The Dutch LATER physical outcomes set for self-reported data in survivors of childhood cancer
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The Dutch LATER physical outcomes set for self-reported data in survivors of childhood cancer Nina Streefkerk 1,2 & Wim J. E. Tissing 2,3 & Margriet van der Heiden-van der Loo 4 & Elizabeth A. M. (Lieke) Feijen 1,2 & Eline van Dulmen-den Broeder 2,5 & Jacqueline J. Loonen 6 & Helena J. H. van der Pal 2 & Cécile M. Ronckers 1,2 & Hanneke M. van Santen 2,7 & Marleen H. van den Berg 5 & Renée L. Mulder 2 & Joke C. Korevaar 8 & Leontine C. M. Kremer 1,2 Received: 23 November 2019 / Accepted: 25 March 2020 # The Author(s) 2020
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. Keywords Childhood cancer survivors . Long-term morbidity . Outcome assessment . Outcome definition
Introduction The vast majority of children diagnosed with cancer nowadays will achieve long-term survival [1, 2]. Those childhood cancer survivors (CCS) are a growing, vulnerable group of individuals
who are at risk of developing long-term morbidity due to previous treatment for cancer in early stages of life. Knowledge on the burden of long-term morbidity in CCS, its underlying types of health conditions and its risk factors, has been presented in various studies during the past decades [3–5].
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11764-020-00880-0) contains supplementary material, which is available to authorized users. * Nina Streefkerk [email protected]
4
Dutch Childhood Oncology Group, Utrecht, The Netherlands
5
Department of Pediatric Oncology/Hematology, Amster
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