Table 5.
Primary caregiver characteristics.
| Study | n | Age (mean) | Male (n, %) |
Spouse (n, %) |
Parent (n, %) |
Child (n, %) |
Employed (n, %) | Would choose HMV again (n, %) | NIV (n, %) |
|---|---|---|---|---|---|---|---|---|---|
| Studies included caregivers of patients with NMD and RTD only | |||||||||
| Evans et al. [19] | 12 | 55 | 3 (25) | 6 (50) | 5 (42) | 1 (8) | NR | NR | 0 |
| Kaub-Wittemer et al. [25]∗ | 52 | 56 | 10 (19) | 51 (98) | 0 | 1 (2) | 34 (65)¶ | 46 (88)‡‡ | 32 (62) |
| van Kesteren et al. [27] | 31‡ | NR | NR | 12 (39) | 19 (61) | 0 | NA | 29 (94) | 23 (74) |
| Moss et al. [29]∗ | 36 | NR | 10 | NR | NR | NR | NA | 30 (83) | 7 (19) |
| Aggregate data (n, %†) | 131 | 56 | 23 (23) | 69 (73) | 24 (25) | 2 (2) | NA | 105 (88) | 62 (47) |
|
| |||||||||
| Studies included caregivers of patients with NMD, RTD, and other conditions | |||||||||
| Marchese et al. [18] | 77 | NR | 15 (19) | 55 (71) | 18 (23) | 3 (4) | NR | 42 (55)§§ | 77 (100) |
| Fernández-Álvarez et al. [21] | 20§ | 51 | 5 (25) | NR | NR | NR | 14 (70) | NR | 19 (95) |
| Tsara et al. [24] | 50 | 48‖ | NR | 21 (42) | NR | 20 (40) | 24 (48)∗∗ | NR | 44 (88) |
| Sevick and Bradham [28] | 277 | 53 | 69 (25) | 127 (46) | 111 (40) | NR | 119 (43)†† | NR | 48 (96) |
| Aggregate data (n%†) | 424 | 51 | 89 (24) | 203 (54) | 129 (34) | 20 (5) | 157 (45) | 42 (55) | 188 (44) |
|
| |||||||||
| All studies examining caregiver burden | |||||||||
| Aggregate data total (n, %†) | 555 | 53 | 112 (24) | 272 (55) | 153 (31) | 25 (5) | 191 (48) | 157 (80) | 250 (45) |
HMV, home mechanical ventilation; NA, not assessed; NR, not reported.
∗Caregivers of amyotrophic lateral sclerosis (ALS) patients exclusively; †% aggregate proportion was based on total clinically evaluable population where both the numerator and denominator were available within the study. ‡For 16 patients both parents were interviewed; however only one was considered in the table. §Caregivers for the subgroup of highly dependent patients (Katz index level C). ‖Median. ¶6 caregivers of NIV and 12 caregivers of TV users quit work to care for HMV user. This value is assuming that all caregivers were employed initially. ∗∗Several caregivers quit their job or had to ask for time off work; however this number is not reported; ††179 had been employed. 60 stopped working; 40 decreased their hours; 16 changed jobs; and 3 increased hours. ‡‡31 caregivers of NIV users and 15 of TV users.
§§Including all parents.