Journal article

Benefits and burdens of risk management for young people with inherited cancer A focus on Li-Fraumeni syndrome

Rowan Forbes Shepherd, Louise A Keogh, Allison Werner-Lin, Martin B Delatycki, Laura E Forrest

AUSTRALIAN JOURNAL OF GENERAL PRACTICE | ROYAL AUSTRALIAN COLLEGE GENERAL PRACTITIONERS | Published : 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. 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 ..

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