Psychological distress and coping styles of caregivers of patients with amyotrophic lateral sclerosis: a longitudinal study

Figures & data

Table 1 Baseline characteristics.

Caregivers (N = 54)
Age, years mean (SD)	58.7 (10.9)
Female, n (%)	38 (70.4)
Relationship status^a
Living together, n (%)	50 (94.3)
Living seperately, n (%)	3 (5.7)
Highest level of education^b
High school, n (%)	10 (19.2)
Vocational training, n (%)	19 (36.6)
College or university degree, n (%)	23 (44.2)
HADS total score, mean (SD)	10.8 (7.2)
Caregivers psychologically distressed, n (%)^c	23 (42.6)
CISS: task-oriented coping style, mean (SD)	24.3 (5.3)
CISS: emotion-oriented coping style, mean (SD)	15.2 (5.0)
CISS: avoidance-oriented coping style, mean (SD)	18.7 (5.6)
Patients (N = 54)
Age, years mean (SD)	60.2 (9.7)
Female, n (%)	15 (27.8)
Time since diagnosis, months median (Q1–Q3)	3.3 (2.2–5.1)
ALSFRS-R, mean (SD)	42.5 (3.8)
HADS total score, mean (SD)	7.7 (4.6)

N: number of caregivers or patients; SD: standard deviation; HADS: Hospital Anxiety and Depression Scale; CISS: Coping Inventory for Stressful Situations; Q1: first quartile; Q3: third quartile; ALSFRS-R: Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised. ^aOne caregiver did not answer the question.

^bTwo caregivers did not answer the question. ^cIdentified by HADS total score ≥ 12.

Table 2 Caregivers’ psychological distress over time (N = 54).

	b (95% CI)	SE b	p-Value
Intercept	10.61 (8.69–12.54)	0.96	<0.001
Change per month	0.24 (0.06–0.43)	0.09	0.012

Random effects: random intercept and random slope. Covariance structure: Autoregressive structure (1) Heterogeneous.

N: number of caregivers; CI: confidence interval; SE: standard error.

Table 3 Coping styles of caregivers over time (N = 54).

	b (95% CI)	SE b	p-Value
Emotion-oriented coping
Intercept	15.38 (14.09 to 16.67)	0.64	<0.001
Change per month	−0.10 (−0.22 to 0.02)	0.06	0.110
Task-oriented coping
Intercept	24.11 (22.74 to −25.50)	0.69	<0.001
Change per month	−0.25 (−0.41 to −0.09)	0.07	0.003
Avoidance-oriented coping
Intercept	18.59 (17.08 to 20.09)	0.75	<0.001
Change per month	−0.06 (−0.18 to 0.06)	0.06	0.314

Random effects: random intercept and random slope. Covariance structure: Autoregressive structure (1) Heterogeneous.

N: number of caregivers; CI: confidence interval; SE: standard error.

Table 4 Coping styles associated with caregivers’ psychological distress over time (N = 54).

	b (95% CI)	SE b	p-Value
Model 1^a
Intercept	10.75(9.20 to 12.30)	0.77	<0.001
Change per month	0.22 (0.30 to 0.41)	0.10	0.026
Change per point on emotion-oriented coping	0.90 (0.64 to 1.17)	0.13	<0.001
Model 2^a
Intercept	10.75 (8.84 to 12.65)	0.95	<0.001
Change per month	0.24 (0.06 to 0.43)	0.34	0.012
Change per point on task-oriented coping	−0.21 (−0.56 to 0.14)	0.17	0.237
Model 3^a
Intercept	10.63 (8.71 to 12.55)	0.96	<0.001
Change per month	0.24 (0.06 to 0.43)	0.34	0.012
Change per point on avoidance-oriented coping	−0.08 (−0.42 to 0.25)	0.17	0.631

Random effects: random intercept and random slope. Covariance structure: Autoregressive structure (1) Heterogeneous.

N: number of caregivers; CI: confidence interval; SE: standard error.

^a The interaction between time and coping style was not significant and did not improve the fit of the model