Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Setting and Population
2.2. Data Collection
2.2.1. Paper-Optional Group (N = 8291)
2.2.2. No Reminder Group (N = 1671)
2.2.3. Paper Included Group (N = 1334)
2.3. Measures
2.4. Statistical Analyses
3. Results
3.1. Representativeness Study Sample
3.2. Methods of Invitation
3.3. Reasons of Non-Participation
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Total Population-Based Population | Respondents | Non- Respondents | Excluded | P-Value (Non- Respondents vs. Respondents) | ||||||
---|---|---|---|---|---|---|---|---|---|---|
N = 17,098 | N = 4010 | N = 7286 | N = 5802 | |||||||
n | % | n | % | n | % | n | % | |||
Gender | Male | 6997 | 41 | 1549 | 39 | 3082 | 42 | 2366 | 41 | 0.0001 |
Female | 10,101 | 59 | 2461 | 61 | 4204 | 58 | 3436 | 59 | ||
Age (at diagnosis), (mean (sd)) | 31.5 (5.9) | 31.6 (5.9) | 31.4 (5.9) | 31.5 (5.8) | ||||||
18–24 years | 2672 | 16 | 613 | 15 | 1168 | 16 | 891 | 15 | 0.1354 | |
25–34 years | 7782 | 46 | 1786 | 45 | 3328 | 46 | 2668 | 46 | ||
35–39 years | 6644 | 39 | 1611 | 40 | 2790 | 38 | 2243 | 39 | ||
Time since diagnosis, (mean (sd)) | 12.2 (4.6) | 12.4 (4.5) | 11.6 (4.4) | 12.8 (4.8) | ||||||
5–10 years | 6362 | 37 | 1386 | 35 | 2990 | 41 | 1986 | 34 | 0.0001 | |
≥11–15 years | 558 | 33 | 1397 | 35 | 2496 | 34 | 1687 | 29 | ||
≥16–20 years | 5156 | 30 | 1231 | 31 | 1806 | 25 | 2119 | 37 | ||
Social economic status | Low | 3161 | 19 | 544 | 14 | 1510 | 21 | 1107 | 19 | 0.0001 |
Intermediate | 5427 | 32 | 1236 | 31 | 2354 | 32 | 1837 | 32 | ||
High | 8456 | 50 | 2220 | 56 | 3417 | 47 | 2819 | 49 | ||
Type of cancer | Head and neck | 570 | 3 | 124 | 3 | 305 | 4 | 141 | 2 | 0.0001 |
Colon and rectal | 368 | 2 | 82 | 2 | 151 | 2 | 135 | 2 | ||
Digestive tract, other | 262 | 2 | 31 | 1 | 63 | 1 | 168 | 3 | ||
Respiratory tract | 166 | 1 | 30 | 1 | 71 | 1 | 65 | 1 | ||
Melanoma | 1221 | 7 | 290 | 7 | 617 | 8 | 314 | 5 | ||
Skin, other | 105 | 1 | 0 | 0 | 0 | 0 | 105 | 2 | ||
Breast | 3346 | 20 | 944 | 24 | 1553 | 21 | 849 | 15 | ||
Female genitalia | 2073 | 12 | 445 | 11 | 878 | 12 | 750 | 13 | ||
Male genitalia | 24 | 0 | 6 | 0 | 12 | 0 | 6 | 0 | ||
Urinary tract | 190 | 1 | 46 | 1 | 105 | 1 | 39 | 1 | ||
Thyroid gland | 1054 | 6 | 248 | 6 | 468 | 6 | 338 | 6 | ||
Central nervous system | 545 | 3 | 150 | 4 | 231 | 3 | 164 | 3 | ||
Bone or soft tissue sarcoma | 1256 | 7 | 172 | 4 | 291 | 4 | 793 | 14 | ||
Germ cell tumors | 2743 | 16 | 692 | 17 | 1394 | 19 | 657 | 11 | ||
Lymphoid hematological malignancies | 2339 | 14 | 591 | 15 | 903 | 12 | 845 | 15 | ||
Myeloid hematological malignancies | 671 | 4 | 148 | 4 | 226 | 3 | 297 | 5 | ||
Other | 165 | 1 | 11 | 0 | 18 | 0 | 136 | 2 | ||
Tumor stage | I | 7758 | 45 | 1726 | 43 | 3480 | 48 | 2552 | 44 | 0.0001 |
II | 388 | 23 | 1063 | 27 | 1850 | 25 | 967 | 17 | ||
III | 1994 | 12 | 573 | 14 | 923 | 13 | 498 | 9 | ||
IV | 618 | 4 | 179 | 4 | 298 | 4 | 141 | 2 | ||
Missing | 2848 | 17 | 469 | 12 | 735 | 10 | 1644 | 28 | ||
Primary treatment modality | Surgery | 13,145 | 77 | 3126 | 78 | 5863 | 81 | 4156 | 72 | 0.0017 |
Chemotherapy | 8199 | 48 | 2239 | 56 | 3632 | 50 | 2328 | 40 | 0.0001 | |
Radiotherapy | 7681 | 45 | 1902 | 47 | 3293 | 45 | 2486 | 43 | 0.0213 | |
Hormone therapy | 1734 | 10 | 484 | 12 | 786 | 11 | 464 | 8 | 0.0382 | |
Targeted therapy | 1119 | 7 | 308 | 8 | 514 | 7 | 297 | 5 | 0.2178 | |
Stem cell therapy | 523 | 3 | 142 | 4 | 207 | 3 | 174 | 3 | 0.0392 | |
Marital status (at time of questionnaire) | Partner | NA | NA | 3333 | 83 | NA | NA | NA | NA | |
Education level | No education or primary education | NA | NA | 28 | 1 | NA | NA | NA | NA | |
Secondary education | 266 | 7 | ||||||||
Secondary (vocational) education | 1456 | 36 | ||||||||
Higher (vocational) education | 1374 | 34 | ||||||||
University education | 878 | 22 | ||||||||
Mode of completion | Paper | NA | NA | 647 | 16 | NA | NA | NA | NA | |
Online | 3363 | 84 |
Respondents | Non-Respondents | Odds of Respondents vs. Non-Respondents | ||||||
---|---|---|---|---|---|---|---|---|
N = 4010 | N = 7286 | OR | 95% CI | p- value | ||||
Gender | Male | 1549 | 39 | 3082 | 42 | 1.00 (ref) | ||
Females | 2461 | 61 | 4204 | 58 | 1.246 | 1.108–1.400 | 0.0002 | |
Age (at diagnosis) | 18–24 years | 613 | 15 | 1168 | 16 | 1.00 (ref) | ||
25–34 years | 1786 | 45 | 3328 | 46 | 1.074 | 0.953–1.210 | 0.2420 | |
35–39 years | 1611 | 40 | 2790 | 38 | 1.123 | 0.989–1.275 | 0.0734 | |
Years since diagnosis | 5–10 years | 1386 | 35 | 2990 | 41 | 1.00 (ref) | ||
≥11–15 years | 1397 | 35 | 2496 | 34 | 1.210 | 1.103–1.328 | 0.0001 | |
≥16–20 years | 1231 | 31 | 1806 | 25 | 1.489 | 1.348–1.645 | 0.0001 | |
Social economic status | Low | 544 | 14 | 1510 | 21 | 1.00 (ref) | ||
Intermediate | 1236 | 31 | 2354 | 32 | 1.406 | 1.245–1.587 | 0.0001 | |
High | 2220 | 56 | 3417 | 47 | 1.763 | 1.575–1.974 | 0.0001 | |
Type of cancer | Head and neck | 124 | 3 | 305 | 4 | 0.933 | 0.711–1.224 | 0.6153 |
Colon and rectal | 82 | 2 | 151 | 2 | 1.080 | 0.793–1.472 | 0.6246 | |
Digestive tract, other | 31 | 1 | 63 | 1 | 1.146 | 0.719–1.827 | 0.5673 | |
Respiratory tract | 30 | 1 | 71 | 1 | 0.991 | 0.626–1.570 | 0.9696 | |
Melanoma | 290 | 7 | 617 | 8 | 1.069 | 0.856–1.334 | 0.5576 | |
Breast | 944 | 24 | 1553 | 21 | 1.00 (ref) | |||
Female genitalia | 445 | 11 | 878 | 12 | 1.042 | 0.864–1.257 | 0.6642 | |
Male genitalia | 6 | 0 | 12 | 0 | 1.258 | 0.460–3.439 | 0.6546 | |
Urinary tract | 46 | 1 | 105 | 1 | 1.086 | 0.736–1.604 | 0.6769 | |
Thyroid gland | 248 | 6 | 468 | 6 | 1.213 | 0.976–1.508 | 0.0816 | |
Central nervous system | 150 | 4 | 231 | 3 | 1.402 | 0.998–1.969 | 0.0515 | |
Bone or soft tissue sarcoma | 172 | 4 | 291 | 4 | 1.289 | 1008–1.648 | 0.0430 | |
Germ cell tumors | 692 | 17 | 1394 | 19 | 1.124 | 0.920–1.374 | 0.2532 | |
Lymphoid hematological malignancies | 591 | 15 | 903 | 12 | 1.381 | 1.048–1.820 | 0.0220 | |
Myeloid hematological malignancies | 148 | 4 | 226 | 3 | 1.294 | 0.877–1.908 | 0.1939 | |
Other | 11 | 0 | 18 | 0 | 1.318 | 0.596–2.912 | 0.4951 | |
Tumor stage | I | 1726 | 43 | 3480 | 48 | 1.00 (ref) | ||
II | 1063 | 27 | 1850 | 25 | 1.026 | 0.916–1.149 | 0.6579 | |
III | 573 | 14 | 923 | 13 | 1.174 | 1.022–1.348 | 0.0231 | |
IV | 179 | 4 | 298 | 4 | 1.139 | 0.916–1.417 | 0.2412 | |
Missing | 469 | 12 | 735 | 10 | 1.121 | 0.892–1.409 | 0.3278 | |
Primary treatment modality | Surgery | 3126 | 78 | 5863 | 81 | 1.121 | 0.901–1.395 | 0.3059 |
Chemotherapy | 2239 | 56 | 3632 | 50 | 1.262 | 1.118–1.425 | 0.0002 | |
Radiotherapy | 1902 | 47 | 3293 | 45 | 1.030 | 0.935–1.135 | 0.5475 | |
Hormone therapy | 484 | 12 | 786 | 11 | 0.991 | 0.841–1.168 | 0.9156 | |
Targeted therapy | 308 | 8 | 514 | 7 | 1.013 | 0.862–1.191 | 0.8762 | |
Stem cell therapy | 142 | 4 | 207 | 3 | 0.996 | 0.772–1.284 | 0.9738 |
N | % | |
---|---|---|
Not interested in the research | 379 | 49 |
Don’t want to think about cancer | 243 | 32 |
Too busy | 148 | 19 |
Questionnaire is too long/too personal/difficult | 97 | 13 |
Don’t consider themself a young adult cancer patient | 97 | 13 |
Have participated in research too many times | 58 | 8 |
No personal incentive or benefit | 32 | 4 |
Not capable to participate * | 20 | 3 |
Don’t see the added value of this research | 21 | 3 |
Worried about privacy aspects | 16 | 2 |
Practical problems in participating ** | 16 | 2 |
Other *** | 16 | 2 |
Unclear what causes symptoms because of comorbidities | 14 | 2 |
Prefer an in person invitation | 9 | 1 |
Multiple answers could be given |
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Vlooswijk, C.; Poll-Franse, L.V.v.d.; Janssen, S.H.M.; Derksen, E.; Reuvers, M.J.P.; Bijlsma, R.; Kaal, S.E.J.; Kerst, J.M.; Tromp, J.M.; Bos, M.E.M.M.; et al. Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study. Curr. Oncol. 2022, 29, 5407-5425. https://doi.org/10.3390/curroncol29080428
Vlooswijk C, Poll-Franse LVvd, Janssen SHM, Derksen E, Reuvers MJP, Bijlsma R, Kaal SEJ, Kerst JM, Tromp JM, Bos MEMM, et al. Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study. Current Oncology. 2022; 29(8):5407-5425. https://doi.org/10.3390/curroncol29080428
Chicago/Turabian StyleVlooswijk, Carla, Lonneke V. van de Poll-Franse, Silvie H. M. Janssen, Esther Derksen, Milou J. P. Reuvers, Rhodé Bijlsma, Suzanne E. J. Kaal, Jan Martijn Kerst, Jacqueline M. Tromp, Monique E. M. M. Bos, and et al. 2022. "Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study" Current Oncology 29, no. 8: 5407-5425. https://doi.org/10.3390/curroncol29080428