TY - JOUR
T1 - The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care
T2 - A DCCSS LATER study
AU - Streefkerk, Nina
AU - Teepen, Jop C.
AU - Feijen, Elizabeth A. M.
AU - Jóźwiak, Katarzyna
AU - van der Pal, Helena J. H.
AU - Ronckers, Cecile M.
AU - de Vries, Andrica C. H.
AU - van der Heiden-van der Loo, Margriet
AU - Hollema, Nynke
AU - van den Berg, Marleen
AU - Loonen, Jacqueline
AU - Grootenhuis, Martha A.
AU - Bresters, Dorine
AU - Versluys, A. Brigitta
AU - van Dulmen-den Broeder, Eline
AU - van den Heuvel-Eibrink, Marry M.
AU - van Leeuwen, Flora E.
AU - Neggers, Sebastian J. C. M. M.
AU - van Santen, Hanneke M.
AU - Hawkins, Mike
AU - Hauptmann, Michael
AU - Yoneoka, Daisuke
AU - Korevaar, Joke C.
AU - Tissing, Wim J. E.
AU - Kremer, Leontien C. M.
N1 - Publisher Copyright: © 2023 American Cancer Society.
PY - 2024/4/15
Y1 - 2024/4/15
N2 - 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.
AB - 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.
KW - childhood cancer survivors
KW - clinically relevant health outcomes
KW - cumulative burden
KW - late effects
KW - mean cumulative count
KW - questionnaire
UR - http://www.scopus.com/inward/record.url?scp=85179717570&partnerID=8YFLogxK
U2 - 10.1002/cncr.35148
DO - 10.1002/cncr.35148
M3 - Article
C2 - 38100618
SN - 0008-543X
VL - 130
SP - 1349
EP - 1358
JO - Cancer
JF - Cancer
IS - 8
ER -