Changing pediatric cancer care: development and implementation of electronic patient and parent reported outcomes

Being diagnosed with childhood cancer remains an obvious stressful event for the entire family. Early screening and monitoring of patient and parent reported outcomes (PROs) is therefore internationally endorsed. The KLIK method is an online innovative tool (www.hetklikt.nu) to monitor and discuss electronic PROs (ePROs) in clinical practice. Earlier pediatric studies have shown the beneficial effects of using the KLIK method. Yet, translating research results into clinical practice remains a challenge. The general objectives of this thesis were to (1) develop reliable and valid ePRO measures for children with cancer and their families, and (2) implement ePROs in pediatric cancer care and assess factors that determine the implementation process. In light of studying patient and parent ePROs through different developmental stages, there was a need for representative Dutch reference data for several ePRO questionnaires. Reliable and valid questionnaires were developed and can now be used in research and in pediatric cancer care. Furthermore, this thesis was the first to determine the fidelity and influencing factors for the real-world implementation of ePROs in multi-center pediatric cancer care. This knowledge is important, because it makes an additional step—from a highly controlled research environment to actual implementation in standard pediatric oncology care. It was shown that the implementation of ePROs is generally feasible and internationally valued, but crucial implementation barriers remain present. For the sustainable integration of PROs in clinical practice, joint efforts should be made to reach a common set of PRO topics and barriers should be tackled with adequate implementation strategies.