1Department of Family Medicine and Health Promotion Center, Seoul National University Hospital, Seoul, Korea
2Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea
3Department of Counseling Psychology, Hanyang Cyber University, Seoul, Korea
4Cancer Policy Branch, National Cancer Control Institute, National Cancer Center, Goyang, Korea
5Department of Health Sciences and Technology, SAHIST and School of Medicine, Sungkyunkwan University, Seoul, Korea, Korea
6Department of Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
7Department of Epidemiology, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
8Department of Preventive Medicine and Public Health, Chonbuk National University School of Medicine, Cheonju, Korea
9Colorectal Cancer Center, Kyungpook National University Medical Center, Kyungpook National University School of Medicine, Daegu, Korea
10Department of Preventive Medicine, Kyungpook National University School of Medicine, Daegu, Korea
11College of Medicine/Graduate School of Health Science Business Convergence, Chungbuk National University, Cheongju, Korea
Copyright © 2016 by the Korean Cancer Association
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Outcome | Possible range | Minimum | Maximum | Mean | Standard deviation |
---|---|---|---|---|---|
Cancer communication | |||||
CCAT-PF | 0-90 | 1 | 60 | 23.7 | 8.7 |
Mental Health (HADS) | |||||
Patients' anxiety | 0-21 | 0 | 21 | 6.0 | 4.2 |
Patients' depression | 0-21 | 0 | 21 | 9.7 | 4.2 |
Caregivers' anxiety | 0-21 | 0 | 21 | 6.6 | 4.3 |
Caregivers' depression | 0-21 | 0 | 21 | 9.7 | 4.2 |
Quality of life | |||||
Patients' quality of life (EORTC QLQ C30) | |||||
Physical function | 0-100 | 0 | 100 | 61.0 | 26.0 |
Role function | 0-100 | 0 | 100 | 64.4 | 31.4 |
Emotional function | 0-100 | 0 | 100 | 69.9 | 26.8 |
Cognitive function | 0-100 | 0 | 100 | 70.2 | 26.4 |
Social function | 0-100 | 0 | 100 | 65.0 | 29.2 |
Overall quality of life | 0-100 | 0 | 100 | 54.1 | 22.4 |
Caregiver's quality of life (CQOL) | |||||
Burden | 0-40 | 0 | 40 | 22.8 | 8.4 |
Positive adaptation | 0-28 | 0 | 26 | 13.5 | 5.2 |
Disruptiveness | 0-28 | 3 | 28 | 18.6 | 5.9 |
Financial concern | 0-12 | 0 | 12 | 7.4 | 3.5 |
Total scorea) | 0-140 | 17 | 130 | 81.4 | 20.0 |
CCAT-PF, Cancer Communication Assessment Tool for Patients and Families; HADS, Hospital Anxiety and Depression Scale; EORTC QLQ 30, European Organization on Research and Treatment on Cancer–Quality of Life Questionnaire core module.
a) Sum of individual CQOL domain is not 140 as not all 35 items load on a domain.
Multivariable linear regression analyses were performed adjusting for patient’s and caregiver’s age, sex, educational level, cancer stage, and caregivers’ relationship to patients. FACC, Family Avoidance of Communication about Cancer; SE, standard error; CCAT-PF, Cancer Communication Assessment Tool for Patients and Families; HADS, Hospital Anxiety and Depression Scale; EORTC QLQ 30, European Organization on Research and Treatment on Cancer–Quality of Life Questionnaire core module.
Characteristic | Patients (n=990) | Caregivers (n=990) |
---|---|---|
Age (mean±SD, yr) | 59.5±12.9 | 50.0±14.5 |
Sex | ||
Male | 459 (46.4) | 375 (37.9) |
Female | 531 (53.6) | 615 (62.1) |
Marital status | ||
Married | 820 (82.8) | 793 (80.1) |
Unmarried | 169 (17.1) | 197 (19.9) |
Missing | 1 (0.1) | 0 |
Education | ||
Less than high school (< 9 yr) | 454 (45.9) | 246 (24.8) |
High school and above (≥ 9 yr) | 532 (53.7) | 740 (74.7) |
Missing | 4 (0.4) | 4 (0.4) |
Monthly income (KRW) | ||
< 2 million | 574 (58.0) | 465 (47.0) |
≥ 2 million | 406 (41.0) | 520 (52.5) |
Missing | 10 (1.0) | 5 (0.5) |
Cancer type | ||
Stomach | 111 (11.2) | - |
Lung and bronchus | 108 (10.9) | - |
Liver | 47 (4.7) | - |
Colorectal | 163 (16.5) | - |
Breast | 226 (22.8) | - |
Cervix and uterus | 58 (5.9) | - |
Other | 277 (28.0) | - |
SEER cancer stage (current) | ||
In situ and local | 279 (28.2) | - |
Regional | 295 (29.8) | - |
Distant | 383 (38.7) | - |
Unknown/missing | 33 (3.3) | - |
Time since diagnosis (mean±SD, yr) | 1.6±2.3 | - |
< 1 | 594 (60.0) | - |
1-5 | 327 (33.0) | - |
> 5 | 69 (7.0) | - |
Current treatment status | ||
Under initial treatment | 562 (56.8) | - |
On regular follow-up after treatment | 196 (19.8) | - |
On regular follow-up after cure | 26 (2.6) | - |
Under treatment for metastasis or Recurrence | 198 (20.0) | - |
Not sure | 4 (0.4) | - |
Other (e.g., treatment for second primary cancer) | 4 (0.4) | - |
Relationship with patient | ||
Spouse | - | 544 (54.9) |
Son/daughter | - | 185 (18.7) |
Son-/daughter-in-law | - | 47 (4.7) |
Parent | - | 146 (14.7) |
Sibling | - | 42 (4.2) |
Other | - | 14 (1.4) |
Missing | - | 12 (1.2) |
Living with patient | ||
Yes | - | 737 (74.4) |
No | - | 253 (25.6) |
FACC items (Cronbach α=0.88 for patient; 0.92 for caregiver) | Patient response | Caregiver response | Correlation between dyads |
|
---|---|---|---|---|
Spearman’s ρ | p-value | |||
1. Family members discourage me from talking about the cancer | 11.2±19.0 | 15.6±20.1 | 0.13 | < 0.001 |
2. In my family, the motto about cancer is ‘don't ask, don't tell' | 9.0±16.7 | 13.0±18.7 | 0.16 | < 0.001 |
3. If I start talking about cancer, family members change the subject | 10.2±17.9 | 15.1±19.5 | 0.20 | < 0.001 |
4. Almost no one in my family will talk with me about the cancer | 12.1±20.5 | 18.1±22.7 | 0.19 | < 0.001 |
5. Family members get upset with me if I talk about cancer | 11.9±19.6 | 15.7±20.1 | 0.13 | < 0.001 |
Mean score | 10.9±15.5 | 15.5±17.5 | 0.23 | < 0.001 |
Variable | Descriptive statistics | Patient-perceived FACC |
Caregiver-perceived FACC |
||||
---|---|---|---|---|---|---|---|
Mean±SD | Spearman's ρ | p-value | Mean±SD | Spearman's ρ | p-value | ||
Patient communication | |||||||
behavior | |||||||
Disclosure (range, 1-5) | 3.7±1.3 | - | -0.616 | < 0.001 | - | -0.027 | 0.396 |
Holding back | |||||||
Yes (%) | 4.4 | 1.91±0.93 | - | < 0.001 | 1.79±0.97 | - | 0.134 |
No (%) | 95.6 | 1.40±0.59 | - | 1.62±0.69 | - | ||
Caregiver communication | |||||||
behavior | |||||||
Disclosure (range, 1-5) | 3.3±1.2 | - | -0.05 | 0.116 | - | -0.1506 | < 0.001 |
Holding back | |||||||
Yes (%) | 10.2 | 1.75±0.90 | - | < 0.001 | 1.99±0.86 | - | < 0.001 |
No (%) | 89.8 | 1.39±0.56 | - | 1.53±0.63 | - |
Outcome | Possible range | Minimum | Maximum | Mean | Standard deviation |
---|---|---|---|---|---|
Cancer communication | |||||
CCAT-PF | 0-90 | 1 | 60 | 23.7 | 8.7 |
Mental Health (HADS) | |||||
Patients' anxiety | 0-21 | 0 | 21 | 6.0 | 4.2 |
Patients' depression | 0-21 | 0 | 21 | 9.7 | 4.2 |
Caregivers' anxiety | 0-21 | 0 | 21 | 6.6 | 4.3 |
Caregivers' depression | 0-21 | 0 | 21 | 9.7 | 4.2 |
Quality of life | |||||
Patients' quality of life (EORTC QLQ C30) | |||||
Physical function | 0-100 | 0 | 100 | 61.0 | 26.0 |
Role function | 0-100 | 0 | 100 | 64.4 | 31.4 |
Emotional function | 0-100 | 0 | 100 | 69.9 | 26.8 |
Cognitive function | 0-100 | 0 | 100 | 70.2 | 26.4 |
Social function | 0-100 | 0 | 100 | 65.0 | 29.2 |
Overall quality of life | 0-100 | 0 | 100 | 54.1 | 22.4 |
Caregiver's quality of life (CQOL) | |||||
Burden | 0-40 | 0 | 40 | 22.8 | 8.4 |
Positive adaptation | 0-28 | 0 | 26 | 13.5 | 5.2 |
Disruptiveness | 0-28 | 3 | 28 | 18.6 | 5.9 |
Financial concern | 0-12 | 0 | 12 | 7.4 | 3.5 |
Total score |
0-140 | 17 | 130 | 81.4 | 20.0 |
Outcome | Patient-perceived FACC |
Caregiver-perceived FACC |
||||
---|---|---|---|---|---|---|
Beta | SE | p-value | Beta | SE | p-value | |
Cancer communication | ||||||
CCAT-PF | 0.077 | 0.018 | < 0.001 | 0.060 | 0.016 | < 0.001 |
Mental Health (HADS) | ||||||
Patients' anxiety | 0.077 | 0.009 | < 0.001 | -0.001 | 0.008 | 0.849 |
Patients' depression | 0.062 | 0.009 | < 0.001 | 0.013 | 0.008 | 0.094 |
Caregivers' anxiety | 0.024 | 0.009 | 0.005 | 0.040 | 0.008 | < 0.001 |
Caregivers' depression | 0.013 | 0.008 | 0.116 | 0.050 | 0.007 | < 0.001 |
Quality of life | ||||||
Patients' quality of life (EORTC QLQ C30) | ||||||
Physical function | -0.209 | 0.054 | < 0.001 | 0.057 | 0.048 | 0.239 |
Role function | -0.295 | 0.065 | < 0.001 | -0.050 | 0.058 | 0.388 |
Emotional function | -0.449 | 0.054 | < 0.001 | 0.014 | 0.048 | 0.778 |
Cognitive function | -0.287 | 0.055 | < 0.001 | 0.013 | 0.049 | 0.792 |
Social function | -0.372 | 0.059 | < 0.001 | 0.000 | 0.053 | 0.999 |
Overall quality of life | -0.243 | 0.047 | < 0.001 | 0.052 | 0.041 | 0.207 |
Caregiver's quality of life (CQOL) | ||||||
Burden | -0.073 | 0.017 | < 0.001 | -0.038 | 0.016 | 0.015 |
Positive adaptation | 0.027 | 0.011 | 0.011 | -0.052 | 0.010 | < 0.001 |
Disruptiveness | -0.038 | 0.012 | 0.002 | -0.043 | 0.011 | < 0.001 |
Financial concern | -0.028 | 0.007 | < 0.001 | -0.009 | 0.006 | 0.160 |
Total score | -0.141 | 0.042 | 0.001 | -0.187 | 0.038 | < 0.001 |
Values are presented as number (%) unless otherwise indicated. SD, standard deviation; SEER, Surveillance, Epidemiology, and End Results.
Values are presented as mean±standard deviation or number. Higher score reflects higher levels of avoidance (range, 0-100).
FACC, Family Avoidance of Communication about Cancer; SD, standard deviation.
CCAT-PF, Cancer Communication Assessment Tool for Patients and Families; HADS, Hospital Anxiety and Depression Scale;
EORTC QLQ 30, European Organization on Research and Treatment on Cancer–Quality of Life Questionnaire core module. Sum of individual CQOL domain is not 140 as not all 35 items load on a domain.
Multivariable linear regression analyses were performed adjusting for patient’s and caregiver’s age, sex, educational level, cancer stage, and caregivers’ relationship to patients. FACC, Family Avoidance of Communication about Cancer; SE, standard error; CCAT-PF, Cancer Communication Assessment Tool for Patients and Families; HADS, Hospital Anxiety and Depression Scale; EORTC QLQ 30, European Organization on Research and Treatment on Cancer–Quality of Life Questionnaire core module.