Dataset Information

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

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.

SUBMITTER: Streefkerk N

PROVIDER: S-EPMC7473963 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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

Streefkerk Nina N Tissing Wim J E WJE van der Heiden-van der Loo Margriet M Lieke Feijen Elizabeth A M EAM van Dulmen-den Broeder Eline E Loonen Jacqueline J JJ van der Pal Helena J H HJH Ronckers Cécile M CM van Santen Hanneke M HM van den Berg Marleen H MH Mulder Renée L RL Korevaar Joke C JC Kremer Leontine C M LCM

Journal of cancer survivorship : research and practice 20200503 5

<h4>Purposes</h4>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.<h4>Methods</h4>First, we ...[more]

PMID: 32363495

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Project description:This study provides the first objective data documenting neurocognitive impairment in long-term survivors of childhood osteosarcoma.To examine neurocognitive, neurobehavioral, emotional, and quality-of-life outcomes in long-term survivors of childhood osteosarcoma.Cross-sectional cohort study at an academic research hospital, with prospective treatment and chronic health predictors. Outcome data were collected from June 2008 to August 2014. Data analysis was completed in April 2015. Survivors of osteosarcoma recruited from the St Jude Lifetime Cohort Study were compared with community controls.Neurocognitive function, neurobehavioral symptoms, emotional distress, and quality of life. Outcomes were examined in relation to pharmacokinetic indices of methotrexate exposure and current chronic health conditions, which were assessed through medical examination and coded according to Common Terminology Criteria for Adverse Events, Version 4.03.Eighty survivors of osteosarcoma (mean [SD] age, 38.9 [7.6] years; time since diagnosis, 24.7 [6.6] years; 42% female) were compared with 39 community controls (age, 39.0 [11.7] years; 56% female). Survivors demonstrated lower mean scores in reading skills (-0.21 [95% CI, -0.32 to -0.10] vs 0.05 [95% CI, -0.13 to 0.23]; P =?.01), attention (-0.78 [95% CI, -1.32 to -0.24] vs 0.24 [95% CI, -0.07 to 0.55]; P =?.002), memory (-0.24 [95% CI, -0.48 to 0] vs 0.27 [95% CI, -0.08 to 0.62]; P =?.01), and processing speed (-0.15 [95% CI, -0.35 to 0.05] vs 0.74 [95% CI, 0.44 to 1.03]; P <?.001). Results of pharmacokinetic analysis showed that high-dose methotrexate maximum plasma concentration (estimate = 0; P =?.48), median clearance (estimate =?-0.11; P =?.76), and median/cumulative exposure (estimate = 0; P =?.45) were not associated with neurocognitive outcomes. Any grade 3 or 4 Common Terminology Criteria for Adverse Events cardiac, pulmonary, or endocrine condition was associated with poorer memory (t = 2.93; P =?.006) and slower processing speed (t?=?3.03; P?=?.002). Survivor-reported poor general health was associated with decreased sustained attention (estimate = 0.24; P =?.05) and processing speed (estimate = 0.34; P =?.005).Long-term survivors of osteosarcoma are at risk for neurocognitive impairment, which is related to current chronic health conditions and not to original treatment with high-dose methotrexate. Prospective longitudinal studies are needed to identify onset and progression of impairment to inform optimal interventions.

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Dataset Information

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

Publications

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

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