Introduction
Background on the development of the caregiver FACT-G
Method
Participants
Procedures
Instruments
Caregiver QOL
Not at all | A little bit | Somewhat | Quite a bit | Very much | ||
---|---|---|---|---|---|---|
Physical well-being | ||||||
PW1F1# | I have a lack of energy | 0 | 1 | 2 | 3 | 4 |
PW1F2# | I have nausea | 0 | 1 | 2 | 3 | 4 |
PW1F3# | Because of my physical condition, I have trouble meeting the needs of my family | 0 | 1 | 2 | 3 | 4 |
PW1F4# | I have pain | 0 | 1 | 2 | 3 | 4 |
PW1F5# | Are you currently taking any medication or receiving other medical treatment? No Yes, if yes, I am bothered by the side effects of my treatment | 0 | 1 | 2 | 3 | 4 |
PW1F6# | I feel ill | 0 | 1 | 2 | 3 | 4 |
PW1F7# | I am forced to spend time in bed | 0 | 1 | 2 | 3 | 4 |
Social/family well-being | ||||||
SW1F1 | I feel close to my friends | 0 | 1 | 2 | 3 | 4 |
SW1F2 | I get emotional support from my family | 0 | 1 | 2 | 3 | 4 |
SW1F3 | I get support from my friends | 0 | 1 | 2 | 3 | 4 |
SW1F4 | My family has accepted the illness | 0 | 1 | 2 | 3 | 4 |
SW1F5 | I am satisfied with family communication about the illness | 0 | 1 | 2 | 3 | 4 |
SW1F6 | I feel close to my partner (or the person who is my main support) | 0 | 1 | 2 | 3 | 4 |
Regardless of your current level of sexual activity, please answer the following question. If you prefer not to answer it, check this box and go to the next section | ||||||
SW1F7 | I am satisfied with my sex life | 0 | 1 | 2 | 3 | 4 |
Emotional well-being | ||||||
EW1F1# | I feel sad | 0 | 1 | 2 | 3 | 4 |
EW1F2 | I am satisfied with how I’m coping with my family member’s illness | 0 | 1 | 2 | 3 | 4 |
EW1F3# | I am losing hope in the fight against my family member’s illness | 0 | 1 | 2 | 3 | 4 |
EW1F4# | I feel nervous | 0 | 1 | 2 | 3 | 4 |
EW1F5# | I worry about my family member dying | 0 | 1 | 2 | 3 | 4 |
EW1F6# | I worry that my family member’s condition will get worse | 0 | 1 | 2 | 3 | 4 |
Functional well-being | ||||||
FW1F1 | I am able to work (include work at home) | 0 | 1 | 2 | 3 | 4 |
FW1F2 | My work (include work at home) is fulfilling | 0 | 1 | 2 | 3 | 4 |
FW1F3 | I am able to enjoy life | 0 | 1 | 2 | 3 | 4 |
FW1F4 | I have accepted my family member’s illness | 0 | 1 | 2 | 3 | 4 |
FW1F5 | I am sleeping well | 0 | 1 | 2 | 3 | 4 |
FW1F6 | I am enjoying the things I usually do for fun | 0 | 1 | 2 | 3 | 4 |
FW1F7 | I am content with the quality of my life right now | 0 | 1 | 2 | 3 | 4 |
Validity testing
Data analysis
Results
Participant characteristics
Acceptability and precision
Prostate RCT
Subscales and items | Prostate cancer study | Advanced cancer study | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
N | Mean | SD | % missing | % at floor | % at ceiling | Item-total | N | Mean | SD | % missing | % at floor | % at ceiling | Item-total | |
Physical well-being subscale | 263 | 25.05 | 3.41 | 0.00 | NA | NA | NA | 484 | 24.02 | 4.15 | 0.00 | NA | NA | NA |
PW1F1 | 262 | 2.93 | 1.05 | 0.38 | 1.91 | 37.79 | 0.62 | 484 | 2.49 | 1.15 | 0.00 | 6.20 | 21.49 | 0.61 |
PW1F2 | 263 | 3.86 | 0.47 | 0.00 | 0.38 | 89.35 | 0.35 | 484 | 3.78 | 0.65 | 0.00 | 0.83 | 86.16 | 0.35 |
PW1F3 | 263 | 3.65 | 0.77 | 0.00 | 0.76 | 78.33 | 0.48 | 482 | 3.58 | 0.85 | 0.41 | 1.24 | 75.93 | 0.46 |
PW1F4 | 263 | 3.27 | 0.99 | 0.00 | 1.52 | 55.13 | 0.44 | 477 | 3.25 | 1.07 | 1.45 | 3.14 | 56.39 | 0.45 |
PW1F5 | 198 | 3.74 | 0.64 | 24.71 | 0.00 | 82.32 | 0.36 | 330 | 3.34 | 1.10 | 31.82 | 3.64 | 67.27 | 0.25 |
PW1F6 | 262 | 3.76 | 0.57 | 0.38 | 0.00 | 82.06 | 0.29 | 483 | 3.66 | 0.73 | 0.21 | 0.62 | 78.67 | 0.52 |
PW1F7 | 262 | 3.86 | 0.46 | 0.38 | 0.38 | 89.69 | 0.30 | 482 | 3.84 | 0.55 | 0.41 | 0.62 | 90.46 | 0.27 |
Social well-being subscale | 263 | 22.44 | 4.49 | 0.00 | NA | NA | NA | 484 | 19.91 | 5.72 | 0.00 | NA | NA | NA |
SW1F1 | 263 | 3.16 | 0.97 | 0.00 | 1.52 | 47.53 | 0.52 | 484 | 2.75 | 1.11 | 0.00 | 4.13 | 29.34 | 0.56 |
SW1F2 | 263 | 3.37 | 0.89 | 0.00 | 1.52 | 57.41 | 0.52 | 483 | 2.91 | 1.13 | 0.21 | 2.90 | 40.58 | 0.52 |
SW1F3 | 263 | 3.22 | 0.90 | 0.00 | 0.76 | 47.91 | 0.44 | 484 | 2.88 | 1.12 | 0.00 | 3.31 | 37.19 | 0.51 |
SW1F4 | 261 | 3.51 | 0.74 | 0.76 | 0.38 | 63.22 | 0.48 | 483 | 3.04 | 0.97 | 0.21 | 1.24 | 38.92 | 0.49 |
SW1F5 | 262 | 3.31 | 0.89 | 0.38 | 0.76 | 53.44 | 0.56 | 484 | 2.83 | 1.19 | 0.00 | 5.99 | 37.40 | 0.48 |
SW1F6 | 263 | 3.62 | 0.77 | 0.00 | 1.14 | 74.90 | 0.42 | 477 | 3.39 | 0.96 | 1.45 | 2.52 | 62.89 | 0.36 |
SW1F7 | 204 | 1.92 | 1.34 | 22.43 | 21.57 | 14.71 | 0.38 | 365 | 1.82 | 1.45 | 24.59 | 28.49 | 16.71 | 0.33 |
Emotional well-being subscale | 263 | 18.44 | 4.62 | 0.00 | NA | NA | NA | 484 | 13.99 | 5.17 | 0.00 | NA | NA | NA |
EW1F1 | 263 | 3.10 | 0.97 | 0.00 | 1.52 | 41.44 | 0.63 | 484 | 2.57 | 1.14 | 0.00 | 6.40 | 22.93 | 0.62 |
EW1F2 | 263 | 3.07 | 1.00 | 0.00 | 3.80 | 39.54 | 0.44 | 484 | 2.51 | 1.02 | 0.00 | 4.96 | 16.12 | 0.56 |
EW1F3 | 262 | 3.74 | 0.78 | 0.38 | 2.67 | 86.64 | 0.40 | 484 | 3.29 | 1.09 | 0.00 | 3.51 | 61.36 | 0.54 |
EW1F4 | 263 | 3.27 | 0.98 | 0.00 | 0.76 | 55.13 | 0.59 | 483 | 2.76 | 1.21 | 0.21 | 6.83 | 32.92 | 0.51 |
EW1F5 | 262 | 2.74 | 1.23 | 0.38 | 7.63 | 33.21 | 0.50 | 484 | 1.46 | 1.35 | 0.00 | 35.12 | 9.09 | 0.38 |
EW1F6 | 263 | 2.54 | 1.23 | 0.00 | 9.51 | 24.71 | 0.50 | 484 | 1.40 | 1.36 | 0.00 | 35.54 | 9.71 | 0.39 |
Functional well-being subscale | 263 | 22.02 | 4.69 | 0.00 | NA | NA | NA | 484 | 18.56 | 5.71 | 0.00 | NA | NA | NA |
FW1F1 | 263 | 3.47 | 0.89 | 0.00 | 2.66 | 64.64 | 0.59 | 482 | 3.15 | 1.10 | 0.41 | 4.56 | 50.00 | 0.42 |
FW1F2 | 263 | 3.14 | 0.94 | 0.00 | 1.90 | 42.97 | 0.45 | 479 | 2.73 | 1.15 | 1.03 | 5.85 | 30.69 | 0.56 |
FW1F3 | 263 | 3.33 | 0.82 | 0.00 | 0.76 | 50.57 | 0.69 | 484 | 2.77 | 1.04 | 0.00 | 2.27 | 29.75 | 0.70 |
FW1F4 | 263 | 3.41 | 0.75 | 0.00 | 0.00 | 54.75 | 0.51 | 482 | 2.98 | 0.97 | 0.41 | 1.87 | 36.51 | 0.42 |
FW1F5 | 263 | 2.68 | 1.10 | 0.00 | 3.04 | 28.52 | 0.55 | 484 | 2.24 | 1.22 | 0.00 | 9.92 | 18.39 | 0.50 |
FW1F6 | 262 | 3.02 | 0.99 | 0.38 | 2.29 | 37.02 | 0.68 | 484 | 2.37 | 1.22 | 0.00 | 8.26 | 21.49 | 0.75 |
FW1F7 | 263 | 2.97 | 0.95 | 0.00 | 1.90 | 33.84 | 0.70 | 484 | 2.32 | 1.22 | 0.00 | 9.09 | 20.45 | 0.74 |
Caregiver FACT-G total | 263 | 87.95 | 12.86 | 0.00 | NA | NA | NA | 484 | 76.49 | 15.81 | 0.00 | NA | NA | NA |
Advanced cancer RCT
Factor structure: confirmatory factor analysis (CFA)
Prostate RCT
Advanced cancer RCT
Global model fit | Prostate cancer study | Advanced cancer study |
---|---|---|
χ2-test for discrepancy between sample and fitted covariance matrices | χ2 = 699, df = 318, p < 0.001 | χ2 = 999, df = 318, p < 0.001 |
Comparative fit index (CFI) | 0.83 | 0.82 |
Tucker Lewis index (TLI) | 0.81 | 0.80 |
Root mean square error of approximation (RMSEA) | 0.078 (90% CI 0.07–0.09) | 0.08 (90% CI 0.07–0.09) |
Weighted standardized root mean square residual index | 0.089 | 0.086 |
Internal consistency testing
Prostate RCT
Caregiver FACT-G subdomain | Prostate cancer study (N = 263) | Advanced cancer study (N = 484) | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
Cronbach's alpha | Inter-factor correlation | Cronbach's alpha | Inter-factor correlation | |||||||
PW | SW | EW | FW | PW | SW | EW | FW | |||
PW | 0.81 | 1.00 | 0.24*** | 0.33*** | 0.40*** | 0.83 | 1.00 | 0.26*** | 0.31*** | 0.48*** |
SW | 0.82 | 0.24*** | 1.00 | 0.40*** | 0.51*** | 0.84 | 0.26*** | 1.00 | 0.38*** | 0.56*** |
EW | 0.83 | 0.33*** | 0.40*** | 1.00 | 0.49** | 0.81 | 0.31*** | 0.38*** | 1.00 | 0.57*** |
FW | 0.86 | 0.40*** | 0.51*** | 0.49*** | 1.00 | 0.84 | 0.48*** | 0.55*** | 0.57*** | 1.00 |
Total score | 0.91 | 0.62*** | 0.74*** | 0.76*** | 0.83*** | 0.91 | 0.63*** | 0.76*** | 0.75*** | 0.87*** |
Advanced cancer RCT
Validity testing
Prostate RCT
Caregiver FACT-G validity | Prostate cancer study (N = 263) | Advanced cancer study (N = 484) | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
PW | SW | EW | FW | Total | PW | SW | EW | FW | Total | |||||
Convergent | ||||||||||||||
Self-efficacy scale | .32*** (.21,.43) | .51*** (.41,.59) | .54*** (.44,.62) | .51*** (.42,.60) | .63*** (.55,.69) | .25*** (.16,.33) | .46*** (.38,.53) | .48*** (.41,.55) | .49*** (.41,.55) | .55*** (.49,.61) | ||||
Active coping | − .22*** (− .33, − .10) | .15* (.03,.27) | − .23*** (− .34, − .11) | − .03 (− .15,.09) | − .10 (− .22,.02) | − .05 (− .14, .04) | .31*** (.23,.39) | − .05 (− .14, .04) | .08 (− .01, .16) | .10* (.01, .20) | ||||
Dyadic communication | .29*** (.17,.40) | .51*** (.41,.59) | .33*** (.22,.43) | .36*** (.25,.46) | .49*** (.39,.58) | 0.18*** (.09, .26) | 0.43*** (.35, .50) | 0.32*** (.24, .40) | 0.35*** (.27, .42) | 0.42*** (.34, .49) | ||||
Social support | 0.18* (.06, .30) | 0.51*** (.42, .60) | 0.22** (.10, .33 | 0.41*** (.31, .51) | 0.44*** (.33, .53) | 0.27*** (.19, .35) | 0.53*** (.47, .60) | 0.39*** (.31, .47) | 0.46*** (.38, .52) | 0.54*** (.47, .60) | ||||
Discriminant | ||||||||||||||
Appraisal of caregiving | − 0.37*** (− .47, − .26) | − 0.41*** (− .51, − .31) | − 0.60*** (− .67, − .52) | − 0.50*** (− .59, − .40) | − 0.63*** (− .69, − .55) | − .44*** (− .51, − .37) | − .49*** (− .56, − .42) | − .59*** (− .64, − .53) | − .60*** (− .65, − .54) | − .69*** (− .73, − .64) | ||||
Uncertainty scale | − .28*** (− .38, − .16) | − .38*** (− .47, − .27) | − .50*** (− .59, − .41) | − .47*** (− .56, − .39) | − .53*** (− .62, − .44) | − .37*** (− .44, − .29) | − .33*** (− .41, − .25) | − .51*** (− .57, − .44) | − .47*** (− .53, − .39) | − .53*** (− .60, − .47) | ||||
Hopelessness scale | − .26*** (− .37, − .15) | − .25*** (− .36, − .13) | − .42*** (− .52, − .32) | − .41*** (− .51, − .31) | − .45*** (− .54, − .34) | − .37*** (− .45, − .29) | − .42*** (− .49, − .35) | − .59*** (− .65, -.53) | − .49*** (− .56, − .42) | − .60*** (− .65, − .54) | ||||
Avoidant coping | − .41*** (− .50, − .30) | − .32*** (− .42, − .21) | − .58*** (− .65, − .49) | − .44*** (− .53, − .33) | − .58*** (− .65, − .49) | − .38*** (− .45, − .30) | − .26*** (− .34, − .18) | − .55*** (− .61, − .49) | − .47*** (− .54, − .40) | − .54*** (− .60, − .47) | ||||
Predictive | ||||||||||||||
SF-12 mental summary score | .40*** (.29, .50) | .34*** (.23, .45) | .40*** (.29, .50) | .48*** (.38, .57) | .54*** (.44, .62) | NA | ||||||||
SF-12 physical summary score | .37*** (.25, .47) | − .05 (− .18, .08) | .15* (.02, .27) | .23** (.11, .35) | .23** (.10, .34) | |||||||||
Depression CESD | NA | − .49*** (− .56, − .40) | − .46*** (− .53, − .37) | − .60*** (− .66, − .53) | − .61*** (− .67, − .54) | − .69*** (− .74, − .63) |