Improving symptom control and reducing toxicities for pediatric patients with hematological malignancies

Abstract

The continuing improvement in pediatric cancer survival over time is largely attributable to the availability of intensive therapies. Increasing attention has been focused on addressing the physical and psychosocial impacts of cancer and cancer treatments. Evidence from adult oncology suggests that routine symptom screening and feedback to health care providers can improve patient-clinician communication, reduce distress, and improve quality of life and may even increase survival. Many questions remain regarding implementation of routine symptom screening in pediatric cancer care, including the best symptom assessment instrument and the reporter type and feasibility of integration with electronic health records (EHRs). Nonsymptom adverse events are also important, for both routine clinical care and adverse event reporting for patients enrolled in clinical trials. However, traditional mechanisms for reporting adverse events lead to substantial inaccuracies and are labor intensive. An automated approach for abstraction from EHRs is a potential mechanism for improving accuracy and reducing workload. Finally, identification of symptom and nonsymptom toxicities must be paired with prophylactic and therapeutic strategies. These strategies should be based on clinical practice guidelines that synthesize evidence and use multiprofessional, multidisciplinary expertise to place this evidence in clinical context and create recommendations. How best to implement clinical practice guidelines remains a challenge, but EHR order sets and alerts may be useful. In summary, although survival is excellent for pediatric patients receiving cancer therapies, more focus is needed on identification of symptoms and nonsymptom toxicities and their management. The EHR may be useful for promoting better supportive care through these mechanisms.

A systematic review of early phase studies for children and young people with relapsed and refractory rhabdomyosarcoma: The REFoRMS‐SR project

“…This is potentially most obvious in the variation in how adverse events are described; variability which seems even more challenging given the principal intent of early phase studies. Newer approaches with patient‐reported‐adverse‐outcomes and integration of electronic patient record capture methods could harmonize and improve detection 15 . A core outcome set for early phase studies in pediatric, teenage and young adult cancer would ensure that reporting priorities of key stakeholders are met, reduce selective reporting of certain outcomes and improve evidence syntheses in the future.…”

“…Newer approaches with patient-reported-adverse-outcomes and integration of electronic patient record capture methods could harmonize and improve detection. 15 A core outcome set for early phase studies in pediatric, teenage and young adult cancer would ensure that reporting priorities of key stakeholders are met, reduce selective reporting of certain outcomes and improve evidence syntheses in the future. The International Childhood Cancer Outcome Project has already started work in this area, by developing core outcome sets to measure the quality of survival for 17 common childhood cancer subtypes including rhabdomyosarcoma, based on outcomes that are valued by patients.…”