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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/). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.

Abstract

Simple Summary

Treatments used to cure childhood cancer can have negative long-term impacts on physical health and well-being. Here, we present the Alberta Childhood Cancer Survivorship Research Program, its foundational cohort, and descriptive statistics of outcomes ascertained through data linkage. To this end, 2581 survivors of childhood cancer were included in the cohort, the majority of which were male, diagnosed between the ages of 0 and 4 years, with leukemia, central nervous system tumor, or lymphoma. By the study exit date, the median time since diagnosis was 5.6 years overall and 10.3 years for 5-year survivors. During the follow-up time, 94 subsequent cancers were diagnosed, 16,669 inpatient and 445,150 ambulatory/outpatient events occurred, 396,074 claims were reported, and 408 survivors died. The results from this research program seek to inform and improve clinical care and reduce cancer-related sequelae.

Abstract

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 2581 survivors of childhood cancer, 1385 (53.7%) of whom were 5-year survivors. Approximately 48% of the cohort was female, 46% of the cohort was diagnosed between 0 and 4 years of age, and the most frequent diagnoses were leukemias (25.3%), central nervous system tumors (24.2%), and lymphomas (14.9%). Detailed treatment information was available for 1745 survivors (67.6%), with manual abstraction ongoing for those with missing data. By the study exit date, the median time since diagnosis was 5.6 years overall and 10.3 years for 5-year survivors. During the follow-up time, 94 subsequent primary cancers were diagnosed, 16,669 inpatient and 445,150 ambulatory/outpatient events occurred, 396,074 claims were reported, and 408 survivors died. The results from this research program seek to inform and improve clinical care and reduce cancer-related sequelae via tertiary prevention strategies.

Details

Title
Alberta Childhood Cancer Survivorship Research Program
Author
Harper, Andrew 1 ; Schulte, Fiona 2   VIAFID ORCID Logo  ; Guilcher, Gregory M T 3 ; Truong, Tony H 3 ; Reynolds, Kathleen 4 ; Spavor, Maria 5 ; Logie, Natalie 6 ; Lee, Joon 7   VIAFID ORCID Logo  ; Fidler-Benaoudia, Miranda M 8   VIAFID ORCID Logo 

 Department of Cancer Epidemiology and Prevention Research, Cancer Care Alberta, Alberta Health Services, Calgary, AB T2S 3C3, Canada; [email protected] 
 Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, Canada; [email protected] (F.S.); [email protected] (G.M.T.G.); [email protected] (T.H.T.); Long Term Survivor’s Clinic, Alberta Children’s Hospital, Calgary, AB T2N 4N1, Canada; [email protected] 
 Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, Canada; [email protected] (F.S.); [email protected] (G.M.T.G.); [email protected] (T.H.T.); Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada 
 Long Term Survivor’s Clinic, Alberta Children’s Hospital, Calgary, AB T2N 4N1, Canada; [email protected]; Department of Medicine, Faculty of Family Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada 
 Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB T6G 2R7, Canada; [email protected] 
 Division of Radiation Oncology, Tom Baker Cancer Centre, Alberta Health Services, Calgary, AB T2N 4N2, Canada; [email protected] 
 Data Intelligence for Health Lab, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada; [email protected]; Department of Cardiac Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada; Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada 
 Department of Cancer Epidemiology and Prevention Research, Cancer Care Alberta, Alberta Health Services, Calgary, AB T2S 3C3, Canada; [email protected]; Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 1N4, Canada; [email protected] (F.S.); [email protected] (G.M.T.G.); [email protected] (T.H.T.); Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4N1, Canada 
First page
3932
Publication year
2023
Publication date
2023
Publisher
MDPI AG
e-ISSN
20726694
Source type
Scholarly Journal
Language of publication
English
ProQuest document ID
2848968170
Copyright
© 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/). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.