Background
Methods and results
Phase I—Exploratory Factor Analysis and measure validation
Phase I data (N = 1436) | Phase II data (N = 1167) | ||||
---|---|---|---|---|---|
M/n | SD/% | M/n | SD/% | ||
Age | 58.4 (n = 1309) | 11.1 | 58.4 (n = 1104) | 12.2 | |
Sex | Female | 1035 | 72% | 791 | 69% |
Male | 401 | 28% | 357 | 31% | |
Race | White | 1291 | 90% | 964 | 83% |
African American | 64 | 4% | 89 | 8% | |
Asian | 18 | 1% | 13 | 1% | |
American Indian or Alaskan Native | 5 | < 1% | 4 | < 1% | |
Native Hawaiian or Pacific Islander | 4 | < 1% | 1 | < 1% | |
Multiple races | 25 | 2% | 22 | 2% | |
Hispanic or Latino/a | 40 | 3% | 68 | 6% | |
Education | No college | 196 | 14% | 210 | 18% |
Some college | 293 | 20% | 279 | 24% | |
College degree | 534 | 37% | 391 | 34% | |
Graduate or professional degree | 402 | 28% | 255 | 22% | |
Annual income | < $20 K | 108 | 8% | 156 | 34% |
$20–39 K | 207 | 14% | 168 | 14% | |
$40–59 K | 181 | 13% | 143 | 12% | |
$60–79 K | 145 | 10% | 119 | 10% | |
$80–99 K | 136 | 9% | 95 | 8% | |
$100 K+ | 300 | 21% | 199 | 17% | |
Prefer not to share | 283 | 20% | 242 | 21% | |
Employment | Full-time | 450 | 31% | 342 | 29% |
Part-time | 138 | 10% | 97 | 8% | |
Retired | 447 | 31% | 350 | 30% | |
Disability | 256 | 18% | 243 | 21% | |
Unemployed | 110 | 8% | 91 | 8% | |
Cancer diagnosis (most recent) | Breast | 504 | 35% | 365 | 31% |
Hematologic | 493 | 34% | 129 | 11% | |
Lung | 65 | 5% | 103 | 9% | |
Prostate | 54 | 4% | 173 | 15% | |
Ovarian | 50 | 3% | 45 | 4% | |
Colorectal | 44 | 3% | 60 | 5% | |
Melanoma | 34 | 2% | 25 | 2% | |
Head and neck | 20 | 1% | 36 | 3% | |
Endometrial | 18 | 1% | 25 | 2% | |
Sarcoma | 11 | 1% | 17 | 2% | |
Stomach | 8 | 1% | 17 | 2% | |
Other | 277 | 19% | 347 | 30% | |
Years since diagnosis | 4.6 (n = 1430) | 5.3 | 4.4 (n = 1059) | 6.1 | |
Stage | 0 | 93 | 6% | 60 | 5% |
I | 295 | 21% | 201 | 19% | |
II | 319 | 22% | 220 | 19% | |
III | 319 | 22% | 207 | 18% | |
IV | 194 | 14% | 167 | 14% | |
Other | 45 | 3% | 35 | 3% | |
Do not know | 154 | 11% | 159 | 14% | |
Treatment history | Current chemotherapy | 301 | 21% | 278 | 24% |
Current radiation therapy | 62 | 4% | 202 | 17% | |
Current hormonal therapy | 217 | 15% | 213 | 18% | |
Ever chemotherapy | 1029 | 72% | 696 | 60% | |
Ever radiation therapy | 629 | 44% | 522 | 45% | |
Ever hormonal therapy | 309 | 22% | 285 | 24% | |
Past surgery | 878 | 61% | 771 | 66% |
Measures
Results
Clinical description of the sample
Item | Mean/SD | % ≥ 3 | % ≥ 2 | Factor 1 | Factor 2 | Factor 3 | Factor 4 | Factor 5 | Communalities |
---|---|---|---|---|---|---|---|---|---|
Factor 1: Emotional well-being | |||||||||
Feeling nervous or afraid | 0.93/1.06 | 10.4 | 24.7 | .82 | − .05 | .08 | − .06 | .11 | .71 |
Feeling sad or depressed | 1.08/1.15 | 12.7 | 30.6 | .77 | .10 | − .02 | .06 | − .06 | .71 |
Worrying about the future and what lies ahead | 1.63/1.26 | 24.7 | 47.6 | .77 | .02 | .08 | − .03 | .04 | .67 |
Feeling lonely or isolated | 0.95/1.20 | 13.5 | 26.9 | .71 | .06 | − .03 | .17 | − .07 | .68 |
Finding meaning and purpose in life | 0.97/1.21 | 13.3 | 28.3 | .56 | .00 | .06 | .23 | .03 | .58 |
Worrying about family, children, and/or friends | 1.21/1.19 | 15.7 | 36.1 | .43 | .13 | .09 | .06 | .15 | .46 |
Health insurance or money worries | 1.46/1.41 | 25.5 | 42.1 | .39 | .18 | .04 | .07 | .08 | .37 |
Feeling irritable | 1.10/1.09 | 11.7 | 33.6 | .34 | .06 | .17 | .20 | .11 | .46 |
Factor 2: Symptom burden and impact | |||||||||
Pain and/or physical discomfort | 1.21/1.18 | 15.5 | 35.6 | .04 | .77 | − .03 | − .01 | .04 | .62 |
Moving around (walking, climbing stairs, lifting, etc.) | 1.28/1.22 | 16.9 | 39.8 | − .16 | .74 | .14 | .01 | .08 | .59 |
Feeling too tired to do the things that you need or want to do | 1.55/1.28 | 25.2 | 46.9 | .16 | .69 | .09 | .06 | − .10 | .72 |
Managing side effects of treatment (nausea, swelling, etc.) | 0.97/1.18 | 13.5 | 28.2 | .15 | .55 | .00 | − .01 | .15 | .50 |
Changes or disruptions in work, school, or home life | 1.21/1.27 | 17.2 | 37.0 | .25 | .45 | .01 | .15 | .04 | .56 |
Thinking clearly (e.g., “chemo brain,” “brain fog”) | 1.32/1.29 | 20.3 | 40.2 | .15 | .39 | .10 | .06 | .07 | .38 |
Sleep problems | 1.37/1.18 | 18.7 | 41.0 | .25 | .30 | .07 | .10 | .02 | .37 |
Transportation to treatment and appointments | 0.36/0.82 | 3.6 | 9.7 | .16 | .30 | − .07 | .07 | .27 | .33 |
Factor 3: Body image and healthy lifestyle | |||||||||
Exercising and being physically active | 1.59/1.26 | 26.0 | 50.0 | − .06 | .28 | .61 | .09 | − .02 | .65 |
Recent weight change (gain or loss) | 1.03/1.23 | 13.8 | 30.1 | .15 | .04 | .60 | − .01 | .03 | .50 |
Body image and feelings about how you look | 1.26/1.24 | 17.0 | 38.0 | .27 | .01 | .53 | .06 | − .04 | .53 |
Eating and nutrition | 1.74/1.31 | 30.2 | 57.8 | .01 | − .11 | .49 | .31 | .06 | .37 |
Factor 4: Health care team communication | |||||||||
Communicating with your doctor | 0.73/1.16 | 11.2 | 21.3 | .01 | .19 | .04 | .48 | .15 | .45 |
Making a treatment decision | 0.91/1.17 | 12.1 | 26.9 | .36 | .15 | − .02 | .43 | .00 | .53 |
Factor 5: Relationships and intimacy | |||||||||
Problems in your relationship with your spouse/partner | 0.71/1.12 | 10.0 | 19.5 | .00 | − .03 | − .01 | .03 | .82 | .64 |
Intimacy, sexual function and/or fertility | 1.09/1.27 | 16.5 | 33.5 | .04 | .05 | .12 | − .03 | .54 | .43 |
Psychometric analysis of CSS-25
No. of items | Mean/SD | Inter-correlations | Internal consistency reliability (α) | |||||
---|---|---|---|---|---|---|---|---|
F1 | F2 | F3 | F4 | F5 | ||||
Total distress score (CSS-25) | 25 | 27.9/19.2 | .92 | .90 | .79 | .70 | .64 | .94 |
F1. Emotional well-being | 8 | 1.17/0.93 | – | .73 | .63 | .60 | .57 | .90 |
F2. Symptom burden and impact | 8 | 1.16/0.86 | – | .64 | .61 | .49 | .87 | |
F3. Body image and healthy lifestyle | 4 | 1.41/0.97 | – | .47 | .45 | .77 | ||
F4. Health care team communication | 2 | 0.82/1.00 | – | .37 | .63 | |||
F5. Relationships and intimacy | 2 | 0.90/1.05 | – | .68 |
CSS risk score | PROMIS–29 comparison measure | AUC | Cutoff | Sensitivity | Specificity |
---|---|---|---|---|---|
Depression risk scale | Depression scale, T ≥ 60 | .923 | 2 | 97.0 | 63.2 |
3 | 91.4 | 79.5 | |||
4 | 79.4 | 89.3 | |||
Anxiety risk scale | Anxiety scale, T ≥ 62 | .903 | 2 | 98.0 | 48.2 |
3 | 91.8 | 70.9 | |||
4 | 81.3 | 85.2 |
Cronbach’s alpha | Mean/SD | PROMIS scales | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
Depression | Anxiety | Social function | Physical function | Fatigue | Sleep disturbance | Pain interference | General health | |||
Pearson correlations | ||||||||||
Total distress score (CSS-25) | .94 | 27.9/19.1 | .70 | .69 | − .67 | − .52 | .67 | .49 | .58 | − .46 |
Depression risk score | .83 | 2.02/2.16 | .79 | .70 | − .52 | − .35 | .53 | .41 | .41 | − .38 |
Anxiety risk score | .83 | 2.55/2.15 | .69 | .74 | − .48 | − .32 | .49 | .37 | .38 | − .38 |
F1. Emotional well-being | .90 | 1.17/0.93 | .77 | .76 | − .56 | − .38 | .57 | .45 | .46 | − .41 |
F2. Symptom burden and impact | .87 | 1.16/0.86 | .58 | .58 | − .74 | − .64 | .72 | .52 | .69 | − .50 |
F3. Body image and healthy lifestyle | .77 | 1.41/0.97 | .44 | .44 | − .49 | − .38 | .49 | .35 | .40 | − .27 |
F4. Health care team communication | .63 | 0.82/1.00 | .42 | .45 | − .40 | − .31 | .38 | .23 | .36 | − .28 |
F5. Relationships and intimacy | .68 | 0.90/1.05 | .42 | .41 | − .39 | − .25 | .34 | .27 | .29 | − .27 |