Quality of life study for caregivers of people with uncontrolled focal-onset seizures

Figures & data

Table 1. Caregivers’ socio-demographic details.

Variable	N	Proportion (%)
Age	N = 345
18–24 years old	47	13.62
25–34 years old	133	38.55
35–44 years old	90	26.09
45–54 years old	49	14.20
55–64 years old	19	5.51
65–74 years old	5	1.45
More than 75 years old	2	0.58
Gender	N = 343
Female	138	40.23
Male	204	59.48
Prefer not to say	1	0.29
Occupation	N = 343
Full-time employee	206	60.06
Full-time & part-time employee	5	1.46
Full-time employee & full-time caregiver	4	1.17
Part-time employee	49	14.29
Part-time employee & full-time caregiver	2	0.58
Part-time employee & student	1	0.29
Full-time caregiver	40	11.66
Full-time caregiver & student	1	0.29
Full-time caregiver & retired	1	0.29
Full-time caregiver & other	1	0.29
Student	13	3.79
Student & retired	1	0.29
Retired	12	3.5
Other	7	2.04
Degree	N = 342
Yes	275	80.41
No	67	19.59

Abbreviation. N, number of observations.

Table 2. Socio-demographic characteristics and clinical data of the individuals with FOS.

Variable	N	Proportion (%)
Age of patient	N = 345
18–30 years old	88	25.51
31–44 years old	78	22.61
45–64 years old	79	22.9
More than 65 years old	100	28.99
Time of diagnosis	N = 343
0–5 years	63	18.37
6–10 years	125	36.44
11–15 years	86	25.07
16–20 years	32	9.33
More than 20 years	30	8.75
Not sure	7	2.04
FOS frequency in the past 28 days	N = 342
3	123	35.96
4	114	33.33
5–10	84	24.56
More than 10	14	4.09
Not sure	7	2.05
Longest seizure-free period (days) in the past 28 days	N = 342
0–5	130	38.01
6–15	133	38.89
16–20	49	14.33
21–27	11	3.22
Not sure	19	5.56
Seizure type in the past 28 days	N = 340
Focal aware	121	35.59
Focal impaired awareness	176	51.76
Focal to bilateral tonic-clonic	36	10.59
Not sure	7	2.06
Number of disabling seizures (i.e. impaired awareness seizures or focal to bilateral clonic-tonic seizures) in the past 28 days	N = 340
1	51	15.0
2–5	198	58.24
6–10	70	20.59
More than 10	16	4.71
Not sure	5	1.47
Number of anti-seizure medication over lifetime	N = 340
2	116	34.12
3	119	35.0
4	64	18.82
More than 4	28	8.24
Not sure	13	3.82

Abbreviation. N, number of observations.

Table 3. Caregiver burden characteristics.

Variable	N	Proportion (%)
Hours spent caring (per week)	N = 340
1–5	34	10.0
6–14	73	21.47
15–24	95	27.94
25–34	75	22.06
35–44	37	10.88
45–54	17	5.0
More than 55	9	2.65
Number of GP or hospital appointments in the past 28 days	N = 339
0	26	7.67
1–3	177	52.21
4–6	110	32.45
7–9	19	5.6
More than 10	7	2.06
Type of healthcare professional seen in the past 28 days	N = 316
Neurologist or epilepsy specialist nurse	157	49.69
GP	53	16.77
Epilepsy specialists and GP	77	24.36
Epilepsy specialists, GP, and other healthcare professionals	26	8.23
Unsure	3	0.95

Abbreviations. GP, general practitioner; N, number of observations.

Figure 1. Percentages reporting each level for the EQ-5D-5L dimensions.

Figure 2. Percentages reporting each level for the CarerQol-7D dimensions.

Table 4. Exploratory multivariate regression results for the EQ-5D-5L.

EQ-5D-5L score	Coefficient	SE	P value	95% Confidence intervals
Age
18–24 years old	Reference	N/A	N/A	N/A	N/A
25–34 years old	−0.026	0.049	.593	−0.122	0.070
35–44 years old	−0.029	0.052	.566	−0.131	0.072
45–54 years old	−0.088	0.058	.13	−0.203	0.026
55–64 years old	−0.175	0.081	.031	−0.334	−0.016
65–74 years old	−0.113	0.131	.39	−0.372	0.145
More than 75 years old	−0.343	0.202	.091	−0.740	0.055
Gender (male)	−0.035	0.031	.258	−0.097	0.026
Degree	0.011	0.040	.789	−0.069	0.090
Country
France	Reference	N/A	N/A	N/A	N/A
Germany	0.044	0.063	.482	−0.080	0.168
Italy	0.080	0.057	.159	−0.031	0.191
Spain	0.134	0.063	.033	0.011	0.257
Sweden	−0.074	0.062	.238	−0.197	0.049
UK	0.122	0.056	.031	0.011	0.233
Length of diagnosis (years)
0–5	Reference	N/A	N/A	N/A	N/A
6–10	−0.056	0.046	.225	−0.147	0.035
11–15	0.061	0.051	.237	−0.040	0.161
16–20	−0.040	0.064	.527	−0.165	0.085
More than 20	0.048	0.067	.474	−0.084	0.179
Not sure	−0.319	0.143	.026	−0.600	−0.038
FOS frequency in the past 28 days
3	Reference	N/A	N/A	N/A	N/A
4	0.008	0.039	.833	−0.069	0.085
5–10	0.009	0.051	.852	−0.090	0.109
More than 10	−0.030	0.098	.76	−0.222	0.163
Not sure	0.363	0.173	.037	0.023	0.704
Longest seizure-free period (days) in the past 28 days
0–5	Reference	N/A	N/A	N/A	N/A
6–15	0.035	0.039	.372	−0.042	0.111
16–20	−0.003	0.055	.958	−0.112	0.106
21–27	−0.029	0.100	.769	−0.226	0.167
Not sure	−0.055	0.076	.472	−0.204	0.095
Seizure type in the past 28 days
Focal aware	Reference	N/A	N/A	N/A	N/A
Focal impaired awareness	−0.047	0.035	.182	−0.115	0.022
Focal to bilateral tonic-clonic	−0.061	0.056	.272	−0.171	0.048
Not sure	−0.001	0.124	.993	−0.245	0.243
Number of disabling seizures in the past 28 days
1	Reference	N/A	N/A	N/A	N/A
2–5	−0.130	0.047	.006	−0.222	−0.038
6–10	−0.193	0.062	.002	−0.315	−0.071
More than 10	−0.231	0.100	.021	−0.427	−0.035
Not sure	−0.346	0.183	.059	−0.706	0.014
Number of anti-seizure medications over lifetime
2	Reference	N/A	N/A	N/A	N/A
3	−0.013	0.039	.729	−0.090	0.063
4	−0.037	0.051	.463	−0.137	0.063
More than 4	0.040	0.066	.538	−0.089	0.170
Not sure	0.082	0.091	.37	−0.098	0.261
Time spent caring per week (hours)
1–5	Reference	N/A	N/A	N/A	N/A
6–14	0.003	0.061	.967	−0.118	0.123
15–24	0.002	0.063	.971	−0.121	0.126
25–34	−0.044	0.065	.495	−0.173	0.084
35–44	−0.034	0.073	.643	−0.178	0.110
45–54	−0.067	0.086	.437	−0.236	0.102
More than 55	−0.078	0.109	.478	−0.293	0.138
Type of care provided
Giving first aid or emergency medication	Reference	N/A	N/A	N/A	N/A
Staying with the individual/ seeing them home safely after a seizure	−0.027	0.035	.442	−0.096	0.042
Noting any pattern or trigger to their seizures	0.015	0.037	.69	−0.058	0.087
Everyday tasks	0.024	0.035	.492	−0.045	0.094
Providing psychological support	−0.065	0.033	.052	−0.131	0.001
Other	0.059	0.100	.559	−0.139	0.256
Constant	0.837	0.111	0	0.619	1.055

Abbreviations. N/A, not applicable; SE, standard error.

Table 5. Exploratory multivariate regression results for the CarerQol-7D score.

CarerQol-7D score	Coefficient	SE	P value	95% Confidence intervals
Age
18–24	Reference	N/A	N/A	N/A	N/A
25–34 years old	−2.985	3.595	.407	−10.066	4.097
35–44 years old	−3.443	3.857	.373	−11.039	4.154
45–54 years old	−0.837	4.308	.846	−9.322	7.648
55–64 years old	−4.952	5.499	.369	−15.783	5.880
65–74 years old	0.992	8.764	.910	−16.270	18.254
More than 75 years old	10.162	13.364	.448	−16.161	36.485
Gender (male)	−0.845	2.256	.708	−5.288	3.598
Degree	0.523	2.867	.856	−5.125	6.170
Country
France	Reference	N/A	N/A	N/A	N/A
Italy	−0.077	3.653	.983	−7.273	7.118
Spain	1.902	3.962	.632	−5.902	9.705
Sweden	−8.909	3.954	.025	−16.696	−1.121
UK	−5.826	3.638	.111	−12.991	1.339
Length of diagnosis (years)
0–5	Reference	N/A	N/A	N/A	N/A
6–10	−3.352	3.357	.319	−9.964	3.260
11–15	−2.058	3.648	.573	−9.243	5.127
16–20	−2.725	4.472	.543	−11.533	6.083
More than 20	−2.258	5.006	.652	−12.119	7.602
Not sure	−10.335	11.715	.379	−33.409	12.739
FOS frequency in the past 28 days
3	Reference	N/A	N/A	N/A	N/A
4	−3.479	2.773	.211	−8.941	1.983
5–10	−7.303	3.652	.047	−14.496	−0.110
More than 10	−9.021	6.778	.184	−22.371	4.330
Not sure	−7.700	12.495	.538	−32.312	16.912
Longest seizure-free period (days) in the past 28 days
0–5	Reference	N/A	N/A	N/A	N/A
6–15	−0.307	2.787	.912	−5.797	5.182
16–20	−5.689	3.879	.144	−13.330	1.951
21–27	5.145	7.032	.465	−8.706	18.996
Not sure	1.226	5.094	.810	−8.808	11.260
Seizure type in the past 28 days
Focal aware	Reference	N/A	N/A	N/A	N/A
Focal impaired awareness	−2.327	2.460	.345	−7.172	2.518
Focal to bilateral tonic-clonic	5.698	3.993	.155	−2.167	13.563
Not sure	13.687	10.467	.192	−6.930	34.305
Number of disabling seizures in the past 28 days
1	Reference	N/A	N/A	N/A	N/A
2–5	2.325	3.252	.475	−4.080	8.731
6–10	2.481	4.387	.572	−6.161	11.122
More than 10	−1.593	6.754	.814	−14.896	11.711
Not sure	−14.797	15.347	.336	−45.027	15.432
Number of anti-seizure medications over lifetime
2	Reference	N/A	N/A	N/A	N/A
3	−3.063	2.784	.272	−8.547	2.421
4	−4.635	3.627	.202	−11.778	2.508
More than 4	−3.995	4.662	.392	−13.178	5.188
Not sure	9.172	7.083	.197	−4.780	23.125
Time spent caring per week (hours)
1–5	Reference	N/A	N/A	N/A	N/A
6–14	9.151	4.360	.037	0.563	17.739
15–24	4.698	4.422	.289	−4.013	13.408
25–34	6.425	4.543	.159	−2.524	15.373
35–44	9.480	5.099	.064	−0.564	19.524
45–54	0.330	5.925	.956	−11.340	12.000
More than 55	17.974	7.408	.016	3.383	32.565
Type of care provided
Giving first aid or emergency medication	Reference	N/A	N/A	N/A	N/A
Staying with the individual/ seeing them home safely after a seizure	3.599	2.488	.149	−1.302	8.500
Noting any pattern or trigger to their seizures	3.312	2.533	.192	−1.678	8.301
Everyday tasks	2.063	2.498	.410	−2.859	6.984
Providing psychological support	−1.506	2.362	.524	−6.159	3.147
Other	−6.943	7.070	.327	−20.869	6.982
Constant	76.937	8.027	.000	61.127	92.748

Abbreviations. N/A, not available; SE, standard error.

Table 6. EQ-5D-5L, CarerQol-7D, WPAI:SHP scores and cost per caregiver based on FOS frequency.

Variable	N	Mean (SD)	Median	Min	Max	95% CI
Subgroup FOS = 3
EQ-5D index score	122	0.64 (0.26)	0.67	0.007	1	0.59	0.68
EQ-VAS score	122	65.43 (21.52)	69	10	100	61.57	69.29
CarerQol-7D score	109	78.62 (14.82)	79.1	34.9	100	75.81	81.43
CarerQol-VAS	109	6.66 (2.06)	7	1	10	6.26	7.05
Cost of productivity loss per caregiver per one-week period	93	227.25 (404.59)	110.8	0	3,351.7	143.85	310.65
WPAI:SHP score 1	92	21.63 (22.19)	14.28	0	100	17.04	26.23
WPAI:SHP score 2	91	49.67 (25.27)	60	0	100	44.4	54.93
WPAI:SHP score 3	91	58.48 (25.53)	63.63	0	100	53.17	63.8
WPAI:SHP score 4	121	53.47 (23.61)	60	0	100	49.21	57.72
Subgroup FOS +4
EQ-5D index score	219	0.58 (0.28)	0.59	−0.241	1	0.55	0.62
EQ-VAS score	219	63.62 (21.35)	66	0	100	60.78	66.46
CarerQol-7D score	184	69.05 (19.87)	71.9	20	100	66.15	71.94
CarerQol-VAS	184	6.63 (1.85)	7	1	10	6.36	6.9
Cost of productivity loss per caregiver per one-week period	160	320.8 (489.73)	166.2	0	4,653.6	244.33	397.26
WPAI:SHP score 1	158	28.48 (24.54)	22.22	0	100	24.99	32.7
WPAI:SHP score 2	155	55.61 (24.86)	60	0	100	51.66	59.55
WPAI:SHP score 3	155	65.66 (25.87)	73.07	0	100	61.55	69.76
WPAI:SHP score 4	212	57.97 (23.92)	60	0	100	54.73	61.21

Abbreviations. CI, confidence intervals; max, maximum; min, minimum; SD, standard deviation; SE, standard error.