Concordance between paediatric self-reports and parent proxy reports on fatigue: A multicentre prospective longitudinal study

To investigate the degree of concordance on fatigue assessment between children and adolescents with cancer and their parents, and its changes over time. Multicentre longitudinal study. Data from 134 dyads were analysed. The mean age of patients was 11.7 years; caregivers had a mean age of 44.1 years. Almost 90% of patients already reported mild or moderate fatigue at the time of diagnosis, decreasing to 69.7% after one year. Concordance on the total fatigue improved over time for the total sample, moving from moderate at the time of diagnosis to good concordance after one year. This was the first study with a longitudinal design investigating concordance between paediatric self-reports and parent proxy reports on fatigue. It showed how concordance between proxies and patients changed over time reaching a good level after one year from the cancer diagnosis. •Fatigue is a prevalent problem for children and adolescents diagnosed with cancer.•The prevalence and intensity of fatigue decrease over time.•Concordance between proxy and patient on fatigue level is higher one year after diagnosis.