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Benefits and burdens of risk management for young people with inherited cancer: A focus on Li-Fraumeni syndrome.
- Source :
-
Australian journal of general practice [Aust J Gen Pract] 2021 Aug; Vol. 50 (8), pp. 538-544. - Publication Year :
- 2021
-
Abstract
- Background and Objectives: Discussing population-based cancer risk and screening is common in general practice. Patients with an inherited cancer syndrome, however, may need more nuanced discussions. Li-Fraumeni syndrome (LFS) is a rare, inherited cancer syndrome that affects many organ systems from birth and requires intensive, whole-body cancer risk management. The aim of this study was to explore the risk management experiences of young people (aged 15-39 years) with, or at risk of, LFS.<br />Method: Using an interpretive description design, semi-structured interviews were conducted with young people diagnosed with, or at risk of, LFS from across Australia. Interview transcripts were analysed with team-based, codebook thematic analysis.<br />Results: Thirty young people (mean age 25.5 years) participated. Participants described intensive screening and risk-reducing mastectomy (for women) as their 'best shot' to control their cancer risks with LFS. Engaging in these options as a young person came with a slew of psychosocial implications.<br />Discussion: General practitioners may help to improve care for young people with inherited cancer syndromes by acknowledging the benefits and complex burdens of their risk management.
Details
- Language :
- English
- ISSN :
- 2208-7958
- Volume :
- 50
- Issue :
- 8
- Database :
- MEDLINE
- Journal :
- Australian journal of general practice
- Publication Type :
- Academic Journal
- Accession number :
- 34333565
- Full Text :
- https://doi.org/10.31128/AJGP-04-21-5954