The Dutch LATER physical outcomes set for self-reported data in survivors of childhood cancer

Nina Streefkerk*, Wim J. E. Tissing, Margriet van der van der Loo, Elizabeth A. M. (Lieke) Feijen, Eline van Dulmen-den Broeder, Jacqueline J. Loonen, Helena J. H. van der Pal, Cecile M. Ronckers, Hanneke M. van Santen, Marleen H. van den Berg, Renee L. Mulder, Joke C. Korevaar, Leontine C. M. Kremer

*Corresponding author for this work

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Abstract

Purposes Studies investigating self-reported long-term morbidity in childhood cancer survivors (CCS) are using heterogeneous outcome definitions, which compromises comparability and include (un)treated asymptomatic and symptomatic outcomes. We generated a Dutch LATER core set of clinically relevant physical outcomes, based on self-reported data. Clinically relevant outcomes were defined as outcomes associated with clinical symptoms or requiring medical treatment. Methods First, we generated a draft outcome set based on existing questionnaires embedded in the Childhood Cancer Survivor Study, British Childhood Cancer Survivor Study, and Dutch LATER study. We added specific outcomes reported by survivors in the Dutch LATER questionnaire. Second, we selected a list of clinical relevant outcomes by agreement among a Dutch LATER experts team. Third, we compared the proposed clinically relevant outcomes to the severity grading of the Common Terminology Criteria for Adverse Events (CTCAE). Results A core set of 74 self-reported long-term clinically relevant physical morbidity outcomes was established. Comparison to the CTCAE showed that 36% of these clinically relevant outcomes were missing in the CTCAE. Implications for Cancer Survivors This proposed core outcome set of clinical relevant outcomes for self-reported data will be used to investigate the self-reported morbidity in the Dutch LATER study. Furthermore, this Dutch LATER outcome set can be used as a starting point for international harmonization for long-term outcomes in survivors of childhood cancer.

Original languageEnglish
Pages (from-to)666-676
Number of pages11
JournalJournal of cancer survivorship-Research and practice
Volume14
Issue number5
DOIs
Publication statusPublished - Oct-2020

Keywords

  • Childhood cancer survivors
  • Long-term morbidity
  • Outcome assessment
  • Outcome definition
  • LONG-TERM SURVIVORS
  • ACUTE LYMPHOBLASTIC-LEUKEMIA
  • HEALTH-RELATED OUTCOMES
  • ACUTE MYELOID-LEUKEMIA
  • ADULT SURVIVORS
  • FOLLOW-UP
  • EWING SARCOMA
  • BRAIN-TUMORS
  • CHILDREN
  • RISK

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