Background
Materials and methods
Study participants
Data sources and measurements
CRN data
Questionnaire data
Outcome variables
Socio-demographic variables
Treatment and late effects
Lifestyle variables
Statistical analyses
Results
Socio-demographic variables | |
Gender, n (%) | |
Female | 704 (74) |
Male | 243 (26) |
Age at survey (years) (mean (SD)/median (range)) | 49 (7.6)/48 (27–65) |
Age categories, n (%) | |
< 50 years | 558 (59) |
≥ 50 years | 389 (41) |
Marital status, n (%) | |
Living as a couple | 752 (80) |
Not living as a couple | 190 (20) |
Education, n (%) | |
High level (college/university) | 557 (59) |
Low level (≤ high school) | 382 (41) |
Work situation, n (%) | |
Within work force | 786 (84) |
Not within work force | 153 (16) |
Socio-economic statusa, n (%) | |
High | 770 (82) |
Low | 169 (18) |
Cancer-related variables and late effects | |
Age at diagnosis (years) (mean (SD)/median (range)) | 33 (5.4)/35 (19–39) |
Years since diagnosis (mean (SD)/median (range)) | 15 (6.7)/14 (5–30) |
Diagnoses, n (%) | |
Breast cancer | 399 (42) |
Colorectal cancer | 105 (11) |
Non-Hodgkin lymphoma | 156 (17) |
Leukemia | 95 (10) |
Malignant melanoma | 192 (20) |
Treatment modality, n (%) | |
Minimal surgery | 192 (20) |
Surgery and/or radiotherapy only | 143 (15) |
Systemic treatment only | 133 (14) |
Systemic treatment combined with surgery and/or radiotherapy | 479 (51) |
Number of late effectsb | |
0 | 360 (38) |
1–2 | 241 (26) |
3–4 | 174 (19) |
> 5 | 164 (18) |
Chronic fatigue, n (%) | |
No | 694 (74) |
Yes | 241 (26) |
HADS-Ac score (mean (SD)/median (range)) | 4.9 (3.8)/4 (0–21) |
PHQ-9d score (total) (mean (SD)/median (range)) | 5.6 (4.9)/4 (0–27) |
Lifestyle variables, n (%) | |
Inactivee | |
No | 506 (55) |
Yes | 413 (45) |
Obese (BMI ≥ 30) (kg/m2) | |
No | 775 (83) |
Yes | 154 (17) |
Current daily smoker | |
No | 831 (88) |
Yes | 113 (12) |
Information needs
Characteristics of YACSs with information needs
Lifestyle
Physical activity/exercise advice (n = 823) | Univariate analyses | Multivariable analyses | |||||||
---|---|---|---|---|---|---|---|---|---|
Variables | Yes (n = 373) | No, need (n = 450) | OR | 95% CI | P value | aOR | 95% CI | P value | |
Sex, n (%) | |||||||||
Female | 275 (45) | 338 (55) | 1.00 | ||||||
Male | 98 (47) | 112 (53) | 1.08 | 0.79–1.47 | 0.650 | ||||
Age at survey 2 categories, n (%) | |||||||||
≥ 50 | 132 (39) | 207 (61) | 1.00 | 1.0 | |||||
< 50 | 241 (50) | 243 (50) | 1.56 | 1.17–2.06 | 0.002 | 1.20 | .79–1.81 | .390 | |
Socio-economic statusa, n (%) | |||||||||
High | 291 (44) | 377 (56) | 1.00 | 1.0 | |||||
Low | 80 (54) | 69 (46) | 1.50 | 1.05–2.15 | 0.025 | 0.96 | 0.65–1.53 | 0.983 | |
Cancer-related variables and late effects | |||||||||
Years since diagnosis | |||||||||
5–10 years | 145 (54) | 126 (46) | 1.00 | 1.00 | |||||
11–20 years | 154 (43) | 203 (57) | 0.66 | 0.48–0.91 | 0.010 | 0.77 | 0.51–1.16 | .215 | |
21–30 years | 74 (38) | 121 (62) | 0.53 | 0.37–0.77 | 0.001 | 0.76 | 0.44–1.32 | .333 | |
Diagnoses, n (%) | |||||||||
Malignant melanoma | 52 (30) | 123 (70) | 1.00 | ||||||
Breast cancer | 172 (50) | 172 (50) | 2.37 | 1.61–3.48 | < .001 | ||||
Colorectal cancer | 43 (47) | 49 (53) | 2.08 | 1.23–3.50 | 0.006 | ||||
Non-Hodgkin lymphoma | 66 (50) | 65 (50) | 2.40 | 1.50–3.85 | < .001 | ||||
Leukemia | 40 (49) | 41 (51) | 2.31 | 1.34–3.97 | 0.003 | ||||
Treatment modality, n (%) | |||||||||
Minimal surgery | 52 (30) | 123 (70) | 1.0 | 1.0 | |||||
Surgery and/or radiotherapy | 50 (40) | 76 (60) | 1.56 | 0.96–2.52 | 0.072 | 1.74 | 0.99–3.05 | 0.056 | |
Systemic treatment only | 54 (48) | 59 (52) | 2.17 | 1.33–3.54 | 0.002 | 1.81 | 0.99–3.30 | 0.053 | |
Systemic treatment with surgery and/or radiotherapy | 217 (53) | 192 (47) | 2.67 | 1.83–3.90 | < .001 | 2.18 | 1.29–3.68 | 0.004 | |
Number of late effectsb, n (%) | |||||||||
0 | 111 (34) | 217 (66) | 1.0 | 1.0 | |||||
1–2 | 97 (46) | 116 (55) | 1.64 | 1.15–2.33 | 0.006 | 1.03 | 0.66–1.61 | 0.885 | |
3–4 | 84 (58) | 60 (42) | 2.74 | 1.83–4.09 | < .001 | 1.55 | 0.94–2.55 | 0.086 | |
≥ 5 | 77 (58) | 55 (42) | 2.74 | 1.81–4.14 | < .001 | 1.23 | 0.71–2.11 | 0.464 | |
Chronic fatigue, n (%) | |||||||||
No | 235 (38) | 381 (62) | 1.0 | 1.0 | |||||
Yes | 136 (68) | 63 (32) | 3.5 | 2.49–4.92 | < .001 | 2.14 | 1.45–3.17 | < .001 | |
HADS-Ac score, mean (SD) | 5.8 (4.0) | 3.9 (3.4) | 1.15 | 1.10–1.19 | < .001 | 1.10 | 1.06–1.16 | < .001 | |
PHQ-9d score, mean (SD) | 7.2 (5.3) | 4.1 (4.0) | 1.16 | 1.12–1.20 | < .001 | ||||
Lifestyle variables, n (%) | |||||||||
Inactivee | |||||||||
No | 174 (40) | 264 (60) | 1.0 | 1.0 | |||||
Yes | 190 (52) | 173 (48) | 1.67 | 1.26–2.21 | < .001 | 1.59 | 1.16–2.18 | .004 | |
BMI ≥ 30 kg/m2 | |||||||||
No | 283 (42) | 392 (58) | 1.0 | 1.0 | |||||
Yes | 78 (59) | 54 (41) | 2.00 | 1.37–2.92 | < .001 | 1.86 | 1.22–2.84 | .004 |
Dietary advice (n = 843) | Univariate analyses | Multivariable analyses | |||||||
---|---|---|---|---|---|---|---|---|---|
Variables | Yes (n = 414) | No, need (n = 429) | OR | 95% CI | P value | aOR | 95% CI | P value | |
Sex, n (%) | |||||||||
Female | 300 (48) | 330 (52) | 1.00 | ||||||
Male | 114 (54) | 99 (47) | 1.27 | 0.93–1.73 | 0.137 | ||||
Age at survey 2 categories, n (%) | |||||||||
≥ 50 | 146 (43) | 197 (57) | 1.00 | 1.0 | |||||
< 50 | 268 (54) | 232 (46) | 1.56 | 1.18–2.06 | 0.002 | 1.20 | .81–1.79 | ||
Socio-economic statusa, n (%) | |||||||||
High | 325 (48) | 358 (52) | 1.00 | ||||||
Low | 84 (55) | 68 (45) | 1.36 | 0.96–1.94 | 0.087 | ||||
Cancer-related variables and late effects | |||||||||
Years since diagnosis | |||||||||
5–10 years | 161 (58) | 118 (42) | 1.00 | 1.00 | |||||
11–20 years | 169 (46) | 199 (54) | 0.62 | 0.46–0.85 | 0.003 | 0.73 | 0.49–1.09 | 0.126 | |
21–30 years | 84 (43) | 112 (57) | 0.55 | 0.38–0.80 | 0.001 | 0.77 | 0.45–1.30 | 0.328 | |
Diagnoses, n (%) | |||||||||
Malignant melanoma | 64 (36) | 115 (64) | 1.00 | ||||||
Breast cancer | 183 (52) | 168 (48) | 1.96 | 1.35–2.84 | < .001 | ||||
Colorectal cancer | 51 (55) | 41 (45) | 2.24 | 1.34–3.73 | 0.002 | ||||
Non-Hodgkin lymphoma | 70 (52) | 65 (48) | 1.94 | 1.23–3.05 | 0.004 | ||||
Leukemia | 46 (54) | 40 (46) | 2.07 | 1.23–3.48 | 0.006 | ||||
Treatment modality, n (%) | |||||||||
Minimal surgery | 64 (36) | 115 (64) | 1.0 | 1.0 | |||||
Surgery and/or radiotherapy | 55 (44) | 69 (56) | 1.43 | 0.90–2.29 | 0.132 | 1.73 | 1.0–2.97 | 0.049 | |
Systemic treatment only | 62 (52) | 57 (48) | 1.95 | 1.22–3.13 | 0.005 | 1.84 | 1.04–3.27 | 0.036 | |
Systemic treatment with surgery and/or radiotherapy | 233 (55) | 188 (45) | 2.23 | 1.55–3.20 | < .001 | 1.94 | 1.18–3.20 | 0.009 | |
Number of late effectsb, n (%) | |||||||||
0 | 130 (40) | 196 (60) | 1.0 | 1.0 | |||||
1–2 | 105 (48) | 114 (52) | 1.39 | 0.98–1.96 | 0.063 | 0.87 | 0.56–1.33 | 0.508 | |
3–4 | 84 (56) | 66 (44) | 1.92 | 1.30–2.84 | 0.001 | 1.11 | 0.68–1.81 | 0.669 | |
≥ 5 | 89 (64) | 51 (36) | 2.63 | 1.75–3.96 | < .001 | 1.20 | 0.71–2.03 | 0.502 | |
Chronic fatigue | |||||||||
No | 264 (42) | 361 (58) | 1.0 | 1.0 | |||||
Yes | 145 (70) | 62 (30) | 3.20 | 2.28–4.48 | < .001 | 2.09 | 1.42–3.08 | < .001 | |
HADS-Ac score | 5.7 (3.9) | 3.9 (3.5) | 1.14 | 1.10–1.18 | < .001 | 1.10 | 1.05–1.15 | < .001 | |
PHQ-9d score | 7.0 (5.2) | 4.1 (4.1) | 1.14 | 1.11–1.18 | < .001 | ||||
Lifestyle variables, n (%) | |||||||||
Inactivee | |||||||||
No | 202 (45) | 249 (55) | 1.0 | 1.0 | |||||
Yes | 203 (55) | 167 (45) | 1.50 | 1.14–1.98 | 0.004 | 1.41 | 1.04–1.92 | .027 | |
BMI ≥ 30 kg/m2 | |||||||||
No | 321 (46) | 372 (54) | 1.0 | 1.0 | |||||
Yes | 82 (61) | 52 (39) | 1.83 | 1.25–2.67 | 0.002 | 1.69 | 1.11–2.57 | .014 |
Rehabilitation
Information needs of available rehabilitation services (n = 862) | Univariate analyses | Multivariable analyses | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
Variables | Yes (n = 437) | No, need (n = 425) | OR | 95% CI | P value | aOR | 95% CI | P value | ||
Sex, n (%) | ||||||||||
Female | 325 (51) | 312 (49) | 1.0 | |||||||
Male | 112 (50) | 113 (50) | 0.95 | 0.70–1.29 | 0.749 | |||||
Age at survey 2 categories, n (%) | 1.0 | |||||||||
≥ 50 | 157 (45) | 194 (55) | 1.0 | 1.05 | .68–1.61 | .822 | ||||
< 50 | 280 (55) | 231 (45) | 1.50 | 1.14–1.97 | 0.004 | |||||
Socio-economic statusa, n (%) | ||||||||||
High | 338 (48) | 363 (52) | 1.0 | 1.0 | ||||||
Low | 98 (63) | 57 (37) | 1.85 | 1.29–2.64 | 0.001 | 1.35 | 0.85–2.14 | 0.209 | ||
Cancer-related variables and late effects | ||||||||||
Years since diagnosis | ||||||||||
5–10 years | 166 (58) | 121 (42) | 1.00 | 1.00 | ||||||
11–20 years | 187 (50) | 184 (50) | 0.62 | 0.46–0.85 | 0.003 | 0.96 | 0.63–1.46 | 0.842 | ||
21–30 years | 84 (41) | 120 (59) | 0.55 | 0.38–0.80 | 0.001 | 0.73 | 0.41–1.29 | 0.280 | ||
Diagnoses, n (%) | ||||||||||
Malignant melanoma | 41 (23) | 140 (77) | 1.00 | |||||||
Breast cancer | 213 (61) | 137 (39) | 5.31 | 3.53–7.99 | < .001 | |||||
Colorectal cancer | 52 (52) | 49 (49) | 3.62 | 2.15–6.11 | < .001 | |||||
Non-Hodgkin lymphoma | 86 (59) | 60 (41) | 4.89 | 3.03–7.91 | < .001 | |||||
Leukemia | 45 (54) | 39 (46) | 3.94 | 2.27–6.84 | < .001 | |||||
Treatment modality, n (%) | ||||||||||
Minimal surgery | 41 (23) | 140 (77) | 1.0 | 1.0 | ||||||
Surgery and/or radiotherapy | 57 (43) | 75 (57) | 2.60 | 1.59–4.24 | < .001 | 2.50 | 1.40–4.47 | 0.002 | ||
Systemic treatment only | 69 (57) | 52 (43) | 4.53 | 2.75–7.48 | < .001 | 3.45 | 1.85–6.42 | < .001 | ||
Systemic treatment with surgery and/or radiotherapy | 270 (63) | 158 (37) | 5.84 | 3.91–8.70 | < .001 | 3.63 | 2.10–6.27 | < .001 | ||
Number of late effectsb, n (%) | ||||||||||
0 | 110 (32) | 231 (68) | 1.0 | 1.0 | ||||||
1–2 | 118 (53) | 104 (47) | 2.38 | 1.68–3.37 | < .001 | 1.35 | 0.87–2.09 | 0.186 | ||
3–4 | 93 (60) | 62 (40) | 3.15 | 2.13–4.67 | < .001 | 1.69 | 1.03–2.77 | 0.037 | ||
≥ 5 | 113 (81) | 26 (19) | 9.13 | 5.63–14.79 | < .001 | 3.85 | 2.12–6.97 | < .001 | ||
Chronic fatigue | ||||||||||
No | 265 (42) | 370 (58) | 1.0 | 1.0 | ||||||
Yes | 167 (77) | 51 (23) | 4.57 | 3.22–6.49 | < .001 | 2.33 | 1.53–3.53 | < .001 | ||
HADS-Ac score, mean (SD) | 5.9 (4.1) | 3.7 (3.1) | 1.18 | 1.14–1.23 | < .001 | 1.15 | 1.09–1.20 | < .001 | ||
PHQ-9 scored, mean (SD) | 7.5 (5.2) | 3.5 (3.4) | 1.25 | 1.20–1.30 | < .001 | |||||
Lifestyle variables, n (%) | ||||||||||
Inactivee | ||||||||||
No | 209 (46) | 243 (54) | 1.0 | 1.0 | ||||||
Yes | 216 (56) | 170 (44) | 1.48 | 1.12–1.94 | 0.005 | 1.38 | .99–1.90 | 0.055 | ||
Obese (BMI ≥ 30 kg/m2) | ||||||||||
No | 347 (49) | 363 (51) | 1.0 | 1.0 | ||||||
Yes | 82 (59) | 56 (41) | 1.53 | 1.06–2.22 | 0.024 | 1.58 | 1.01–2.46 | .045 |