Background
Methods
Sample
Ethics, consent and permissions
Study design and data collection
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General characteristics
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Quality of life: CareGiver Oncology Quality of Life questionnaire and the short-form 36
General organization
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Translation and cultural adaptation process
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Psychometric testing
Statistical analyses
Results
Sample characteristics
N = 87 | ||
---|---|---|
1. Caregivers | ||
Gender | Women | 58 (68.2) |
Men | 27 (31.8) | |
Age (years) | Mean ± SDa
| 60.0 ± 11.2 |
Living | With a partner | 72 (84.7) |
Alone | 13 (15.3) | |
Relationship with the patient | Partner | 55 (64.7) |
Children | 12 (14.1) | |
Othersc
| 18 (21.2) | |
Time of caregiving (months) | Median [IQR]b
| 8 [3–30] |
2. Patients | ||
Gender | Women | 43 (51.2) |
Men | 41 (48.8) | |
Age (years) | Mean ± SDa
| 65.0 ± 12.8 |
Cancer location | Breast | 23 (26.4) |
Lung | 22 (25.3) | |
Head and neck | 10 (11.5) | |
Hematologic | 8 (9.2) | |
Othersd
| 24 (27.6) | |
Stage | 0–1 | 12 (14.6) |
2 | 10 (12.2 | |
3 | 17 (20.7) | |
4 | 43 (52.4) | |
Metastasis | 45 (54.9) | |
Disease duration (months) | Median [IQR]b
| 11 [6–44] |
WHO PS | 0 | 50 (59.5) |
> = 1 | 34 (40.5) |
Construct validity and internal structural validity
Dimension (Items) | N | Mean ± SDa
| IIC min - max | IDV min - max | % floor effect | % ceiling effect | Alpha | INFIT min-max |
---|---|---|---|---|---|---|---|---|
Psychological well being (4) | 85 | 47,7 ± 22,0 | 0.67–0.78 | −0.16–0.64 | 0 | 2.6 | 0.87 | 0.78–1.28 |
Burden (4) | 85 | 83,8 ± 18,7 | 0.23–0.82 | −0.13–0.55 | 0 | 29.5 | 0.79 | 0.73–2.06 |
Relationship with healthcare (3) | 85 | 74,1 ± 17,0 | 0.19–0.42 | −0.18–0.38 | 0 | 10.3 | 0.57 | 0.62–1.38 |
Administration and finances (3) | 83 | 80,8 ± 20,5 | 0.42–0.60 | −0.11–0.48 | 0 | 30.8 | 0.71 | 0.77–1.23 |
Coping (3) | 84 | 68,3 ± 20,2 | 0.37–0.51 | −0.11–0.55 | 0 | 11.5 | 0.64 | 0.84–1.22 |
Physical well being (4) | 84 | 69,4 ± 21,0 | 0.56–0.68 | −0.21–0.67 | 0 | 6.4 | 0.81 | 0.79–1.24 |
Self-esteem (2) | 85 | 74,1 ± 20,7 | 0.62–0.62 | −0.15–0.22 | 0 | 20.5 | 0.75 | 0.97–1.13 |
Leisure time (2) | 85 | 54,8 ± 20,3 | 0.45–0.45 | −0.14–0.48 | 0 | 1.3 | 0.60 | 0.89–0.99 |
Social support (2) | 85 | 72,7 ± 22,0 | 0.61–0.61 | 0.04–0.33 | 0 | 25.6 | 0.76 | 0.95–1.02 |
Private life (2) | 80 | 50,6 ± 22,8 | 0.15–0.15 | −0.17–0.47 | 1.3 | 5.1 | 0.26 | 0.97–1.04 |
Index | 78 | 67,6 ± 11,8 |
External validity and discriminant validity
PsWB | B | RHC | AF | COP | PhWB | SE | LEI | SS | PL | Index | ||
---|---|---|---|---|---|---|---|---|---|---|---|---|
SF-36 | Physical functioning | 0,216*
| 0,139 | 0,103 | 0,164 | 0,177 | 0,207 | 0,028 | 0,241*
| 0,269*
| 0,266*
| 0,284*
|
Social functioning | 0,668**
| 0,623**
| 0,154 | 0,454**
| 0,514**
| 0,578**
| 0,017 | 0,514**
| 0,259*
| 0,469**
| 0,702**
| |
Role physical | 0,372**
| 0,308**
| 0,040 | 0,309**
| 0,409**
| 0,446**
| −0,040 | 0,334**
| 0,320**
| 0,344**
| 0,480**
| |
Role emotional | 0,618**
| 0,438**
| 0,129 | 0,290**
| 0,528**
| 0,635**
| 0,160 | 0,371**
| 0,313**
| 0,394**
| 0,642**
| |
Mental health | 0,722**
| 0,436**
| 0,098 | 0,339**
| 0,600**
| 0,587**
| 0,268*
| 0,478**
| 0,264*
| 0,338**
| 0,671**
| |
Vitality | 0,535**
| 0,386**
| 0,090 | 0,252*
| 0,436**
| 0,583**
| 0,166 | 0,526**
| 0,373**
| 0,277*
| 0,580**
| |
Bodily pain | 0,304**
| 0,181 | −0,013 | 0,345**
| 0,168 | 0,427**
| 0,005 | 0,447**
| 0,357**
| 0,280*
| 0,411**
| |
General health | 0,366**
| 0,293**
| −0,005 | 0,340**
| 0,389**
| 0,511**
| 0,055 | 0,430**
| 0,252*
| 0,294**
| 0,440**
| |
PCS SF36 | 0,124 | 0,081 | −0,001 | 0,189 | 0,111 | 0,217*
| −0,097 | 0,254*
| 0,245*
| 0,214 | 0,198 | |
MCS SF36 | 0,721**
| 0,545**
| 0,140 | 0,338**
| 0,567**
| 0,635**
| 0,240*
| 0,488**
| 0,239*
| 0,374**
| 0,703**
| |
QoL | VAS | 0,545**
| 0,518**
| −0,023 | 0,348**
| 0,551**
| 0,636**
| 0,088 | 0,620**
| 0,376**
| 0,304**
| 0,669**
|
Burden | VAS | −0,232*
| −0,622**
| 0,013 | −0,317**
| −0,295**
| −0,249*
| 0,040 | −0,289**
| −0,086 | −0,260*
| −0,396**
|
PsWB | B | RHC | AF | COP | PhWB | SE | LEI | SS | PL | Index | |
---|---|---|---|---|---|---|---|---|---|---|---|
Caregiver’s gender | |||||||||||
Women | 42,67 ± 21,40 | 82,50 ± 19,94 | 76,50 ± 17,67 | 81,39 ± 20,34 | 67,10 ± 21,61 | 66,44 ± 20,68 | 75,21 ± 20,87 | 53,01 ± 20,18 | 71,55 ± 21,93 | 50 ± 24,28 | 66,26 ± 12,07 |
Men | 58,71 ± 19,54 | 86,65 ± 15,67 | 69,13 ± 14,58 | 79,62 ± 21,35 | 70,98 ± 17,19 | 75,69 ± 20,82 | 71,75 ± 20,68 | 58,79 ± 20,45 | 75,46 ± 22,59 | 51,92 ± 19,90 | 70,52 ± 10,90 |
p value |
0,001
| 0,441 |
0,035
| 0,582 | 0,432 |
0,040
| 0,386 | 0,149 | 0,455 | 0,615 | 0,123 |
Caregiver living with a partner | |||||||||||
No | 42,78 ± 20,38 | 72,75 ± 24,52 | 78,52 ± 12,48 | 66,02 ± 26,23 | 56,41 ± 18,36 | 63,46 ± 19,90 | 77,88 ± 19,86 | 49,03 ± 24,18 | 61,53 ± 26,74 | 47,5 ± 26,87 | 60,85 ± 11,74 |
Yes | 48,66 ± 22,33 | 85,82 ± 16,90 | 73,37 ± 17,67 | 83,57 ± 18,27 | 70,53 ± 19,96 | 70,51 ± 21,21 | 73,43 ± 20,97 | 55,90 ± 19,56 | 74,82 ± 20,71 | 51,07 ± 22,39 | 68,68 ± 11,55 |
p value | 0,297 | 0,077 | 0,334 | 0,018 |
0,017
| 0,183 | 0,452 | 0,226 | 0,074 | 0,599 | 0,084 |
Relationship status | |||||||||||
Spouse | 51,78 ± 21,78 | 87,84 ± 13,73 | 72,72 ± 16,23 | 83,79 ± 17,46 | 71,75 ± 17,91 | 71,87 ± 21,33 | 74,31 ± 18,54 | 58,63 ± 17,98 | 74,09 ± 21,89 | 49,76 ± 22,12 | 69,41 ± 11,18 |
Child | 34,89 ± 22,36 | 67,01 ± 27,27 | 77,43 ± 20,75 | 68,93 ± 21,75 | 62,5 ± 25 | 63,02 ± 22,36 | 76,04 ± 24,69 | 45,83 ± 26,29 | 71,87 ± 22,69 | 43,18 ± 21,91 | 59,14 ± 13,00 |
Other | 44,09 ± 19,58 | 82,75 ± 19,86 | 76,38 ± 17,20 | 79,16 ± 26,23 | 62,03 ± 22,36 | 66,31 ± 19,07 | 72,22 ± 25,20 | 49,30 ± 20,77 | 69,44 ± 23,17 | 58,59 ± 24,88 | 67,36 ± 11,35 |
p value | 0,023 |
0,024
| 0,428 | 0,109 | 0,172 | 0,252 | 0,839 |
0,049
| 0,718 | 0,277 | 0,052 |
Caregiver’s age class | |||||||||||
40 – 59 years | 41,81 ± 19,55 | 81,49 ± 20,33 | 75,48 ± 16,16 | 79,16 ± 19,06 | 66,86 ± 20,53 | 67,87 ± 18,22 | 75 ± 19,66 | 49,12 ± 17,54 | 75,87 ± 20,30 | 50 ± 24,04 | 66,36 ± 10,48 |
>59 years | 53,86 ± 22,97 | 86,21 ± 16,77 | 72,81 ± 17,94 | 82,52 ± 22,11 | 69,91 ± 20,14 | 71,03 ± 23,78 | 73,21 ± 22,01 | 60,71 ± 21,48 | 69,64 ± 23,61 | 51,28 ± 21,80 | 69,06 ± 13,04 |
p value |
0,017
| 0,173 | 0,444 | 0,210 | 0,516 | 0,239 | 0,769 |
0,013
| 0,238 | 0,773 | 0,322 |
Patient’s gender | |||||||||||
Women | 48,20 ± 22,22 | 82,99 ± 21,35 | 71,80 ± 16,31 | 80,75 ± 20,69 | 66,27 ± 19,41 | 70,93 ± 21,85 | 71,51 ± 22,38 | 54,94 ± 22,35 | 72,67 ± 23,50 | 50 ± 21,18 | 67,41 ± 11,85 |
Men | 46,49 ± 21,69 | 84,90 ± 15,87 | 76,82 ± 17,72 | 81,66 ± 20,34 | 70,41 ± 21,42 | 67,34 ± 20,33 | 76,52 ± 18,99 | 54,87 ± 18,51 | 73,47 ± 20,76 | 51,28 ± 24,96 | 67,96 ± 12,05 |
p value | 0,729 | 0,695 | 0,198 | 0,805 | 0,398 | 0,353 | 0,356 | 0,920 | 0,956 | 0,992 | 0,972 |
Patient’s age class | |||||||||||
18 – 70 years | 49,38 ± 21,05 | 86,14 ± 16,85 | 75,77 ± 15,38 | 83,95 ± 19,21 | 70,37 ± 18,57 | 71,06 ± 18,30 | 74,30 ± 20,23 | 56,48 ± 20,56 | 75,23 ± 20,81 | 50 ± 25,37 | 69,09 ± 11,15 |
>70 years | 43,75 ± 23,15 | 79,93 ± 21,57 | 71,52 ± 19,81 | 75,89 ± 21,91 | 64,36 ± 23,24 | 65,73 ± 25,47 | 73,33 ± 22,19 | 52,08 ± 20,25 | 69,16 ± 24,06 | 51,78 ± 18,23 | 64,91 ± 12,96 |
p value | 0,219 | 0,159 | 0,405 | 0,096 | 0,160 | 0,511 | 0,916 | 0,319 | 0,282 | 0,681 | 0,117 |
Patient’s disease duration | |||||||||||
r | 0,061 | −0,110 | −0,168 | 0,007 | −0,030 | 0,024 | −0,070 | −0,094 | −0,299** | −0,264* | −0,187 |
0,582 | 0,317 | 0,127 | 0,952 | 0,785 | 0,832 | 0,524 | 0,396 |
0,006
|
0,019
| 0,104 | |
Caregiving duration | |||||||||||
r | −0,010 | −0,091 | −0,109 | −0,137 | −0,018 | −0,076 | 0,016 | −0,302** | −0,413** | −0,204 | −0,248* |
p value | 0,929 | 0,423 | 0,336 | 0,233 | 0,878 | 0,505 | 0,885 |
0,006
|
0,000
| 0,079 |
0,034
|
Reproducibility and sensitivity to change
Day- 30 | Day- 90 | |||
---|---|---|---|---|
No life eventsa
| No health changesb
| No life eventsa
| No health changesb
| |
Dimension |
N = 17 |
N = 39 |
N = 19 |
N = 29 |
Psychological well being | 0.64 | 0.57 | 0.65 | 0.54 |
Burden | 0.88 | 0.74 | 0.80 | 0.60 |
Relationship with healthcare | 0.53 | 0.46 | 0.43 | 0.60 |
Administration and finances | 0.88 | 0.78 | 0.73 | 0.81 |
Coping | 0.77 | 0.72 | 0.66 | 0.92 |
Physical well being | 0.84 | 0.60 | 0.87 | 0.69 |
Self-esteem | 0.67 | 0.74 | 0.48 | 0.59 |
Leisure time | 0.88 | 0.72 | 0.70 | 0.69 |
Social support | 0.63 | 0.52 | 0.53 | 0.58 |
Private life | 0.75 | 0.48 | 0.60 | 0.49 |
Index | 0.94 | 0.65 | 0.80 | 0.82 |
Day- 30 | Day- 90 | |||
---|---|---|---|---|
Improved | Worsened | Improved | Worsened | |
N = 20 |
N = 19 |
N = 24 |
N = 18 | |
Dimension | Deltaa
| Deltaa
| Deltaa
| Deltaa
|
Psychological well being | −6.67 | 4.28 | −11.46** | 9.19* |
Burden | 0.63 | 8.88 | 1.91 | 5.02 |
Relationship with healthcare | 9.58 | 4.63 | 6.60* | 4.17 |
Administration and finances | −2.91 | 3.43 | −4.69 | −7.03* |
Coping | −3.33 | 3.24 | −4.86 | 6.62 |
Physical well being | −0.31 | 4.51 | 0.78 | 7.99 |
Self-esteem | 7.50 | 3.29 | 0 | −0.78 |
Leisure time | 8.13* | 4.61 | 4.69 | −0.74 |
Social support | 5.00 | 1.97 | 9.89* | −8.82 |
Private life | 0.66 | 10.29 | 4.67 | 3.57 |
Index | 2.21 | 3.61 | 0.75 | 4.00 |