Alberta Childhood Cancer Survivorship Research Program
Adverse outcomes after childhood cancer have been assessed in a range of settings, but most existing studies are historical and ascertain outcomes only after 5-year survival. Here, we describe the Alberta Childhood Cancer Survivorship Research Program and its foundational retrospective, population-b...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-08-01
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| Series: | Cancers |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2072-6694/15/15/3932 |
| _version_ | 1797586921978855424 |
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| author | Andrew Harper Fiona Schulte Gregory M. T. Guilcher Tony H. Truong Kathleen Reynolds Maria Spavor Natalie Logie Joon Lee Miranda M. Fidler-Benaoudia |
| author_facet | Andrew Harper Fiona Schulte Gregory M. T. Guilcher Tony H. Truong Kathleen Reynolds Maria Spavor Natalie Logie Joon Lee Miranda M. Fidler-Benaoudia |
| author_sort | Andrew Harper |
| collection | DOAJ |
| description | Adverse outcomes after childhood cancer have been assessed in a range of settings, but most existing studies are historical and ascertain outcomes only after 5-year survival. Here, we describe the Alberta Childhood Cancer Survivorship Research Program and its foundational retrospective, population-based cohort of Albertan residents diagnosed with a first primary neoplasm between the ages of 0 and 17 years from 1 January 2001 to 31 December 2018. The cohort was established in collaboration with the Alberta Cancer Registry and Cancer in Young People in Canada program and has been linked to existing administrative health databases and patient-reported outcome questionnaires. The cohort comprised 2580 survivors of childhood cancer, 1379 (53.4%) of whom were 5-year survivors. Approximately 48% of the cohort was female, 47% of the cohort was diagnosed between 0 and 4 years of age, and the most frequent diagnoses were leukemias (25.4%), central nervous system tumors (24.0%), and lymphomas (14.9%). Detailed treatment information was available for 1741 survivors (67.5%), with manual abstraction ongoing for those with missing data. By the study exit date, the median time since diagnosis was 5.5 years overall and 10.4 years for 5-year survivors. During the follow-up time, 82 subsequent primary cancers were diagnosed, 20,355 inpatient and 555,425 ambulatory/outpatient events occurred, 606,773 claims were reported, and 437 survivors died. The results from this research program seek to inform and improve clinical care and reduce cancer-related sequelae via tertiary prevention strategies. |
| first_indexed | 2024-03-11T00:30:01Z |
| format | Article |
| id | doaj.art-116d590f9279411bb608df4075ce9d68 |
| institution | Directory Open Access Journal |
| issn | 2072-6694 |
| language | English |
| last_indexed | 2024-03-11T00:30:01Z |
| publishDate | 2023-08-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Cancers |
| spelling | doaj.art-116d590f9279411bb608df4075ce9d682023-11-18T22:43:20ZengMDPI AGCancers2072-66942023-08-011515393210.3390/cancers15153932Alberta Childhood Cancer Survivorship Research ProgramAndrew Harper0Fiona Schulte1Gregory M. T. Guilcher2Tony H. Truong3Kathleen Reynolds4Maria Spavor5Natalie Logie6Joon Lee7Miranda M. Fidler-Benaoudia8Department of Cancer Epidemiology and Prevention Research, Cancer Care Alberta, Alberta Health Services, Calgary, AB T2S 3C3, CanadaDepartment of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, CanadaDepartment of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, CanadaDepartment of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, CanadaLong Term Survivor’s Clinic, Alberta Children’s Hospital, Calgary, AB T2N 4N1, CanadaDepartment of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB T6G 2R7, CanadaDivision of Radiation Oncology, Tom Baker Cancer Centre, Alberta Health Services, Calgary, AB T2N 4N2, CanadaData Intelligence for Health Lab, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, CanadaDepartment of Cancer Epidemiology and Prevention Research, Cancer Care Alberta, Alberta Health Services, Calgary, AB T2S 3C3, CanadaAdverse outcomes after childhood cancer have been assessed in a range of settings, but most existing studies are historical and ascertain outcomes only after 5-year survival. Here, we describe the Alberta Childhood Cancer Survivorship Research Program and its foundational retrospective, population-based cohort of Albertan residents diagnosed with a first primary neoplasm between the ages of 0 and 17 years from 1 January 2001 to 31 December 2018. The cohort was established in collaboration with the Alberta Cancer Registry and Cancer in Young People in Canada program and has been linked to existing administrative health databases and patient-reported outcome questionnaires. The cohort comprised 2580 survivors of childhood cancer, 1379 (53.4%) of whom were 5-year survivors. Approximately 48% of the cohort was female, 47% of the cohort was diagnosed between 0 and 4 years of age, and the most frequent diagnoses were leukemias (25.4%), central nervous system tumors (24.0%), and lymphomas (14.9%). Detailed treatment information was available for 1741 survivors (67.5%), with manual abstraction ongoing for those with missing data. By the study exit date, the median time since diagnosis was 5.5 years overall and 10.4 years for 5-year survivors. During the follow-up time, 82 subsequent primary cancers were diagnosed, 20,355 inpatient and 555,425 ambulatory/outpatient events occurred, 606,773 claims were reported, and 437 survivors died. The results from this research program seek to inform and improve clinical care and reduce cancer-related sequelae via tertiary prevention strategies.https://www.mdpi.com/2072-6694/15/15/3932childhood cancerpediatric cancersurvivorshipepidemiology |
| spellingShingle | Andrew Harper Fiona Schulte Gregory M. T. Guilcher Tony H. Truong Kathleen Reynolds Maria Spavor Natalie Logie Joon Lee Miranda M. Fidler-Benaoudia Alberta Childhood Cancer Survivorship Research Program Cancers childhood cancer pediatric cancer survivorship epidemiology |
| title | Alberta Childhood Cancer Survivorship Research Program |
| title_full | Alberta Childhood Cancer Survivorship Research Program |
| title_fullStr | Alberta Childhood Cancer Survivorship Research Program |
| title_full_unstemmed | Alberta Childhood Cancer Survivorship Research Program |
| title_short | Alberta Childhood Cancer Survivorship Research Program |
| title_sort | alberta childhood cancer survivorship research program |
| topic | childhood cancer pediatric cancer survivorship epidemiology |
| url | https://www.mdpi.com/2072-6694/15/15/3932 |
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