Journal article

Health professionals' practice for young people with, or at risk of, Li-Fraumeni syndrome: An Australasian survey

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

Journal of Genetic Counseling | WILEY | Published : 2019

Abstract

Li-Fraumeni syndrome (LFS), a rare cancer syndrome caused by pathogenic germline variants in TP53, has serious implications for adolescents and young adults (AYAs; aged 15-39 years). The early-onset and multi-organ cancer risk associated with LFS means health professionals must concurrently contend with the developmental needs of individuals who are diagnosed from a young age, and recent changes in practice due to advances in whole-body cancer surveillance. To help understand how current practice meets the developmental needs of AYAs with, or at risk of, LFS, we conducted a national online survey to explore the experiences of health professionals who care for this population in Australia and..

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