Impact of Pediatric Germline Testing in a Pediatric Cancer Predisposition
Mentor: Lisa Schwartz
This proposal aims to support the research training of undergraduate, Cristle Ike, as she assists with our ALSF-funded grant, Impact of Pediatric Germline Testing in a Pediatric Cancer Predisposition Clinic. Specifically, the goal is for Cristle to gain experience conceptualizing a research idea, collecting and analyzing data, and writing and presenting the results. This study on which Cristle will work is one of the few, to our knowledge, tracking a large cohort of families with children being tested for genetic cancer predisposition. Recent advances in testing and reduction in costs have led to increasing efforts to assess newly diagnosed youth with cancer or suspected predisposition (based on family history or physical findings) for germline predisposition. However, the increase in pediatric germline testing has exceeded the pace of research to understand how it impacts patients and families. As such, Cristle Ike will partner with Dr. Schwartz to evaluate the adjustment of parents of children receiving genetic testing for cancer predisposition. Cristle will evaluate a part of the data by examining change between scores on adjustment (distress, impact) at time of testing to the month after results are revealed and 6 months later. She will also assist with conducting and coding qualitative interviews with parents of children with positive results indicating a cancer predisposition. Further, she will examine demographic factors (minority status, income, age, gender, education) associated with adjustment. We hypothesize that distress will be high at time of testing and remain high for those with positive results of a cancer predisposition. We expect distress will subside for those with negative results, especially for those not currently being treated for cancer. The results will help to inform future interventions to address distress around testing and results, and to optimize information about coping and controllability for future care for those with positive results.