The cumulative burden of self‐reported, clinically relevant outcomes in long‐term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study
Open accessAbstract
Background: The aim of this study is to evaluate how cumulative burden of clinically relevant, self‐reported outcomes in childhood cancer survivors (CCSs) compares to a sibling control group and to explore how the burden corresponds to levels of care proposed by existing risk stratifications. Methods: The authors invited 5925 5‐year survivors from the Dutch Childhood Cancer Survivor Study (DCCSS LATER) cohort and their 1066 siblings to complete a questionnaire on health outcomes. Health outcomes were validated by self‐reported medication use or medical record review. Missing data on clinically relevant outcomes in CCSs for whom no questionnaire data were available were imputed with predictive mean matching. We calculated the mean cumulative count (MCC) for clinically relevant outcomes. Furthermore, we calculated 30‐year MCC for groups of CCSs based on primary cancer diagnosis and treatment, ranked 30‐year MCC, and compared the ranking to levels of care according to existing risk stratifications. Results: At median 18.5 years after 5‐year survival, 46% of CCSs had at least one clinically relevant outcome. CCSs experienced 2.8 times more health conditions than siblings (30‐year MCC = 0.79; 95% confidence interval [CI], 0.74–0.85 vs. 30‐year MCC = 0.29; 95% CI, 0.25–0.34). CCSs’ burden of clinically relevant outcomes consisted mainly of endocrine and vascular conditions and varied by primary cancer type. The ranking of the 30‐year MCC often did not correspond with levels of care in existing risk stratifications. Conclusions: CCSs experience a high cumulative burden of clinically relevant outcomes that was not completely reflected by current risk stratifications. Choices for survivorship care should extend beyond primary tumor and treatment parameters, and should consider also including CCSs’ current morbidity.
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Health conditions were assessed in the DCCSS-LATER 1 study and validated through self-reported medication use or review of medical records.
“Health conditions were assessed in the DCCSSLATER 1 study, and validated through self-reported medication use or review of medical records, as reported previously [3].”
From Risk and Protective Factors of Psychosocial Functioning in Survivors of Childhood Cancer: Results of the DCCSS-LATER Study (2024) · cites this paper as [3]
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- Authors
- Streefkerk, N., Teepen, J. C., Feijen, E. A. M., Jóźwiak, K., van der Pal, H. J. H., Ronckers, C. M., De Vries, A. C. H., Van der Heiden‐van Der Loo, M., Hollema, N., van den Berg, M., Loonen, J., Grootenhuis, M. A., Bresters, D., Versluys, A. B., van Dulmen‐den Broeder, E., van den Heuvel‐Eibrink, M. M., van Leeuwen, F. E., Neggers, S. J. C. M. M., Van Santen, H. M., Hawkins, M., Hauptmann, M., Yoneoka, D., Korevaar, J. C., Tissing, W. J. E., Kremer, L. C. M., & DCCSS LATER Study Group
- Affiliations
- Emma Kinderziekenhuis (NL)
- Princess Máxima Center (NL)
- The Netherlands Cancer Institute (NL)
- Princess Máxima Center for Pediatric Oncology Utrecht The Netherlands
- St. Antonius Ziekenhuis (NL)
- Department of Pediatric Oncology/Hematology Amsterdam UMC Vrije Universiteit Amsterdam Amsterdam The Netherlands
- Radboud University Medical Center (NL)
- Department of Epidemiology and Biostatistics The Netherlands Cancer Institute Amsterdam The Netherlands
- Erasmus MC (NL)
- University of Birmingham (GB)
- St. Luke's International University (JP)
- Netherlands Institute for Health Services Research (NL)
- University Medical Center Groningen (NL)
- University Medical Center Utrecht (NL)
- Corresponding author
- Kremer, Leontien C. M.
- ORCID
- Venue
- Cancer
- Publisher
- Wiley
- Published
- 2023-12-15
- Volume
- 130
- Issue
- 8
- Pages
- 1349-1358
- ISSN
- 0008-543X (ISSN-L)
- 1097-0142
- OpenAlex
- W4389777783
- Cited by
- 15
- References
- 15
- Citations by year
- 2026: 7 · 2025: 5 · 2024: 3
- FWCI
- 5.52
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Cancer (publishedVersion, other-oa)
- PubMed (publishedVersion)
- Pure Amsterdam UMC (publishedVersion, other-oa)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion, other-oa)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion, other-oa)
- Radboud Repository (Radboud University) (submittedVersion)
- Funders
- CHILDREN with CANCER UK (20-335)
- Brain Tumour Charity (GN-000624)
- KWF Kankerbestrijding (UVA2014‐6805, UVA2012-5517)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Acute Lymphoblastic Leukemia research
- Keywords
- childhood cancer survivors, long-term follow-up, survivorship care, risk stratification, endocrine complications, vascular complications, siblings as controls, primary cancer type
- MeSH terms
- Cancer Survivors, Survivorship, Child, Humans, Neoplasms, Survivors, Self Report
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