
| |
Time 1 (baseline)
|
Time 2 (after six months)
|
|
Assessment
|
N
|
Mean
|
St Dev
|
Range
|
N
|
Mean
|
St Dev
|
Range
|
|
ALSFRS-R
|
17
|
29.5
|
6.9
|
8–37
|
12
|
26.0
|
9.5
|
11–41
|
|
ECAS
|
16
|
99.2
|
16.4
|
61–121
|
8
|
104.6
|
12.2
|
79–118
|
|
GAD-7
|
17
|
5.1
|
5.8
|
0–19
|
12
|
3.3
|
2.9
|
0–9
|
|
MQOL-R
|
17
|
6.4
|
1.3
|
4.5–9.1
|
12
|
6.5
|
0.8
|
5.2–7.7
|
|
PHQ-9
|
17
|
6.5
|
6.4
|
0–20
|
12
|
5.3
|
4.1
|
0–14
|
|
Care Partners (N = 17)
|
|
Assessment
|
Time 1 (baseline)
|
Time 2 (after 6 months)
|
| |
N
|
Mean
|
St Dev
|
Range
|
N
|
Mean
|
St Dev
|
Range
|
|
Adapted SSLI
|
17
|
14.5
|
4.1
|
9–24
|
16
|
15.5
|
5.2
|
6–24
|
|
ECAS – Section B
|
17
|
1.2
|
1.1
|
0–4
|
16
|
1.1
|
1.0
|
0–3
|
|
GAD-7
|
17
|
8.7
|
5.7
|
0–21
|
16
|
6.6
|
4.2
|
0–15
|
|
PHQ-9
|
17
|
10.2
|
5.9
|
11–24
|
16
|
8.9
|
5.8
|
2–21
|
|
QOLLTI-F v2
|
17
|
5.8
|
0.8
|
4.5–7.0
|
15
|
5.8
|
0.7
|
4.6–5.8
|
|
Relationship Closeness Scale
|
17
|
16.4
|
2.0
|
13–20
|
16
|
17.1
|
2.1
|
14–20
|
|
ZBI
|
17
|
41.5
|
13.4
|
23–70
|
16
|
38.6
|
12.3
|
24–60
|
- ALSFRS-R Revised Amyotrophic Lateral Sclerosis Functional Rating Scale, ECAS Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis Screen, GAD-7 Generalized Anxiety Disorder 7-Item, MQOL-R McGill Quality of Life Questionnaire-Revised, PHQ-9 Patient Health Questionnaire-9, QOLLTI-F v2 Quality of Life in Life-Threatening Illness-Family Carer Version 2, SSLI Social Support List of Interactions, ZBI Zarit Burden Interview
