Table 1 Characteristics of validation study participants (Missing N = 0 unless stated)
Phase 1a (ii) Face validity: qualitative interview | Phase 1b (ii) Face validity: cognitive interview | Phase 2 (iii) Construct validity | Phase 3 (iv) Internal consistency, (v) Test-retest reliability & (vii) Time to complete | |
|---|---|---|---|---|
PATIENTS N | 90 | 73^ | 285 | 307 |
Age | ||||
Mean (SD) | 43.2 (15.4) | 44.8 (16.0) | 40.1 (12.8) | 41.9 (14.1) |
Gender | ||||
Female | 58 (64.4%) | 49 (67.1%) | 197 (69.1%) | 207 (67.4%) |
Primary diagnosis | ||||
Cancer | 34 (37.8%) | 33 (45.2%) | 86 (30.2%) | 90 (29.3%) |
HIV | 61 (67.8%) | 44 (60.3%) | 229 (80.4%) | 244 (79.5%) |
Of HIV+ pts: | ||||
On ART | 39 (63.9%) | 24 (54.5%) | 127 (55.5%)a | 140 (57.4%) |
Prior AIDS | ||||
diagnosis | 54 (88.5%) | 37 (84.1%) | 192 (83.8%) | 196 (80.3%) |
ECOG Functional status | ||||
Fully active | 10 (11.1%) | 8 (11.0%) | 21 (7.4%) | 29 (9.4%) |
Restricted | 24 (26.7%) | 24 (32.9%) | 65 (22.8%) | 79 (25.7%) |
Ambulatory | 17 (18.9%) | 17 (23.3%) | 79 (27.7%) | 71 (23.1%) |
Limited self care | 25 (27.8%) | 14 (19.2%) | 87 (30.5%) | 101 (32.9%) |
Completely disabled | 14 (15.6%) | 10 (13.7%) | 33 (11.6%) | 27 (8.8%) |
Household size | ||||
Mean (SD) | 5.2 (5.0)a | 4.9 (3.1)a | 5.3 (2.5)b | 5.5 (3.2) |
Responsible for children? | ||||
Yes | 68 (75.6%) | 54 (74.0%) | 232 (81.4%) | 238 (77.5%) |
Mean no. of children (SD) | 2.8 (1.8) | 2.9 (1.8) | 3.1 (1.96) | 3.1 (2.2) |
Location of home | ||||
Urban | 23 (25.6%) | 23 (31.5%) | 53 (18.6%) | 79 (25.7%) |
Peri-urban | 26 (28.9%) | 26 (35.6%) | 53 (18.6%) | 52 (16.9%) |
Rural | 41 (45.6%) | 24 (32.9%) | 179 (62.8%) | 176 (57.3%) |
Place of care | ||||
Home | 56 (62.2%) | 50 (68.5%) | 180 (63.2%) | 204 (66.4%) |
Inpatient | 27 (30.0%) | 16 (21.9%) | 74 (26.0%) | 79 (25.7%) |
Outpatient | 3 (3.3%) | 3 (4.1%) | 13 (4.6%) | 12 (3.9%) |
Day care | 4 (4.4%) | 4 (5.5%) | 18 (6.3%) | 12 (3.9%) |
Weeks under care | ||||
Mean (SD) | 51.4 (85.2)a | 62.6 (91.2)a | 46.0 (74.8) | 39.1 (69.5) |
Median | 15.0 | 25.0 | 12.0 | 8.0 |
FAMILY CARERS N | 38 | 29 | 199 | 200 |
Age | * | * | ||
Mean (SD) | 44.8 (17.5)b | 46.9 (18.3) | ||
Gender | * | * | ||
Female | 32 (84.5%)b | 26 (89.7%) | ||
Household size | * | * | ||
Mean (SD) | 7.1 (3.5)b | 6.8 (3.7) | ||
Responsible for children? | * | * | ||
Yes | 30 (78.9%)b | 24 (82.8%) | ||
Mean no. of children (SD) | 3.1 (1.6) | 3.0 (1.7) | ||
Location of home | * | * | ||
Urban | 4 (10.5%) | 4 (13.8%) | ||
Peri-urban | 10 (26.3%) | 10 (34.5%) | ||
Rural | 21 (55.3%) | 15 (51.7%) | ||
Missing | 3 | 0 |