Journal
PSYCHO-ONCOLOGY
Volume 31, Issue 10, Pages 1692-1699Publisher
WILEY
DOI: 10.1002/pon.6016
Keywords
cancer; cancer predisposition; genetic counseling; informed consent; oncology; pediatric oncology; psycho-oncology
Funding
- Stichting Kinderen Kankervrij
Ask authors/readers for more resources
This qualitative study examines the motives, knowledge, and views of families regarding germline genetic sequencing in pediatric oncology. The findings suggest that while most families have positive experiences with sequencing, there is room for improvement in the timing of consent and parents' understanding of genetic concepts.
Objective: In pediatric oncology, large-scale genetic sequencing contributes to the identification of cancer predisposition, which can facilitate surveillance and family counseling. Our qualitative study explores families' motives, knowledge, and views regarding germline genetic sequencing to improve future counseling and support. Methods: Semi-structured interviews were conducted with parents of children with renal tumors participating in a national center, germline sequencing study. An inductive thematic analysis approach was used. Twenty nine parents participated, 17 mothers and 12 fathers. The median age of the affected children was 4 years. Results: Parents were generally positive about sequencing and reported a combination of individual and altruistic motives to participate. Some families counseled about sequencing shortly after cancer diagnosis felt overwhelmed. Many parents had difficulties distinguishing between panel and exome-wide analysis. Families in which no predisposition was identified felt reassured. Most families did not experience distress after a predisposition was disclosed, although sometimes stress following disclosure of a predisposition added to pre-existing (cancer-related) stress. Conclusions: Even though families reported positive experiences with germline genetic sequencing to detect cancer predisposition, timing of consent for sequencing as well as parents' understanding of genetic concepts can be further improved.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available