Psychological distress in partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: what’s the role of care demands and perceived control?

Figures & data

Table 1. Caregiver and patient characteristics.

Caregiver characteristics (n = 148)
Gender, n (%)
Female	96 (64.9)
Male	52 (35.1)
Age in years, mean (SD)	61.55 (10.17)
Education level, n (%)
Low	63 (42.6)
Medium	35 (23.6)
High	50 (33.8)
Baseline parameters, mean (SD)
HADS [score range 0–42]	11.11 (7.14)
Perceived control over caregiving [score range 0–9]	6.34 (1.87)
Patient characteristics (n = 148)
Gender, n (%)
Female	53 (35.8)
Male	95 (64.2)
Age in years, mean (SD)	62.59 (9.9)
Diagnosis, n (%)
ALS	106 (71.6)
PMA	42 (28.4)
Time since diagnosis in months, mean (SD), range	37.57 (40.8)
Onset area symptoms, n (%)
Upper limb onset	56 (37.8)
Lower limb onset	55 (37.2)
Bulbar onset	32 (21.6)
Trunk onset	5 (3.4)
Baseline parameters, mean (SD), range
ALSFRS-R [score range 0–48]	31.36 (9.58)
ALS-FTD-Q [score range 0–100]	16.76 (12.88)

Abbreviations: ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised; ALS-FTD-Q, Amyotrophic Lateral Sclerosis-Fronto Temporal Dementia-Questionnaire; HADS, Hospital Anxiety and Depression Scale

Educational level: low = did not complete secondary school-completed low level secondary school; medium = completed medium level secondary school; high = completed upper level secondary school and/or university degree

Table 2. Correlation coefficients of the study variables (n = 148).

Variable	1	2	3
1. Psychological distress (HADS)	-
2. Physical functioning patient (ALSFRS-R)	−0.16
3. Behavioural changes patient (ALS-FTD-Q)	0.60***	−0.16*
4. Perceived control over caregiving (3-item scale)	−0.30***	0.13	−0.28**

Abbreviations: ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised; ALS-FTD-Q, Amyotrophic Lateral Sclerosis-Fronto Temporal Dementia-Questionnaire; HADS, Hospital Anxiety and Depression Scale.

*p < 0.05, **p < 0.01, ***p < 0.001

Table 3. Hierarchical multiple regression analysis to predict caregiver distress (HADS total) using physical function of the patient (ALSFRS-R) and perceived control over caregiving.

Step	Variable	B	SE	β	R^2	ΔR^2
1	Constant	23.18	3.48		.08**
	Age	−.20**	.06	−.28
2	Constant	31.77	3.96		.18***	.10***
	Age	−.19**	.05	−.27
	Physical functioning patient	−0.06	.06	−.08
	Perceived control over caregiving	−1.11**	.29	−.29
3	Constant	32.66	4.08		.18***	.01
	Age	−.20***	.05	−.28
	Physical functioning patient	−.06	.06	−.08
	Perceived control over caregiving	−1.19***	.30	−.31
	Physical functioning patient x Perceived control over caregiving	−.03	.03	−.07

Abbreviations: ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised; HADS, Hospital Anxiety and Depression Scale.

*p < 0.05, **p < 0.01, ***p < 0.001

Table 4. Hierarchical multiple regression analysis to predict caregiver distress (HADS total) using behavioural changes in the patient (ALS-FTD-Q) and perceived control over caregiving.

Step	Variable	B	SE	β	R^2	ΔR^2
1	Constant	23.18	3.48		.08**
	Age	−.20**	.06	−.28
2	Constant	21.38	3.27		.46***	.38***
	Age	−.20	.04	−.28
	Behavioural changes patient	.31***	.04	.56
	Perceived control over caregiving	−.54*	.25	−.14
3	Constant	21.33	3.27		.46***	.00
	Age	−.19***	.04	−.28
	Behavioural changes patient	.31***	.04	.55
	Perceived control over caregiving	−.57*	.25	−.15
	Behavioural changes patient x Perceived control	−.02	.02	−.05

Abbreviations: ALS-FTD-Q, Amyotrophic Lateral Sclerosis-Fronto Temporal Dementia-Questionnaire HADS, Hospital Anxiety and Depression Scale.

*p < 0.05, **p < 0.01, ***p < 0.001

Figure 1. Mediation analysis 1, physical functioning patient, perceived control and distress.

Figure 2. Mediation analysis 2, behavioural changes patient, perceived control and distress.

Availability of data

Data are available from the corresponding author upon reasonable request.