Symptom Science in Pediatric Oncology.

Abstract

Objectives: to describe the historical evolution of symptom science in pediatric oncology from single symptom measurement to standardizing patient- and caregiver-reported outcomes in clinical trials, including underlying theoretical guidance, contributions of advanced analytics, and the state of integration of the science into clinical practice. Developmental considerations are also described.

Methods: historical and current peer-reviewed literature including original research reports and reviews as well as clinical practice guidelines were reviewed and findings extracted.

Results: Standardized patient-, caregiver-, and clinician-reported symptom and treatment toxicity outcomes are now embedded in certain clinical trials of the largest pediatric oncology cooperative group. Though the 3 reports can be discordant, findings indicate the willingness of patients, caregivers and clinicians to report on symptoms and toxicities. Concurrently, advanced analytics have revealed the existence of patient subgroups in terms of symptom experiences. This latter finding combined with the use of estimated minimally important differences, makes possible the potential of tailoring symptom management. Embedding symptom reports in clinical practice in a standardized manner, including real time reports and care, is a future milestone in pediatric oncology symptom science.

Conclusions: Three symptom perspectives, the patient, family caregiver, and clinician, are essential to accurately measure and manage the impact of cancer therapies on patient symptoms, treatment tolerability, function, and quality of life.

Implications for nursing practice: Standardizing patient, family, and clinician reports will provide important research and clinical care advances. Embedding these 3 perspectives in nursing practice in a standardized approach is the next milestone for symptom science in pediatric oncology.