Understanding the Impact of Pediatric Cancer Predisposition
Mentor Name: Lisa Schwartz
This proposal aims to support the research training of undergraduate, Margaret Jankowski, as she assists with our ALSF-funded grant, Impact of Pediatric Germline Testing in a Pediatric Cancer Predisposition Clinic. Specifically, the goal is for Margaret to gain experience conceptualizing a research idea, collecting and analyzing data, and writing and presenting the results. This study on which Margaret 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, Margaret will partner with Dr. Schwartz to evaluate the adjustment of parents of children testing positive for a cancer predisposition, as well as teen patients. Margaret will specifically evaluate a part of the data by examining change between scores on adjustment (distress, impact) soon after return of results to 6 months later. She will also assist with conducting and coding qualitative interviews with parents of children with positive results indicating a cancer predisposition. She will gain valuable experience with identifying themes in the interviews and integrating the results with the qualitative scores. Further, she will examine differences in adjustment and impact for mothers, fathers, and teen patients. We hypothesize that distress will be high after return of results, but will lower over time as families adjust to a “new normal”. Interviews will reveal details about impact and coping among the family members. The results will help to inform future interventions to address distress, coping, and cancer control behaviors for those with positive results.
