Evaluating genetic and genomic sequencing knowledge from parents and young adult cancer survivors.

2016 
1579Background: Increasing utilization of clinical comprehensive sequencing (CS) in pediatric oncology suggests that patients and/or their caregivers will need to understand the value and limitations of CS before undergoing testing. The Precision in Pediatric Sequencing Knowledge Questionnaire (PIPseqKQ) was developed to assess CS and genetic knowledge in pediatric oncology. Methods: The PIPseqKQ assesses 3 knowledge domains: general genetic concepts (GC, 7 items), genetic concepts related to health and cancer (HC, 12 items), and whole genome/exome sequencing concepts (SC, 16 items). The paper and pencil questionnaire was administered to parents or young adult cancer survivors > 1 year off-therapy. Health literacy was assessed using The Newest Vital Sign. Results: 91 participants completed the PIPseqKQ: 71% (n = 65) parents, 29% (n = 26) young adults, 73% of respondents were female (n = 66), white (56%, n = 50) and non-Hispanic (64%, n = 58). The most common diagnosis was leukemia/lymphoma (62%, n = 56). ...
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