The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study (2024)

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., ... Kremer, L. C. M. (2024). The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study. Cancer, 130(8), 1349-1358. https://doi.org/10.1002/cncr.35148

Streefkerk, Nina ; Teepen, Jop C. ; Feijen, Elizabeth A.M. et al. / The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care : A DCCSS LATER study. In: Cancer. 2024 ; Vol. 130, No. 8. pp. 1349-1358.

@article{8f19ec83726e4e9ea7fcd6d5c51fd1d5,

title = "The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study",

abstract = "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 aquestionnaire 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 18.5years 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{\textquoteright} 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{\textquoteright} current morbidity.",

author = "Nina Streefkerk and Teepen, {Jop C.} and Feijen, {Elizabeth A.M.} and Katarzyna J{\'o}{\'z}wiak and {van der Pal}, {Helena J.H.} and Ronckers, {Cecile M.} and {De Vries}, {Andrica C.H.} and {Van der Heiden-van Der Loo}, Margriet and Nynke Hollema and {van den Berg}, Marleen and Jacqueline Loonen and Grootenhuis, {Martha A.} and Dorine Bresters and Versluys, {A. Brigitta} and {van Dulmen-den Broeder}, Eline and {van den Heuvel-Eibrink}, {Marry M.} and {van Leeuwen}, {Flora E.} and Neggers, {Sebastian J.C.M.M.} and {Van Santen}, {Hanneke M.} and Mike Hawkins and Michael Hauptmann and Daisuke Yoneoka and Korevaar, {Joke C.} and Tissing, {Wim J.E.} and Kremer, {Leontien C.M.}",

note = "Publisher Copyright: {\textcopyright} 2023 American Cancer Society.",

year = "2024",

month = apr,

day = "15",

doi = "10.1002/cncr.35148",

language = "English",

volume = "130",

pages = "1349--1358",

journal = "Cancer",

issn = "0008-543X",

publisher = "John Wiley & Sons Inc.",

number = "8",

}

Streefkerk, N, Teepen, JC, Feijen, EAM, Jóźwiak, K, van der Pal, HJH, Ronckers, CM, De Vries, ACH, Van der Heiden-van Der Loo, M, Hollema, N, van den Berg, M, Loonen, J, Grootenhuis, MA, Bresters, D, Versluys, AB, van Dulmen-den Broeder, E, van den Heuvel-Eibrink, MM, van Leeuwen, FE, Neggers, SJCMM, Van Santen, HM, Hawkins, M, Hauptmann, M, Yoneoka, D, Korevaar, JC, Tissing, WJE & Kremer, LCM 2024, 'The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study', Cancer, vol. 130, no. 8, pp. 1349-1358. https://doi.org/10.1002/cncr.35148

The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study. / Streefkerk, Nina; Teepen, Jop C.; Feijen, Elizabeth A.M. et al.
In: Cancer, Vol. 130, No. 8, 15.04.2024, p. 1349-1358.

Research output: Contribution to journal › Article › Academic › peer-review

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 aquestionnaire 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 18.5years 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 aquestionnaire 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 18.5years 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.

UR - http://www.scopus.com/inward/record.url?scp=85179717570&partnerID=8YFLogxK

U2 - 10.1002/cncr.35148

DO - 10.1002/cncr.35148

M3 - Article

AN - SCOPUS:85179717570

SN - 0008-543X

VL - 130

SP - 1349

EP - 1358

JO - Cancer

JF - Cancer

IS - 8

ER -

Streefkerk N, Teepen JC, Feijen EAM, Jóźwiak K, van der Pal HJH, Ronckers CM et al. The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study. Cancer. 2024 Apr 15;130(8):1349-1358. Epub 2023 Dec 15. doi: 10.1002/cncr.35148