The quality of life and depression in primary caregivers of patients with amyotrophic lateral sclerosis is affected by patient-related and culture-specific conditions

Figures & data

Table 1 Demographic characteristics of caregivers of patients with amyotrophic lateral sclerosis.

Caregivers	All n = 164	German n = 84	Polish n = 80	Statistics between countries
Gender F:M (%)	67.7: 32.3	60.7: 39.3	75: 25	p = 0.05
Age (years); mean ± SD	52.40 ± 14.59	53.39 ± 14.43	51.36 ± 14.70	p = 0.38
Education (years); mean ± SD	14.40 ± 2.78	14.45 ± 2.97	14.36 ± 2.58	p = 0.85
Caregivers’s relationship (%)				p = 0.54
Spouse/partner	65.9	70.2	61.3
Children	22.0	19.0	25.0
Parents	3.7	2.4	5.0
Siblings	3.7	4.8	2.5
Others	4.9	3.6	6.3
≥50% of time for functional care	18.1%	5.0%	31.3%	p = 0.0001*
≥50% of time for emotional help	85.6%	96.3%	75.0%	p = 0.0001
Sleep disorders	22.6%	23.8%	21.3%	p = 0.7

*Statistically significant correlations in bold.

Table 2 Demographic characteristics of patients with amyotrophic lateral sclerosis.

Patients	All n = 164	Germany n = 84	Polish n = 80	Statistical difference between countries
Gender F:M (%)	41.46 : 58.54	41.66 : 58.34	41.25 : 58.75	p = 0.95
Age (years); mean ± SD	59.26 ± 12.58	59.41 ± 13.45	59.11 ± 11.59	p = 0.88
Education (years); mean ± SD	13.68 ± 3,60	13.72 ± 3.74	13.62 ± 3.45	p = 0.86
Disease duration (months); mean ± SD.	29.5 ± 21.6	31.1 ± 26.45	27.8 ± 14.44	p = 0.33
Time from diagnosis (months); mean ± SD.	13.65 ± 12.42	14.4 ± 14.8	12.05 ± 8.53	p = 0.4
ALSFRS-R; mean ± SD	34.07 ± 7.53	33.8 ± 8.5	34.36 ± 6.12	p = 0.65
NIV	12.8%, n = 21	22.6%, n = 19	2.5%, n = 2	p = 0.001*
IV	0.6%, n = 1	1.2%, n = 1	0%, n = 0
PEG	6.7%, n = 11	8.33%, n = 7	5%, n = 4	p = 0.04
ECAS-BS (0–10); mean ± SD, n	0.55 ± 0.99, n = 156	0.48 ± 0.97, n = 83	0.63 ± 1.02, n = 73	p = 0.218
ECAS–BS (0–10); number of patients with behavioral alterations;	n = 50	n = 23	n = 27	p = 0.34
behavioral disinhibition, (0–3), mean ± SD,  n, sum	0.10 ± 0.42, n = 13, sum = 17	0.12 ± 0.42, n = 8, sum = 10	0.10 ± 0.41, n = 5, sum = 7	p = 0.541
apathy/inertia, (0–1), mean ± SD, n, sum	0.24 ± 0.44, n = 36, sum = 37	0.21 ± 0.41, n = 18, sum = 18	0.26 ± 0.47, n = 18, sum = 19	p = 0.632
loss of sympathy empathy, (0–2), mean ± SD,  n, sum	0.10 ± 0.36, n = 12, sum = 15	0.02 ± 0.22, n = 1, sum = 2	0.18 ± 0.45, n = 11, sum = 13	p = 0.001
perseverative/ stereotype, (0–2), mean ± SD,  n, sum	0.05 ± 0.23, n = 6, sum = 7	0.04 ± 0.22, n = 4, sum = 4	0.04 ± 0.26, n = 2, sum = 3	p = 0.519
change in eating behavior, (0–2), mean ± SD,  n, sum	0.07 ± 0.26, n = 11, sum = 11	0.07 ± 0.26, n = 6, sum = 6	0.07 ± 0.25, n = 5, sum = 5	p = 0.930

ALSFRS-R: ALS Functional Rating Scale–revised version; IV: invasive ventilation; NIV: noninvasive ventilation; PEG: percutaneous endoscopic gastrostomy; ECAS-BS: Edinburgh Cognitive and Behavioral ALS Screen Behavioral Score. *Statistically significant correlations are in bold.

Table 3 Correlations between quality of life assessed in two scales: ASCA and QOLLTI-F, and psychological, socio-demographic factors and personal experience of the caregivers of patients with amyotrophic lateral sclerosis.

		ASCA			QOLLTI-F
		All caregivers	Poland	Germany	All caregivers	Poland	Germany
Age	Tau	–0.113	–0.033	–0.209	0.024	0.029	0.037
	p	0.045*	0.683	0.009	0.655	0.708	0.623
Gender		–0.098	–0.186	0.001	0.000	–0.145	0.051
	p	0.149	0.058	0.992	0.999	0.117	0.578
Relationship	Tau	0.055	0.026	0.093	–0.056	–0.102	–0.003
	p	0.396	0.779	0.314	0.367	0.246	0.969
Level of education	Tau	0.024	–0.102	0.142	0.020	0.080	–0.030
	p	0.684	0.234	0.084	0.713	0.322	0.704
Sleep disturbances	Tau	–0.292	–0.195	–0.377	–0.127	–0.104	–0.131
	p	0.0001	0.040	0.0001	0.050	0.261	0.151
Functional care	Tau	–0.173	–0.224	–0.067	–0.143	–0.270	0.003
	p	0.012	0.022	0.498	0.029	0.004	0.973
Emotional help	Tau	0.122	0.136	0.071	0.060	0.122	0.011
	p	0.077	0.164	0.468	0.357	0.190	0.908
ADI–12 Caregivers‘s	Tau	–0.403	–0.361	–0.475	–0.255	–0.356	–0.257
	p	0.0001	0.0001	0.0001	0.0001	0.0001	0.001
ECAS–BS	Tau	–0.010	–0.001	–0.022	–0.178	–0.162	–0.210
	p	0.876	0.991	0.810	0.005	0.019	0.017
behavioral disinhibition	Tau	–0.050	–0.051	–0.058	0.006	–0.034	0.061
	p	0.357	0.526	0.443	0.911	0.675	0.417
apathy/inertia	Tau	0.023	0.019	0.024	0.061	0.047	0.038
	p	0.674	0.811	0.749	0.258	0.553	0.611
loss of sympathy empathy	Tau	–0.043	–0.014	–0.113	0.080	0.046	–0.006
	p	0.432	0.859	0.131	0.140	0.562	0.938
perseverative/ stereotype	Tau	–0.122	–0.145	–0.115	0.056	0.186	0.006
	p	0.025	0.070	0.128	0.304	0.020	0.937
change in eating behavior	Tau	0.055	0.084	0.029	0.015	–0.009	0.045
	p	0.308	0.294	0.703	0.785	0.913	0.547
Disease duration	Tau	0.103	0.228	0.002	0.021	0.057	–0.014
	p	0.068	0.005	0.981	0.688	0.462	0.850
Time from diagnosis	Tau	–0.024	0.028	–0.091	–0.012	0.042	–0.072
	p	0.676	0.736	0.257	0.827	0.591	0.344
ALSFRS–R	Tau	0.093	0.043	0.133	0.162	0.239	0.156
	p	0.109	0.610	0.099	0.003	0.003	0.019

ACSA: Anamnestic Comparative Self-Assessment; ADI-12: ALS Depression Inventory–12 items; ALSFRS-R: ALS Functional Rating Scale–revised version; QOLLTI-F: Quality of Life in Life-Threatening Illness – Family Carer Version; ECAS-BS: Edinburgh Cognitive and Behavioral ALS Screen - Behavioral Score. *Statistically significant correlations are shown in bold.

Table 4 Comparison of individual domains of the QOLLTI-F in the caregivers of patients with amyotrophic lateral sclerosis between Polish and German population.

Domains of the QOLLTI-F	Total (n = 162); SD; IQR	Germany (n = 83); SD; IQR	Poland (n = 79); SD; IQR	t	p
Environment	7.20 ± 2.65	7.0 ± 2.6	7.4 ± 2.8	–1.031	0.152
	(5.0–10.0)	(5.0–9.5)	(5.5–10.0)
Patient state	6.65 ± 3.3*	6.7 ± 3.0	6.6 ± 3.6	0.343	0.857
	(4.0–10.0)	(4.0–10.0)	(4.0–10.0)
Caregiver’s own state	7.19 ± 1.81	7.0 ± 1.8	7.4 ± 1.8	–1.408	0.161
	(5.8–8.4)	(5.4–8.2)	(6.2–8.8)
Caregiver’s outlook	6.92 ± 1.63	6.3 ± 1.4	7.6 ± 1.6	–5.321	0.001
	(6.0–7.9)	(5.7–7.3)	(6.3–9.0)
Quality of care	8.12 ± 2.03	8.2 ± 2.1	8.0 ± 1.9	0.533	0.330
	(7.5–9.5)	(7.5–9.5)	(7.0–9.5)
Relationships	7.23 ± 2.31	7.0 ± 2.3	7.5 ± 2.3	–1.548	0.092
	(5.5–9.0)	(5.0–9.0)	(6.0–9.5)
Financial concerns	7.71 ± 2.99	7.8 ± 2.9	7.7 ± 3.1	0.204	0.897
	(6.0–10.0)	(5.8–10.0)	(6.0–10.0)
QOLLTI-F	7.1	7.02	7.32	1.408	0.16

QOLLTI-F: Quality of Life in Life-Threatening Illness – Family Carer Version. *Statistically significant correlations are underlined and bold; the best values only underlined and the worst only in bold.

Table 5 Correlations between individual QoL domains on the QOLLTI-F scale in the caregivers of patients with amyotrophic lateral sclerosis and ALSFRS-R, disease duration, time from diagnosis and ECAS-BS (in individual countries and in total) in patients.

Domains of the QOLLTI-F	Variable	All caregivers p Value	Poland p Value	Germany p Value
Environment	ALSFRS-R	0.003*	0.002	0.218
	Disease duration	0.995	0.580	0.379
	Time from diagnosis	0.095	0.656	0.043
	ECAS-BS	0.626	0.618	0.778
Patient state	ALSFRS-R	0.045	0.556	0.023
	Disease duration	0.448	0.763	0.224
	Time from diagnosis	0.276	0.158	0.978
	ECAS-BS	0.013	0.107	0.056
Caregiver’s own state	ALSFRS-R	0.001	0.002	0.115
	Disease duration	0.727	0.561	0.906
	Time from diagnosis	0.965	0.875	0.881
	ECAS-BS	0.003	0.011	0.085
Caregiver’s outlook	ALSFRS-R	0.921	0.101	0.336
	Disease duration	0.131	0.052	0.868
	Time from diagnosis	0.229	0.051	0.716
	ECAS-BS	0.879	0.679	0.228
Quality of care	ALSFRS-R	0.816	0.869	0.834
	Disease duration	0.221	0.059	0.697
	Time from diagnosis	0.646	0.252	0.730
	ECAS-BS	0.101	0.574	0.088
Relationship	ALSFRS-R	0.609	0.345	0.897
	Disease duration	0.351	0.930	0.562
	Time from diagnosis	0.918	0.709	0.516
	ECAS-BS	0.127	0.780	0.035
Financial concerns	ALSFRS-R	0.059	0.089	0.262
	Disease duration	0.805	0.136	0.134
	Time from diagnosis	0.099	0.028	0.484
	ECAS-BS	0.514	0.990	0.396

QOLLTI-F: Quality of Life in Life-Threatening Illness – Family Carer Version; ALSFRS-R: ALS Functional Rating Scale–revised version; ECAS-BS: Edinburgh Cognitive and Behavioral ALS Screen - Behavioral Score. *Statistically significant positive correlations are underlined and bold, while statistically significant negative correlations are only bold.

Table 6 Correlations between ADI-12 and psychological, socio-demographic factors and personal experience of the caregivers of patients with amyotrophic lateral sclerosis.

		ADI-12
		All caregivers n = 164	Poland n = 80	Germany n = 84
Age	Tau	0.022	0.000	0.096
	p	0.683	0.997	0.209
Gender	Tau	0.151	0.158	0.010
	p	0.022*	0.097	0.912
Level of education	Tau	–0.83	0.069	0.098
	p	0.142	0.405	0.214
Relationship	Tau	0.024	0.106	–0.020
	p	0.701	0.239	0.821
Sleep disturbances	Tau	0.239	0.117	0.349
	p	0.0001	0.218	0.0001
ALSFRS–R	Tau	–0.183	–0.236	–0.147
	p	0.001	0.004	0.050
ECAS–BS	Tau	0.092	0.067	0.084
	p	0.151	0.480	0.347
behavioral disinhibition	Tau	–0.052	0.068	–0.140
	p	0.337	0.398	0.063
apathy/inertia	Tau	–0.148	–0.170	–0.134
	p	0.006	0.034	0.074
loss of sympathy empathy	Tau	–0.057	–0.114	–0.016
	p	0.293	0.154	0.837
perseverative/ stereotype	Tau	–0.084	–0.211	0.017
	p	0.121	0.008	0.823
change in eating behavior	Tau	–0.076	–0.008	–0.136
	p	0.159	0.915	0.071
Functional care	Tau	0.067	0.131	0.135
	p	0.341	0.010	0.321
Emotional help	Tau	0.036	0.088	0.092
	p	0.631	0.404	0.387

ADI–12: ALS Depression Inventory–12 items; ALSFRS–R: ALS Functional Rating Scale–revised version; ECAS-BS: Edinburgh Cognitive and Behavioral ALS Screen - Behavioral Score. *Statistically significant correlations are shown in bold.