Background
Methods
Study 1
Study design and sample size rationale
Ethical considerations
Inclusion and exclusion criteria
Procedure
Study 2
Study design and sample size rationale
Ethical considerations
Inclusion and exclusion criteria for the present analyses
Procedure
Statistical analyses
Results
Study 1
Cancer patients (N = 450) | |
---|---|
Age in years m (SD); med (IQR); min–max | 62.2 (12.3), 63.0 (54.0–71.0), 21–89 |
Sex no. (%) | |
Female | 209 (46.4) |
Male | 241 (53.6) |
Education no. (%) | |
Less than some post compulsory education | 176 (39.1) |
At least some post compulsory (~ upper secondary) education | 272 (60.4) |
Missing | 2 (0.4) |
Country no. (%) | |
Germany | 393 (87.3) |
Switzerland | 37 (8.2) |
Austria | 20 (4.4) |
Cancera no. (%) | |
Oral cavity and throat (C00–C14) | 32 (7.1) |
Digestive organs (C15–C26) | 93 (20.7) |
Respiratory and chest organs (C30–C39) | 50 (11.1) |
Bones and joint cartilage (C40–C41) | 2 (0.4) |
Malignant melanoma (C43) | 37 (8.2) |
Non-melanoma skin cancer (C44) | 26 (5.8) |
Skin cancer not defined (C43–C44) | 5 (1.1) |
Soft and mesothelial tissue (C45–C49) | 2 (0.4) |
Mammary gland (C50) | 45 (10.0) |
Female sex organs (C51–C58) | 29 (6.4) |
Male sex organs (C60–C63) | 41 (9.1) |
Urinary organs (C64–C68) | 29 (6.4) |
Eye, brain, and central nervous system (C69–C72) | 4 (0.9) |
Endocrine glands (C73–C75) | 3 (0.7) |
Cancer of unknown primary syndrome (C76–C80) | 9 (2.0) |
Blood and lymph gland cancer (C81–C96) | 36 (8.0) |
Pituitary adenoma (D35) | 1 (0.2) |
More than one diagnosis | 5 (1.1) |
Unknown | 1 (0.2) |
Time from initial cancer diagnosis to initial assessmentb in months m (SD); med (IQR); min–max | 25.9 (52.6), 4.6 (1.6–21.1), 0–366 |
Cancer stage no. (%) | |
Local | 176 (39.1) |
Locally advanced | 123 (27.3) |
Metastatic | 133 (29.6) |
Missing/not applicablec | 18 (4.0) |
Hospitalization no. (%) | |
Inpatient | 291 (64.7) |
Outpatient | 159 (35.3) |
Treatment status no. (%) | |
Pretreatment | 13 (2.9) |
In treatment | 387 (86.0) |
Aftercare | 50 (11.1) |
Currently on treatment no. (%) | |
No | 63 (14.0) |
Yes | 387 (86.0) |
Systemic treatment | 152 (33.8) |
Local treatment | 168 (37.3) |
Systemic and local treatment | 67 (14.9) |
Previous treatment no. (%) | |
Unknown | 111 (24.7) |
No | 169 (37.7) |
Yes | 170 (37.8) |
Systemic treatment | 23 (5.1) |
Local treatment | 99 (22.0) |
Systemic and local treatment | 48 (10.7) |
Comorbidity no. (%) | |
No | 97 (21.6) |
Yes at least one additional disease | 353 (78.4) |
Multiple answers possible (sum > 100%) | |
Injuries | 43 (9.6) |
Diseases of the musculoskeletal system | 103 (22.9) |
Cardiovascular diseases | 192 (42.7) |
Respiratory diseases | 79 (17.6) |
Mental impairment | 47 (10.4) |
Neurological and sensory diseases | 69 (15.3) |
Diseases of the digestive system | 84 (18.7) |
Diseases of the urogenital tract | 73 (16.2) |
Skin diseases | 50 (11.1) |
Metabolic and hormonal disorders | 129 (28.7) |
Blood disorder | 17 (3.8) |
Congenital diseases | 11 (2.4) |
Other | 6 (1.3) |
Cancer patients between-group comparisons N = 450a | Cancer patients within-group comparisons N = 229b | German population between-group comparisons N = 2033 | ||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
mäßig version (n = 226) | ziemlich version (n = 224) | mäßig version (n = 229) | ziemlich version (n = 229) | mäßig version (n = 1006) | ziemlich version (n = 1027) | |||||||||||
m | sd | m | sd | p | m | sd | m | sd | p | m | sd | m | sd | p | ||
PF | 70.5 | 26.5 | 69.5 | 25.0 | 0.674 | 73.3 | 25.3 | 77.3 | 21.5 | < 0.001 | 82.0 | 21.5 | 84.2 | 19.7 | 0.019 | |
RF | 62.0 | 35.1 | 62.8 | 34.5 | 0.813 | 64.5 | 31.6 | 68.4 | 30.3 | 0.007 | 80.3 | 27.4 | 82.4 | 25.2 | 0.067 | |
EF | 61.0 | 27.5 | 67.4 | 23.6 | 0.008 | 68.9 | 24.7 | 71.6 | 22.5 | 0.008 | 75.1 | 24.2 | 76.1 | 23.0 | 0.318 | |
CF | 76.5 | 26.3 | 80.7 | 22.8 | 0.072 | 81.9 | 23.7 | 83.1 | 20.3 | 0.194 | 85.4 | 21.1 | 86.6 | 18.9 | 0.163 | |
SF | 62.5 | 33.7 | 65.9 | 30.8 | 0.257 | 67.8 | 31.4 | 70.1 | 29.1 | 0.111 | 85.1 | 25.5 | 86.7 | 22.9 | 0.144 | |
FA | 44.4 | 29.7 | 41.8 | 29.3 | 0.356 | 36.9 | 28.1 | 34.8 | 25.9 | 0.064 | 31.4 | 27.7 | 29.1 | 24.8 | 0.050 | |
NV | 12.2 | 20.0 | 11.9 | 21.0 | 0.892 | 7.2 | 14.1 | 7.5 | 16.1 | 0.772 | 5.2 | 15.7 | 4.5 | 14.0 | 0.284 | |
PA | 30.0 | 31.9 | 28.9 | 30.6 | 0.716 | 26.6 | 30.1 | 24.3 | 27.6 | 0.062 | 28.3 | 31.1 | 26.2 | 28.0 | 0.101 | |
DY | 28.0 | 32.5 | 27.2 | 31.7 | 0.806 | 25.9 | 32.4 | 23.7 | 28.9 | 0.108 | 19.6 | 27.8 | 17.8 | 25.3 | 0.109 | |
SL | 41.0 | 36.4 | 32.1 | 32.2 | 0.006 | 32.9 | 34.9 | 28.5 | 29.8 | 0.005 | 28.9 | 33.6 | 27.9 | 31.1 | 0.525 | |
AP | 30.1 | 35.3 | 26.1 | 34.6 | 0.230 | 23.0 | 33.1 | 20.0 | 28.2 | 0.058 | 9.3 | 22.2 | 7.9 | 19.3 | 0.123 | |
CO | 17.3 | 29.3 | 16.4 | 28.5 | 0.764 | 13.4 | 24.5 | 12.7 | 24.8 | 0.560 | 8.9 | 21.6 | 8.0 | 19.8 | 0.296 | |
DI | 18.0 | 29.3 | 15.8 | 25.9 | 0.410 | 13.1 | 24.4 | 12.7 | 22.5 | 0.746 | 9.7 | 22.2 | 8.0 | 19.3 | 0.067 | |
FI | 22.8 | 31.1 | 20.5 | 28.0 | 0.414 | 20.7 | 30.6 | 18.7 | 26.7 | 0.140 | 10.4 | 24.1 | 9.2 | 22.4 | 0.238 | |
Summary | 70.1 | 19.9 | 73.0 | 18.6 | 0.116 | 75.1 | 18.3 | 77.4 | 16.8 | < 0.001 | 82.0 | 17.7 | 83.6 | 15.9 | 0.038 |
Questionnaire version mäßig – ziemlich | Higher health burden (QoL < 50) mäßig – ziemlich | Lower health burden (QoL ≥ 50) mäßig – ziemlich | Paper− based assessment mäßig – ziemlich | Computer− based assessment mäßig – ziemlich | ||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Delta | 95% CI | p | Delta | 95% CI | p | Delta | 95% CI | p | Delta | 95% CI | p | Delta | 95% CI | p | ||||||
Cancer patients between− group comparisonsa | ||||||||||||||||||||
n | 450 | 144 | 306 | 236 | 214 | |||||||||||||||
PF | − 1.0 | − 5.5 | 3.5 | 0.663 | − 2.1 | − 9.5 | 5.3 | 0.585 | 0.1 | − 5.0 | 5.1 | 0.978 | 2.3 | − 3.7 | 8.3 | 0.450 | − 4.3 | − 10.5 | 2.0 | 0.179 |
RF | − 1.3 | − 7.4 | 4.8 | 0685 | 0.7 | − 9.4 | 10.8 | 0.894 | − 3.2 | − 10.1 | 3.7 | 0.363 | − 1.8 | − 10.0 | 6.3 | 0.660 | − 0.7 | − 9.2 | 7.9 | 0.687 |
EF | − 7.5 | − 12.1 | − 2.8 | 0.002 | − 8.8 | − 16.4 | − 1.1 | 0.024 | − 6.2 | − 11.4 | − 0.9 | 0.022 | − 6.6 | − 12.8 | − 0.4 | 0.038 | − 8.4 | − 14.8 | − 1.9 | 0.011 |
CF | − 5.2 | − 9.9 | − 0.6 | 0.028 | − 6.3 | − 14.0 | 1.4 | 0.107 | − 4.1 | − 9.4 | 1.1 | 0.123 | − 3.1 | − 9.4 | 3.1 | 0.324 | − 7.3 | − 13.8 | − 0.8 | 0.028 |
SF | − 4.9 | − 10.7 | 0.9 | 0.095 | − 7.4 | − 16.9 | 2.2 | 0.130 | − 2.5 | − 9.0 | 4.1 | 0.459 | − 5.5 | − 13.2 | 2.3 | 0.167 | − 4.4 | − 12.5 | 3.7 | 0.287 |
FA | 4.8 | − 0.3 | 9.9 | 0.063 | 7.4 | − 1.0 | 15.7 | 0.085 | 2.3 | − 3.5 | 8.0 | 0.435 | 4.6 | − 2.2 | 11.4 | 0.182 | 5.0 | − 2.1 | 12.1 | 0.165 |
NV | 1.1 | − 2.8 | 5.1 | 0.571 | 2.5 | − 4.0 | 9.0 | 0.444 | − 0.3 | − 4.7 | 4.2 | 0.908 | 0.1 | − 5.1 | 5.4 | 0.959 | 2.1 | − 3.4 | 7.6 | 0.446 |
PA | 2.6 | − 3.1 | 8.3 | 0.374 | 3.9 | − 5.5 | 13.4 | 0.414 | 1.2 | − 5.2 | 7.7 | 0.706 | 2.8 | − 4.9 | 10.4 | 0.477 | 2.4 | − 5.6 | 10.4 | 0.555 |
DY | 1.2 | − 4.9 | 7.3 | 0.700 | − 0.6 | − 10.7 | 9.4 | 0.901 | 3.0 | − 3.9 | 10.0 | 0.390 | − 3.2 | − 11.4 | 5.0 | 0.446 | 5.6 | − 3.0 | 14.1 | 0.200 |
SL | 9.9 | 3.3 | 16.5 | 0.004 | 10.4 | − 0.6 | 21.3 | 0.064 | 9.4 | 1.9 | 17.0 | 0.014 | 8.0 | − 0.8 | 16.9 | 0.076 | 11.7 | 2.5 | 21.0 | 0.013 |
AP | 7.4 | 1.0 | 13.7 | 0.024 | 13.1 | 2.5 | 23.7 | 0.015 | 1.6 | − 5.6 | 8.8 | 0.664 | 5.9 | − 2.7 | 14.5 | 0.177 | 8.8 | − 0.1 | 17.7 | 0.053 |
CO | 2.1 | − 3.5 | 7.8 | 0.463 | 3.8 | − 5.6 | 13.1 | 0.429 | 0.5 | − 5.9 | 6.8 | 0.888 | 0.2 | − 7.4 | 7.7 | 0.967 | 4.1 | − 3.8 | 11.9 | 0.312 |
DI | 5.3 | − 0.3 | 10.6 | 0.062 | 12.4 | 3.5 | 21.4 | 0.007 | − 2.1 | − 8.3 | 4.0 | 0.491 | 3.6 | − 3.7 | 10.8 | 0.332 | 6.7 | − 0.8 | 14.3 | 0.082 |
FI | 5.0 | − 0.7 | 10.7 | 0.086 | 12.4 | 3.0 | 21.9 | 0.010 | − 2.4 | − 8.9 | 4.0 | 0.458 | 3.5 | − 4.2 | 11.1 | 0.374 | 6.5 | − 1.4 | 14.5 | 0.108 |
Summary | − 4.5 | − 7.8 | − 1.3 | 0.006 | − 6.8 | − 12.2 | − 1.4 | 0.013 | − 2.3 | − 5.9 | 1.4 | 0.226 | − 3.1 | − 7.5 | 1.2 | 0.161 | − 5.9 | − 10.5 | − 1.4 | 0.010 |
Cancer patients within—group comparisonsb | ||||||||||||||||||||
n | 229 | 57 | 172 | 119 | 110 | |||||||||||||||
PF | − 4.5 | − 6.4 | − 2.6 | < 0.001 | − 5.4 | − 8.7 | − 2.2 | 0.001 | − 3.6 | − 5.4 | − 1.7 | < 0.001 | − 4.0 | − 6.4 | − 1.6 | 0.001 | − 5.0 | − 7.5 | − 2.4 | < 0.001 |
RF | − 4.8 | − 8.1 | − 1.4 | 0.005 | − 6.3 | − 12.1 | − 0.5 | 0.033 | − 3.2 | − 6.6 | 0.1 | 0.056 | − 4.5 | − 8.8 | − 0.3 | 0.038 | − 5.0 | − 9.5 | − 0.5 | 0.031 |
EF | − 2.5 | − 4.8 | − 0.3 | 0.026 | − 2.5 | − 6.4 | 1.4 | 0.209 | − 2.6 | − 4.8 | − 0.4 | 0.023 | − 2.6 | − 5.4 | 0.3 | 0.077 | − 2.5 | − 5.5 | 0.6 | 0.109 |
CF | − 1.5 | − 3.6 | 0.7 | 0.190 | − 1.9 | − 5.6 | 1.9 | 0.335 | − 1.0 | − 3.2 | 1.1 | 0.344 | − 0.9 | − 3.7 | 1.9 | 0.548 | − 2.1 | − 5.0 | 0.9 | 0.175 |
SF | − 4.1 | − 7.3 | − 0.9 | 0.012 | − 7.9 | − 13.5 | − 2.3 | 0.006 | − 0.4 | − 3.6 | 2.8 | 0.825 | − 4.4 | − 8.5 | − 0.2 | 0.038 | − 3.9 | − 8.3 | 0.5 | 0.081 |
FA | 3.4 | 0.9 | 6.0 | 0.009 | 6.1 | 1.6 | 10.6 | 0.008 | 0.8 | − 1.8 | 3.4 | 0.537 | 3.1 | − 0.2 | 6.4 | 0.064 | 3.8 | 0.3 | 7.3 | 0.036 |
NV | 0.4 | − 1.9 | 2.7 | 0.708 | 1.9 | − 2.1 | 5.9 | 0.356 | − 1.0 | − 3.3 | 1.3 | 0.392 | 1.0 | − 1.9 | 4.0 | 0.486 | − 0.2 | − 3.3 | 3.0 | 0.915 |
PA | 3.3 | 0.5 | 6.2 | 0.021 | 5.3 | 0.4 | 10.2 | 0.035 | 1.4 | − 1.4 | 4.2 | 0.335 | 1.6 | − 2.0 | 5.3 | 0.379 | 5.1 | 1.2 | 8.9 | 0.010 |
DY | 4.0 | 1.0 | 7.0 | 0.010 | 7.4 | 2.1 | 12.7 | 0.006 | 0.6 | − 2.4 | 3.7 | 0.691 | 1.0 | − 2.9 | 4.9 | 0.614 | 7.0 | 2.8 | 11.2 | 0.001 |
SL | 4.7 | 1.0 | 8.5 | 0.014 | 5.2 | − 1.3 | 11.8 | 0.118 | 4.3 | 0.5 | 8.1 | 0.026 | 3.6 | − 1.2 | 8.5 | 0.143 | 5.9 | 0.8 | 11.0 | 0.025 |
AP | 4.9 | 1.3 | 8.5 | 0.008 | 8.2 | 1.9 | 14.6 | 0.011 | 1.5 | − 2.1 | 5.2 | 0.403 | 2.3 | − 2.4 | 7.0 | 0.329 | 7.5 | 2.5 | 12.4 | 0.003 |
CO | 1.2 | − 1.6 | 4.1 | 0.403 | 2.0 | − 2.9 | 7.0 | 0.416 | 0.4 | − 2.5 | 3.2 | 0.794 | − 0.8 | − 4.4 | 2.9 | 0.674 | 3.2 | − 0.7 | 7.1 | 0.105 |
DI | 1.2 | − 1.9 | 4.3 | 0.444 | 2.9 | − 2.4 | 8.2 | 0.283 | − 0.5 | − 3.6 | 2.5 | 0.736 | 2.6 | − 1.4 | 6.5 | 0.197 | − 0.2 | − 4.4 | 4.0 | 0.924 |
FI | 3.2 | 0.0 | 6.3 | 0.049 | 5.3 | − 0.2 | 10.8 | 0.058 | 1.0 | − 2.1 | 4.2 | 0.517 | 2.2 | − 1.9 | 6.2 | 0.290 | 4.2 | − 0.1 | 8.5 | 0.058 |
Summary | − 3.1 | − 4.3 | − 1.9 | < 0.001 | − 4.8 | − 6.9 | − 2.8 | < 0.001 | − 1.4 | − 2.6 | − 0.2 | 0.022 | − 2.4 | − 3.9 | − 0.8 | 0.003 | − 3.9 | − 5.5 | − 2.3 | < 0.001 |
German population between—group comparisonsc | ||||||||||||||||||||
n | 2033 | 370 | 1663 | |||||||||||||||||
PF | − 3.8 | − 5.9 | − 1.8 | < 0.001 | − 5.6 | − 9.3 | − 2.0 | 0.003 | − 2.1 | − 3.8 | − 0.3 | 0.020 | ||||||||
RF | − 4.4 | − 6.9 | − 1.9 | 0.001 | − 6.8 | − 11.3 | − 2.3 | 0.003 | − 2.1 | − 4.2 | 0.1 | 0.056 | ||||||||
EF | − 2.0 | − 4.4 | 0.3 | 0.091 | − 2.5 | − 6.8 | 1.7 | 0.247 | − 1.5 | − 3.5 | 0.5 | 0.130 | ||||||||
CF | − 2.7 | − 4.8 | − 0.7 | 0.010 | − 4.4 | − 8.1 | − 0.6 | 0.024 | − 1.1 | − 2.9 | 0.7 | 0.218 | ||||||||
SF | − 3.9 | − 6.1 | − 1.7 | 0.001 | − 6.3 | − 10.3 | − 2.3 | 0.002 | − 1.5 | − 3.4 | 0.4 | 0.117 | ||||||||
FA | 4.3 | 1.8 | 6.8 | 0.001 | 6.3 | 1.7 | 10.8 | 0.007 | 2.4 | 0.3 | 4.5 | 0.027 | ||||||||
NV | 1.4 | − 0.2 | 3.0 | 0.089 | 2.2 | − 0.8 | 5.1 | 0.146 | 0.6 | − 0.8 | 2.0 | 0.367 | ||||||||
PA | 3.6 | 0.7 | 6.4 | 0.015 | 4.5 | − 0.7 | 9.7 | 0.093 | 2.7 | 0.2 | 5.1 | 0.033 | ||||||||
DY | 3.8 | 1.1 | 6.6 | 0.007 | 6.0 | 1.0 | 11.0 | 0.019 | 1.7 | − 0.7 | 4.0 | 0.162 | ||||||||
SL | 3.0 | − 0.3 | 6.3 | 0.074 | 5.2 | − 0.8 | 11.2 | 0.091 | 0.9 | − 2.0 | 3.7 | 0.546 | ||||||||
AP | 3.5 | 1.3 | 5.6 | 0.002 | 5.9 | 2.0 | 9.9 | 0.003 | 1.0 | − 0.9 | 2.8 | 0.310 | ||||||||
CO | 1.5 | − 0.7 | 3.8 | 0.187 | 1.9 | − 2.2 | 6.0 | 0.367 | 1.2 | − 0.8 | 3.1 | 0.235 | ||||||||
DI | 1.5 | − 0.8 | 3.8 | 0.187 | 0.9 | − 3.3 | 5.0 | 0.676 | 2.2 | 0.2 | 4.2 | 0.027 | ||||||||
FI | 3.3 | 0.9 | 5.7 | 0.007 | 5.6 | 1.3 | 9.9 | 0.011 | 1.0 | − 1.1 | 3.0 | 0.347 | ||||||||
Summary | − 3.1 | − 4.6 | − 1.5 | < 0.001 | − 4.5 | − 7.3 | − 1.7 | 0.002 | − 1.6 | − 2.9 | − 0.3 | 0.016 |
Study 2
German population (N = 2033) | |
---|---|
Age in years m (SD); med (IQR); min–max | 53.7 (15.0), 54.0 (42.5–66.0), 18–90 |
Sex no. (%) | |
Female | 1012 (49.8) |
Male | 1021 (50.2) |
Education no. (%) | |
Less than some post compulsory education | 237 (11.7) |
At least some post compulsory (~ upper secondary) education | 1773 (87.2) |
Missing | 23 (1.1) |
Country no. (%) | |
Germany | 2,033 (100) |
Health condition no. (%) | |
No disease | 715 (35.2) |
At least one disease | 1182 (58.1) |
Prefer not to answer/unclear answer | 136 (6.7) |
Multiple answers possible > 100% | |
Chronic pain | 551 (27.1) |
Heart disease | 168 (8.3) |
Cancer (excluding basal cell carcinoma) | 66 (3.2) |
Depression | 181 (8.9) |
Chronic obstructive pulmonary disease | 65 (3.2) |
Arthritis | 305 (15.0) |
Diabetes | 232 (11.4) |
Asthma | 115 (5.7) |
Anxiety disorder | 86 (4.2) |
Obesity | 175 (8.6) |
Drug/alcohol use disorder | 20 (1.0) |
Other | 343 (16.9) |
Choice of response options in the mäßig and in the ziemlich questionnaire versions (Studies 1 and 2)
Optimized questionnaire (ziemlich) | Total | ||||
---|---|---|---|---|---|
1 not at all | 2 a little | 3 quite a bit (ziemlich) | 4 very much | ||
Conventional questionnaire (mäßig) | |||||
1 not at all | |||||
n | 2628 | 447 | 59 | 10 | 3144 |
% | 83.6% | 14.2% | 1.9% | 0.3% | 100% |
2 a little | |||||
n | 433 | 950 | 177 | 22 | 1582 |
% | 27.4% | 60.1% | 11.2% | 1.4% | 100% |
3 quite a bit (mäßig) | |||||
n | 83 | 392 | 438 | 57 | 970 |
% | 8.6% | 40.4% | 45.2% | 5.9% | 100% |
4 very much | |||||
n | 15 | 58 | 178 | 202 | 453 |
% | 3.3% | 12.8% | 39.3% | 44.6% | 100% |
Total | |||||
n | 3159 | 1847 | 852 | 291 | 6149 |
% | 51.4% | 30.0% | 13.9% | 4.7% | 100% |