Pediatric Precision Oncology: Parent and Adolescent Experiences
In recent years, pediatric cancer researchers have set out to understand how a new genetic technology, called next generation sequencing (NGS), can be incorporated into clinical care for pediatric patients with difficult-to-treat cancers. NGS provides information about the genome (all the genes) of a patient's tumor and of their healthy cells. The goal of NGS is to provide precision medicine to patients: to clarify a patient's specific diagnosis, to identify their tumor's specific drug targets and to identify whether that patient and their family has an underlying predisposition for developing cancer. However, there are still many challenges associated with the use of NGS – the analysis takes time and the results may be unhelpful, of uncertain significance, or unexpected.
Because these tools will be a standard part of clinical pediatric oncology care in the near future, the objective of this study is to characterize patients' and parents' experience with NGS. We propose to interview adolescent patients and parents, in order to explore four main questions: 1. How do participants understand NGS and what are their information needs? 2. How do participants perceive the value of NGS and what are their expectations? 3. Do patients and caregivers experience excess worry and distress when they participate in NGS? 4. What kinds of actions do participants take about their health, in response to their results? The rich information we gather from these participants will allow us to generate recommendations to guide patient-centered delivery of NGS in pediatric clinical oncology care.
Co-Investigators: Maru Barrera, PhD, C. Psych, Bailey Gallinger, MSc, CGC, Brittney Johnstone, MSc, CGC, CCGC, David Malkin, MD, FRCPC