Table 2.
Descriptive factors of patients and caregivers.
| Descriptive factors | Cronbach’s alpha a | Patients | Caregivers |
|---|---|---|---|
| n = 412 | |||
| Sex (male), % (n) | 53.6 (221) | 39.3 (162) | |
| Age (years), mean ± SD | 63.7 ± 11.1 | 58.3 ± 13.0 b | |
| Education, % (n) c | |||
| Low | 38.2 (157) d | 34.7 (143) | |
| Medium | 26.8 (110) d | 26.9 (111) | |
| High | 35.0 (144) d | 38.3 (158) | |
| Nationality (Dutch), % (n) | 95.9 (395) | 96.6 (398) | |
| Religiosity (yes), % (n) e | 40.0 (165) | 36.0 (148) f | |
| Relationship with the patient, % (n) | |||
| Caregiver is patient’s partner | 76.5 (315) | 76.5 (315) | |
| Caregiver is patient’s child | 13.6 (56) | 13.6 (56) | |
| Other g | 10.0 (41) | 10.0 (41) | |
| Time since diagnosis (months), mean ± SD | 16.9 ± 17.4 d | ||
| Line of systemic treatment during study participation | |||
| None | 24.0 (98) h | ||
| First line | 42.9 (175) h | ||
| Second line | 20.8 (85) h | ||
| ≥Third line | 12.3 (50) h | ||
| Tumor type, % (n) | |||
| Lung | 25.5 (105) | ||
| Pleura | 6.3 (26) | ||
| Oesophagogastric | 14.6 (60) | ||
| Pancreatic | 7.0 (29) | ||
| Other gastrointestinal | 12.1 (50) | ||
| Colorectal | 2.7 (11) | ||
| Brain | 12.6 (52) | ||
| Gynaecological | 10.0 (41) | ||
| Soft tissue | 2.7 (11) | ||
| Other (each type n<10) i | 6.6 (27) | ||
| Health-related quality of life (EORTC-QLQ-C30 subscale, 0-100), mean ± SD | .88 d | 63.1 ± 20.9 d | |
| Physical functioning (EORTC-QLQ-C30 subscale, 0-100), mean ± SD | .85 j | 71.3 ± 22.8 j | |
| Avoidance coping (UCL subscale, 8-32), mean ± SD | .73 j – .72 k | 15.7 ± 3.4 d | 15.0 ± 3.2 k |
| Active coping (UCL subscale, 7-28), mean ± SD | .82 l – .83 m | 19.8 ± 3.6 d | 20.6 ± 3.5 k |
| Patient-caregiver discordance in avoidance coping (discordant), % (n) | 54.7 (223) n | ||
| Patient-caregiver discordance in active coping (discordant), % (n) | 52.9 (216) n | ||
| Active engagement (ABO subscale, 1-5), mean ± SD | .77 o | 4.3 ± 0.5 p | |
| Protective buffering (ABO subscale, 1-5), mean ± SD | .70 q | 2.5 ± 0.5 m | |
| Overprotection (ABO subscale, 1-5), mean ± SD | .77 b | 2.4 ± 0.7 o | |
| Preference to know the likelihood of cure (yes), % (n) | 94.1 (385) j | 98.3 (405) | |
| Preference to know the 5-year mortality risk (yes), % (n) | 72.0 (296) d | 84.9 (349) f | |
| Preference to know the 2-year mortality risk (yes), % (n) | 71.3 (293) d | 85.6 (351) r | |
| Preference to know the 1-year mortality risk (yes), % (n) | 70.1 (288) d | 85.4 (351) f | |
| Perceived likelihood of cure, % (n) | |||
| Extremely likely | 2.2 (9) s | 2.9 (12) r | |
| Very likely | 2.0 (8) s | 3.2 (13) r | |
| Likely | 3.0 (12) s | 2.9 (12) r | |
| Possibly | 11.8 (48) s | 7.3 (30) r | |
| Unlikely | 15.0 (61) s | 12.9 (53) r | |
| Very unlikely | 13.1 (53) s | 16.6 (68) r | |
| Extremely unlikely | 53.0 (215) s | 54.1 (222) r | |
| Perceived likelihood of dying within 5 years, % (n) | |||
| Extremely unlikely | 5.4 (22) t | 2.2 (9) u | |
| Very unlikely | 2.5 (10) t | 1.5 (6) u | |
| Unlikely | 4.4 (18) t | 3.4 (14) u | |
| Possibly | 27.3 (111)t | 27.8 (113) u | |
| Likely | 11.3 (46) t | 10.3 (42) u | |
| Very likely | 15.2 (62) t | 15.5 (63) u | |
| Extremely likely | 33.9 (138) t | 39.2 (159) u | |
| Perceived likelihood of dying within 2 years, % (n) | |||
| Extremely unlikely | 7.4 (30) t | 3.7 (15) u | |
| Very unlikely | 6.1 (25) t | 3.9 (16) u | |
| Unlikely | 9.3 (38) t | 7.6 (31) u | |
| Possibly | 33.7 (137) t | 36.5 (148) u | |
| Likely | 9.6 (39) t | 9.6 (39) u | |
| Very likely | 14.7 (60) t | 17.2 (70) u | |
| Extremely likely | 19.2 (78) t | 21.4 (87) u | |
| Perceived likelihood of dying within 1 year, % (n) | |||
| Extremely unlikely | 14.0 (57) t | 8.4 (34) o | |
| Very unlikely | 11.1 (45) t | 7.4 (30) o | |
| Unlikely | 10.6 (43) t | 12.3 (50) o | |
| Possibly | 36.6 (149) t | 41.2 (167) o | |
| Likely | 7.1 (29) t | 9.1 (37) o | |
| Very likely | 8.8 (36) t | 9.9 (40) o | |
| Extremely likely | 11.8 (48) t | 11.6 (47) o | |
| Main source of prognostic perceptions, % (n) | |||
| Healthcare provider v | 63.9 (262) l | 66.6 (273) r | |
| Family or friends | 0.2 (1) l | 1.2 (5) r | |
| Support group | 1.7 (7) l | 0.5 (2) r | |
| Internet | 5.4 (22) l | 8.5 (35) r | |
| Books | 0.2 (1) l | 0.2 (1) r | |
| Personal beliefs | 28.5 (117) l | 22.9 (94)r | |
| Patient-caregiver discordance in main source of prognostic perceptions (discordant), % (n) | 33.1 (135) n | ||
Interpretation: <0.50 unacceptable, 0.50-0.60 poor, 0.60-0.70 questionable, 0.70-0.80 acceptable, 0.80-0.90 good, 0.90-1.00 excellent.
Caregivers: n = 401/412 (11 missing).
Low: elementary to low vocational education. Medium: up till medium level vocational education. High: high vocational or academic education.
Patients: n = 411/412 (1 missing).
Including Christianity, Islam, Buddhism, Hinduism, Judaism, Humanism, spirituality and “own belief”.
Caregivers: n = 411/412 (1 missing).
Including caregivers who are patient’s parent, sibling, aunt, uncle, cousin, friend or neighbor or who have another type of relationship.
Patients: n = 408/412 (4 missing).
Including melanoma, head and neck, thyroid, breast, vagina, prostate, bladder, kidney, adrenal cortex, bone, carcinoid and unknown primary tumors.
Patients: n = 409/412 (3 missing).
Caregivers: n = 409/412 (3 missing).
Patients: n = 410/412 (2 missing).
Caregivers: n = 407/412 (5 missing).
Patient-caregiver dyads: n = 408/412 (4 missing).
Caregivers: n = 405/412 (7 missing).
Caregivers: n = 408/412 (4 missing).
Caregivers: n = 404/412 (8 missing).
Caregivers: n = 410/412 (2 missing).
Patients: n = 406/412 (6 missing).
Patients: n = 407/412 (5 missing).
Caregivers: n = 406/412 (6 missing).
Including treating physician, second opinion physician, nurse, general practitioner or other healthcare provider.
Abbreviations: n: sample size; SD: standard deviation; EORTC-QLQ-C30: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire for Cancer; UCL: Utrecht Coping List; ABO: Active Engagement, Protective Buffering and Overprotection.