Alberta Childhood Cancer Survivorship Research Program
Abstract
:Simple Summary
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Setting
2.2. Study Population
2.3. Long-Term Survivor Clinic (LTSC)
2.4. Late-Effect Ascertainment
2.4.1. Alberta Cancer Registry (ACR)
2.4.2. Discharge Abstract Database (DAD)
2.4.3. National Ambulatory Care Reporting System (NACRS)
2.4.4. Practitioner Claims
2.4.5. Long-Term Survivor Questionnaire (LTSQ)
3. Results
3.1. Cohort Characteristics
3.2. Late Effects
4. Discussion
4.1. Strengths of the Research Program
4.2. Comparisons with the Literature
4.3. Limitations
4.4. Future Directions
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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Characteristic | Overall (%) | 5-Year Survivors (%) |
---|---|---|
N | 2580 | 1379 |
Sex | ||
Male | 1354 (52.5) | 736 (53.4) |
Female | 1226 (47.5) | 643 (46.6) |
Time Since Diagnosis (years) 1 | ||
0–<5 | 1201 (46.6) | 0 (0.0) |
5–<10 | 622 (24.1) | 622 (45.1) |
10–<14 | 521 (20.2) | 521 (37.8) |
≥15 | 236 (9.2) | 236 (17.1) |
Median (IQR) | 5.5 (1.9–10.9) | 10.4 (7.5–13.8) |
ICCC-3 Diagnosis Category | ||
Leukemias, myeloproliferative diseases, and myelodysplastic diseases | 654 (25.4) | 364 (26.4) |
Lymphomas and reticuloendothelial neoplasms | 384 (14.9) | 232 (16.8) |
CNS and miscellaneous intracranial and intraspinal neoplasms | 620 (24.0) | 310 (22.5) |
Neuroblastoma and other peripheral nervous cell tumors | 161 (6.2) | 81 (5.9) |
Retinoblastoma | 57 (2.2) | 38 (2.8) |
Renal tumors | 109 (4.2) | 67 (4.9) |
Hepatic tumors | 48 (1.9) | 19 (1.4) |
Malignant bone tumors | 126 (4.9) | 56 (4.1) |
Soft tissue and other extraosseous sarcomas | 148 (5.7) | 68 (4.9) |
Germ cell tumors, trophoblastic tumors, and neoplasms of gonads | 110 (4.3) | 61 (4.4) |
Other malignant epithelial neoplasms and malignant melanomas | 154 (6.0) | 79 (5.7) |
Other and unspecified malignant neoplasms | 9 (0.4) | 4 (0.3) |
Year of Diagnosis | ||
2001–2005 | 619 (24.0) | 501 (36.3) |
2006–2010 | 676 (26.2) | 548 (39.7) |
2011–2015 | 786 (30.5) | 330 (23.9) |
2016–2018 | 499 (19.3) | 0 (0.0) |
Age at Diagnosis (years) | ||
0–4 | 996 (38.6) | 507 (36.8) |
5–9 | 504 (19.5) | 267 (19.4) |
10–14 | 553 (21.4) | 310 (22.5) |
15–17 | 527 (20.4) | 295 (21.4) |
Median (IQR) | 7.6 (3.0–14.1) | 8.1 (3.2–14.4) |
Attained Age (years) 1 | ||
0–4 | 316 (12.3) | 0 (0.0) |
5–9 | 451 (17.5) | 131 (9.5) |
10–14 | 511 (19.8) | 278 (20.2) |
15–19 | 582 (22.6) | 300 (21.8) |
20–24 | 405 (15.7) | 355 (25.7) |
25–29 | 225 (8.7) | 225 (16.3) |
30–34 | 89 (3.5) | 89 (6.5) |
≥35 | 1 (<0.1) | 1 (0.1) |
Median (IQR) | 15.1 (8.7–20.8) | 19.7 (14.0–24.5) |
CYP-C Treatment | ||
No treatment | 73 (2.8) | 21 (1.5) |
CT only | 586 (22.7) | 316 (22.9) |
RT only | 11 (0.4) | 2 (0.2) |
Surgery only | 215 (8.3) | 127 (9.2) |
CT + RT | 154 (6.0) | 81 (5.9) |
CT + Surgery | 345 (13.4) | 176 (12.8) |
RT + Surgery | 71 (2.8) | 39 (2.8) |
CT + RT + Surgery | 290 (11.2) | 139 (10.1) |
Patients with missing treatment information | 835 (32.4) | 478 (34.7) |
Zone of Diagnosis | ||
South | 164 (6.4) | 89 (6.5) |
Calgary | 913 (35.4) | 468 (33.9) |
Central | 343 (13.3) | 202 (14.7) |
Edmonton | 816 (31.6) | 438 (31.8) |
North | 343 (13.3) | 181 (13.1) |
Alberta, zone unknown | 1 (<0.1) | 1 (0.1) |
Chemotherapy Agent | Records | Records with Value (%) | Median (mg/m2) (IQR) |
---|---|---|---|
Bleomycin Blenoxane Bleo | 96 | 95 (99.0) | 60.6 (46.0–69.1) |
Busulphan Busulfan (Myleran) | 4 | 4 (100.0) | 346.3 (295.3–429.1) |
Carboplatin CBDCA Paraplatin Carboplatinum | 208 | 163 (78.4) | 1466.3 (980.1–2232.9) |
Carmustine (BCNU) Bis-Chloroethyl-Nitrosourea BiCNU | 2 | 2 (100.0) | 309.9 (58.4–561.4) |
Cisplatin CDDP Platinol Cisplatinum Cis-diamminedicloro-platinum II P | 232 | 232 (100.0) | 368.4 (230.4–454.3) |
Cyclophosphamide Cytoxan CTX Procytox | 836 | 830 (99.3) | 3002.8 (1124.9–5293.9) |
Cytarabine (IT ONLY) Ara-C Cytosar Cytosine arabinoside | 556 | 441 (79.3) | 95.6 (75.4–188.3) |
Cytarabine (ONLY IV ≥ 500mg/m2 per dose) Ara-C Cytosar Cytosine arabinoside | 146 | 145 (99.3) | 15,009.4 (10,349.3–24,129.0) |
Daunomycin Daunorubicin Cerubidine DNR | 299 | 298 (99.7) | 102.1 (96.9–166.2) |
Doxorubicin Adriamycin ADR | 785 | 779 (99.2) | 109.7 (74.6–218.0) |
Doxorubicin-Pegylated Liposomal (DOXIL) PLD | 4 | 4 (100.0) | 111.9 (78.0–436.7) |
Etoposide (VP16) VePesid ETOP | 563 | 558 99.1) | 1336.3 (601.9–1875.0) |
Etoposide Phosphate | 3 | 2 (66.7) | 2107.5 (1200.0–3015.0) |
Hydrocortisone (IT ONLY) | 112 | 89 (79.5) | 80.3 (40.8–162.6) |
Idarubicin Idamycin 4-Demethoxydaunorubicin | 28 | 28 (100.0) | 11.0 (9.9–20.9) |
Ifosfamide Isophosphamide IFOS Ifex Holoxan | 217 | 215 (99.1) | 20,354.5 (6052.1–46,236.1) |
Lomustine (CCNU) CeeNU Chloroethyl-Cyclohexyl-Nitrosurea | 20 | 18 (90.0) | 445.8 (299.3–568.5) |
Melphalan L-PAM Alkeran L-Sarcolysin | 5 | 5 (100.0) | 177.5 (100.4–192.5) |
Methotrexate (IT ONLY) MTX Amethopterin | 558 | 446 (79.9) | 243.6 (113.1–300.0) |
Methotrexate (IV ≥ 500mg/m2 ONLY) MTX Amethopterin | 354 | 351 (99.2) | 14,497.6 (6319.5–20,000.0) |
Mitoxantrone Novantrone DHAD Dihydrochloride | 57 | 57 (100.0) | 46.6 (34.4–48.5) |
Oxaliplatin Eloxatin | 4 | 4 (100.0) | 178.6 (53.5–286.2) |
Procarbazine PCB Natulan Matulane | 7 | 6 (85.7) | 733.0 (62.3–1600.0) |
Teniposide (Vumon) VM-26 | 21 | 21 (100.0) | 404.2 (383.7–529.0) |
Thiotepa TESPA Triethylene Thiophosphoramide | 12 | 11 (91.7) | 502.2 (16.8–1271.8) |
Radiotherapy Site | Patients | Patients with Dosage (%) | Median (cGy) (IQR) |
All Sites Combined | 526 | 513 (97.5) | 2550.0 (1800.0–4776.0) |
Abdomen | 86 | 86 (100.0) | 1490.0 (1080.0–2400.0) |
Central Nervous System 1 | 267 | 265 (99.3) | 3600.0 (1800.0–5400.0) |
Chest | 6 | 6 (100.0) | 2325.0 (1500.0–4500.0) |
Face 2 | 16 | 16 (100.0) | 3870.0 (2000.0–4320.0) |
Limb | 43 | 42 (97.7) | 4500.0 (2200.0–5000.0) |
Liver | 3 | 3 (100.0) | 600.0 (450.0–1200.0) |
Lung | 32 | 32 (100.0) | 1500.0 (1200.0–2130.0) |
Lymph Nodes 3 | 56 | 56 (100.0) | 210,000 (2100.0–3075.0) |
Nasopharynx | 5 | 5 (100.0) | 4150.0 (3600.0–4500.0) |
Neck | 56 | 56 (100.0) | 2100.0 (2100.0–3375.0) |
Pelvis | 35 | 35 (100.0) | 2100.0 (1050.0–3600.0) |
Skull | 18 | 17 (94.4) | 2400.0 (1500.0–4500.0) |
Spleen | 11 | 11 (100.0) | 2100.0 (2100.0–2100.0) |
Testis | 3 | 3 (100.0) | 3600.0 (1200.0–8659.0) |
Thorax 4 | 40 | 40 (100.0) | 2100.0 (2100.0–2550.0) |
Other | 85 | 82 (96.5) | 2602.5 (2000.0–5000.0) |
Missing 5 | 17 | 3 (17.7) | 2160.0 (1440.0–5400.0) |
Characteristic | Overall (%) | 5-Year Survivors (%) |
---|---|---|
N | 835 | 478 |
Sex | ||
Male | 399 (47.8) | 236 (49.4) |
Female | 436 (52.2) | 242 (50.6) |
Time Since Diagnosis (years) 1 | ||
0–<5 | 357 (42.8) | 0 (0.0) |
5–<10 | 242 (29.0) | 242 (50.6) |
10–<14 | 171 (20.5) | 171 (35.8) |
≥15 | 65 (7.8) | 65 (13.6) |
Median (IQR) | 6.0 (2.1–10.6) | 9.9 (7.0–13.2) |
ICCC-3 Diagnosis Category | ||
Leukemias, myeloproliferative diseases, and myelodysplastic diseases | 109 (13.1) | 53 (11.1) |
Lymphomas and reticuloendothelial neoplasms | 142 (17.0) | 97 (20.3) |
CNS and miscellaneous intracranial and intraspinal neoplasms | 244 (29.2) | 144 (30.1) |
Neuroblastoma and other peripheral nervous cell tumors | 16 (1.9) | 7 (1.5) |
Retinoblastoma | 40 (4.8) | 31 (6.5) |
Renal tumors | 6 (0.7) | 5 (1.1) |
Hepatic tumors | 3 (0.4) | 1 (0.2) |
Malignant bone tumors | 46 (5.5) | 19 (4.0) |
Soft tissue and other extraosseous sarcomas | 39 (4.7) | 21 (4.4) |
Germ cell tumors, trophoblastic tumors, and neoplasms of gonads | 56 (6.7) | 31 (6.5) |
Other malignant epithelial neoplasms and malignant melanomas | 132 (15.8) | 68 (14.2) |
Other and unspecified malignant neoplasms | 2 (0.2) | 1 (0.2) |
Year of Diagnosis | ||
2001–2005 | 213 (25.5) | 163 (34.1) |
2006–2010 | 216 (25.9) | 176 (36.8) |
2011–2015 | 278 (33.3) | 139 (29.1) |
2016–2018 | 128 (15.3) | 0 (0.0) |
Age at Diagnosis (years) | ||
0–4 | 158 (18.9) | 78 (16.3) |
5–9 | 65 (7.8) | 30 (6.3) |
10–14 | 127 (15.2) | 77 (16.1) |
15–17 | 485 (58.1) | 293 (61.3) |
Median (IQR) | 15.5 (8.6–16.8) | 15.7 (11.4–17.0) |
Attained Age (years) 1 | ||
0–4 | 63 (7.5) | 0 (0.0) |
5–9 | 74 (8.9) | 31 (6.5) |
10–14 | 74 (8.9) | 36 (7.5) |
15–19 | 210 (25.5) | 45 (9.4) |
20–24 | 202 (24.2) | 154 (32.2) |
25–29 | 137 (16.4) | 137 (28.7) |
30–34 | 74 (8.9) | 74 (15.5) |
≥35 | 1 (0.1) | 1 (0.2) |
Median (IQR) | 19.9 (14.8–25.2) | 24.3 (20.6–28.2) |
Zone of Diagnosis | ||
South | 63 (7.5) | 38 (8.0) |
Calgary | 287 (34.4) | 152 (31.8) |
Central | 117 (14.0) | 76 (15.9) |
Edmonton | 249 (29.8) | 149 (31.2) |
North | 118 (14.1) | 62 (13.0) |
Alberta, zone unknown | 1 (0.1) | 1 (0.2) |
Database and Outcome | Overall (%) | 5-Year Survivors (%) |
2580 | 1379 | |
Alberta Cancer Registry | ||
Second primary neoplasms observed | 82 (3.2) | 46 (3.3) |
Number of survivors | 58 (70.7) | 40 (87.0) |
Vital Statistics | ||
Alive | 2143 (83.1) | 1338 (97.0) |
Deceased | 437 (16.9) | 41 (3.0) |
Cause known | 432 (98.9) | 41 (100.0) |
Cause unknown | 5 (1.1) | 0 (0.0) |
Discharge Abstract Database | ||
Number of inpatients discharged; events in overall data | 20,355 | 20,355 |
Number of survivors found via linkage | 2439 (94.5) | 1229 (89.1) |
Number of inpatients discharged; events relevant to survivors | 19,910 (97.8) | 10,596 (52.1) |
National Ambulatory Care Reporting System | ||
Number of ambulatory/outpatient; events in overall data | 555,425 | 555,425 |
Number of survivors found via linkage | 2559 (99.2) | 1379 (100.0) |
Number of ambulatory/outpatient; events relevant to survivors | 491,542 (88.5) | 304,363 (54.8) |
Practitioner Claims | ||
Number of claims records in overall data | 606,773 | 606,773 |
Number of survivors found via linkage | 2551 (98.9) | 1373 (99.6) |
Number of claims records relevant to survivors | 518,580 (85.5) | 285,415 (47.0) |
Cohort | Alberta Childhood Cancer Survivorship Research Program | Childhood, Adolescent, and Young Adult Cancer Survivors Research Program | North American Childhood Cancer Survivor Study | Adult Life after Childhood Cancer in Scandinavia | British Childhood Cancer Survivor Study | Dutch Childhood Oncology Group LATER | Swiss Childhood Cancer Survivor Study | French Childhood Cancer Survivor Study |
Country | Canada | Canada | Canada United States | Denmark Finland Iceland Norway Sweden | England Scotland Wales | The Netherlands | Switzerland | France |
Identification of survivors | Registry-based | Registry-based | Institution-based | Registry-based | Registry-based | Registry-based | Registry-based | Registry-based |
Number of survivors | 2580 | 3841 | 38,036 | 33,160 | 34,490 | 6168 | 4405 | 7670 |
Age at cancer diagnosis | 0–17 | 0–24 | 0–20 | 0–19 | 0–14 | 0–17 | 0–20 | 0–19 |
Diagnosis years | 2001–2018 | 1970–1995 | 1970–1999 | 1943–2008 | 1940–2006 | 1963–2002 | 1976–2014 | 1945–2000 |
Cancer types | All | All | Leukemia, tumor of the central nervous system, Hodgkin lymphoma, non-Hodgkin lymphoma, Wilms tumor, neuroblastoma, soft-tissue sarcoma, and bone tumor | All | All | All | All | All except leukemia |
Entry for follow-up | Diagnosis | 5 years post-diagnosis | 5 years post-diagnosis | 1-year post-diagnosis | 5 years post-diagnosis | 5 years post-diagnosis | 5 years post-diagnosis | 5 years post-diagnosis |
Detailed treatment information | Yes (collection ongoing) | No | Yes | No | No | No | No | No |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Harper, A.; Schulte, F.; Guilcher, G.M.T.; Truong, T.H.; Reynolds, K.; Spavor, M.; Logie, N.; Lee, J.; Fidler-Benaoudia, M.M. Alberta Childhood Cancer Survivorship Research Program. Cancers 2023, 15, 3932. https://doi.org/10.3390/cancers15153932
Harper A, Schulte F, Guilcher GMT, Truong TH, Reynolds K, Spavor M, Logie N, Lee J, Fidler-Benaoudia MM. Alberta Childhood Cancer Survivorship Research Program. Cancers. 2023; 15(15):3932. https://doi.org/10.3390/cancers15153932
Chicago/Turabian StyleHarper, Andrew, Fiona Schulte, Gregory M. T. Guilcher, Tony H. Truong, Kathleen Reynolds, Maria Spavor, Natalie Logie, Joon Lee, and Miranda M. Fidler-Benaoudia. 2023. "Alberta Childhood Cancer Survivorship Research Program" Cancers 15, no. 15: 3932. https://doi.org/10.3390/cancers15153932