Introduction
Methods
Study population and recruitment
Operationalization of guideline adherence
Survey data
Dimension | Item | Operationalization |
---|---|---|
Patient-related factors | Frailty | Tilburg Frailty Indicator, dichotomized per instrument instructions (≥ 5) |
Need of care | “Pflegegrad” 1–5 according to German social code § 15 SGB XI and “No”, dichotomized to reflect existence of “Pflegegrad” | |
Depression diagnosed before cancer diagnosis | Dichotomous | |
Regular intake of four or more medications | Dichotomous | |
Independently mobile by access and ability to use car or public transport | Dichotomous | |
Social support | FSoZU social-support scale, continuous | |
Confidant available for advice on therapy decision | Dichotomous | |
Self-efficacy expectations | ASKU self-efficacy scale, continuous | |
Precedence of quality of life or prolongation of life in therapy decision | Answer options “both equally important”, “prolongation of life”, “quality of life” | |
“I have many expectations from life and wish that I can experience many more years” | 5-point Likert scale, “strongly disagree” to “strongly agree”; dichotomization reflects agreement to statement | |
“I have tasks in life and wish that I can fulfil them for a long time” | 5-point Likert scale, “strongly disagree” to “strongly agree”; dichotomization reflects agreement to statement | |
Decision-related factors | “All in all, how satisfied are you with how treatment decisions were made?” | 7-point Likert scale, “very dissatisfied” to “very satisfied”; dichotomized along 6 points |
“I was well-informed about my illness and treatment options.” | 5-point Likert scale, “strongly disagree” to “strongly agree”; dichotomization reflects agreement to statement | |
“I was well-included in treatment decisions.” | 5-point Likert scale, “strongly disagree” to “strongly agree”; dichotomization reflects agreement to statement | |
“Do you know medical guidelines or patient guidelines for treating breast cancer?” | Answer options “don’t know”, “know but didn’t read”, “read it”; dichotomization reflects reading | |
Psychological consultation offered | Dichotomous | |
Empathy | Dichotomous | |
Retrospective judgment of treatment decision | “I am sure that the therapies carried out were appropriate for my situation” | Dichotomous |
Statistical analysis
Results
50–69 years, N = 698 | 70 years and older, N = 452 | |
---|---|---|
Age at breast cancer diagnosis | ||
Median (IQR) | 60 (55, 65) | 77 (73, 80) |
Period between diagnosis and survey response (weeks) | ||
Median (IQR) | 78 (58, 101) | 78 (54, 103) |
UICC | ||
I | 408 (66%) | 208 (51%) |
II | 176 (28%) | 159 (39%) |
III | 23 (3.7%) | 32 (7.8%) |
IV | 15 (2.4%) | 12 (2.9%) |
Physical aspects and comorbidities | ||
Depression diagnosed prior to cancer diagnosis | ||
No | 449 (73%) | 354 (85%) |
Yes | 168 (27%) | 61 (15%) |
Regular intake of four or more medications | ||
No | 522 (75%) | 279 (62%) |
Yes | 175 (25%) | 169 (38%) |
Frailty (Tilburg Frailty Indicator) | ||
No | 390 (58%) | 225 (54%) |
Yes | 285 (42%) | 192 (46%) |
Need of care | ||
No | 672 (97%) | 393 (89%) |
Yes | 18 (3%) | 48 (11%) |
50–69 years (N = 477) | 70 years and older (N = 283) | |
---|---|---|
No deviation | 402 (84.3%) | 208 (73.5%) |
One deviation | 68 (14.3%) | 66 (23.3%) |
Two and more deviations | 7 (1.5%) | 9 (3.2%) |
50–69 years | 70 years and older | |||||||||
---|---|---|---|---|---|---|---|---|---|---|
Characteristic | N | Non-adherent | OR1 | 95% CI1 | P | N | Non-adherent | OR1 | 95% CI1 | P |
Age at diagnosis in years | 698 | 95 | 0.99 | 0.95, 1.03 | 0.620 | 452 | 111 | 1.06 | 1.01, 1.11 | 0.010 |
UICC | 0.275 | 0.396 | ||||||||
I | 408 | 67 | – | – | 208 | 55 | – | – | ||
II | 176 | 20 | 0.65 | 0.38, 1.11 | 159 | 45 | 1.10 | 0.69, 1.74 | ||
III | 23 | 2 | 0.48 | 0.11, 2.12 | 32 | 6 | 0.64 | 0.25, 1.64 | ||
IV | 15 | 1 | 0.36 | 0.05, 2.81 | 12 | 1 | 0.25 | 0.03, 2.00 | ||
Frailty | 0.383 | 0.800 | ||||||||
No | 390 | 57 | – | – | 225 | 55 | – | – | ||
Yes | 285 | 35 | 0.82 | 0.52, 1.28 | 192 | 49 | 1.06 | 0.68, 1.65 | ||
Depression | 0.930 | 0.049 | ||||||||
No | 449 | 60 | – | – | 354 | 80 | – | – | ||
Yes | 168 | 22 | 0.98 | 0.58, 1.65 | 61 | 21 | 1.80 | 1.00, 3.22 | ||
Medication | 0.637 | 0.911 | ||||||||
No | 522 | 73 | – | – | 279 | 69 | – | – | ||
Yes | 175 | 22 | 0.88 | 0.53, 1.47 | 169 | 41 | 0.97 | 0.62, 1.52 | ||
Need of care | 0.766 | 0.380 | ||||||||
No | 672 | 91 | – | – | 393 | 92 | – | – | ||
Yes | 18 | 2 | 0.80 | 0.18, 3.53 | 48 | 14 | 1.35 | 0.69, 2.62 | ||
Mobility | 0.048 | 0.525 | ||||||||
No | 16 | 5 | – | – | 35 | 7 | – | – | ||
Yes | 680 | 90 | 0.34 | 0.11, 0.99 | 411 | 102 | 1.32 | 0.56, 3.11 | ||
Social support | 692 | 91 | 0.97 | 0.71, 1.34 | 0.872 | 437 | 103 | 1.00 | 0.72, 1.37 | 0.982 |
Confidant available | 0.056 | 0.127 | ||||||||
No | 72 | 15 | – | – | 51 | 17 | – | – | ||
Yes | 619 | 78 | 0.55 | 0.30, 1.01 | 392 | 92 | 0.61 | 0.33, 1.15 | ||
Self-efficacy expectation | 698 | 95 | 1.02 | 0.82, 1.27 | 0.836 | 452 | 111 | 0.91 | 0.72, 1.14 | 0.399 |
Prolongation vs quality of life? | 0.093 | 0.939 | ||||||||
Both equally important | 557 | 70 | – | – | 335 | 76 | – | – | ||
Prolongation of life | 57 | 7 | 0.97 | 0.42, 2.23 | 12 | 3 | 1.14 | 0.30, 4.30 | ||
Quality of life | 73 | 16 | 1.95 | 1.06, 3.59 | 71 | 15 | 0.91 | 0.49, 1.70 | ||
Expectations from life | 0.313 | 0.512 | ||||||||
No | 55 | 5 | – | – | 92 | 25 | – | – | ||
Yes | 636 | 89 | 1.63 | 0.63, 4.19 | 352 | 84 | 0.84 | 0.50, 1.41 | ||
Tasks in life | 0.934 | 0.246 | ||||||||
No | 94 | 13 | – | – | 98 | 28 | – | – | ||
Yes | 592 | 80 | 0.97 | 0.52, 1.83 | 341 | 78 | 0.74 | 0.45, 1.23 | ||
Satisfied with decision-making | 0.127 | 0.006 | ||||||||
No | 197 | 33 | – | – | 120 | 40 | – | – | ||
Yes | 487 | 60 | 0.70 | 0.44, 1.11 | 320 | 66 | 0.52 | 0.33, 0.83 | ||
Knowledge of guidelines | 0.068 | 0.174 | ||||||||
Did not read | 351 | 56 | – | – | 253 | 67 | – | – | ||
Read it | 324 | 36 | 0.66 | 0.42, 1.03 | 178 | 37 | 0.73 | 0.46, 1.15 | ||
Psychological consultation offered | 0.080 | 0.162 | ||||||||
No | 220 | 37 | – | – | 239 | 65 | – | – | ||
Yes | 470 | 56 | 0.67 | 0.43, 1.05 | 205 | 44 | 0.73 | 0.47, 1.13 | ||
Informed about illness and therapy | 0.064 | 0.944 | ||||||||
No | 108 | 21 | – | – | 46 | 11 | – | – | ||
Yes | 582 | 74 | 0.60 | 0.35, 1.03 | 402 | 98 | 1.03 | 0.50, 2.10 | ||
Physicians were understanding | 0.642 | 0.307 | ||||||||
No | 364 | 52 | – | – | 237 | 63 | – | – | ||
Yes | 329 | 43 | 0.90 | 0.58, 1.39 | 214 | 48 | 0.80 | 0.52, 1.23 | ||
Included in decision processes | 0.844 | 0.240 | ||||||||
No | 206 | 29 | – | – | 105 | 30 | – | – | ||
Yes | 481 | 65 | 0.95 | 0.60, 1.53 | 340 | 78 | 0.74 | 0.45, 1.22 |
Characteristic | 50 to 69 years | 70 years and older | ||||
---|---|---|---|---|---|---|
OR1 | 95% CI1 | P | OR1 | 95% CI1 | P | |
Mobility | 0.39 | 0.12, 1.29 | 0.123 | |||
Confidant available | 0.86 | 0.42, 1.75 | 0.672 | |||
Prolongation vs quality of life? | ||||||
Both equally important | – | – | ||||
Prolongation of life | 0.78 | 0.30, 2.05 | 0.617 | |||
Quality of life | 2.08 | 1.11, 3.92 | 0.023 | |||
Knowledge of guidelines | 0.67 | 0.41, 1.08 | 0.097 | |||
Informed about illness and therapy | 0.77 | 0.43, 1.40 | 0.393 | |||
Psychological consultation offered | 0.78 | 0.48, 1.27 | 0.316 | |||
Age at diagnosis in years | 1.06 | 1.01, 1.11 | 0.021 | |||
Depression | 1.84 | 1.00, 3.40 | 0.050 | |||
Satisfied with decision-making | 0.56 | 0.34, 0.91 | 0.021 |