Living with rare genetic disease during the COVID-19 pandemic: A qualitative study of adolescents and young adults with Li-Fraumeni syndrome

Living with rare genetic disease during the COVID-19 pandemic: A qualitative study of adolescents and young adults with Li-Fraumeni syndrome

Background: The COVID-19 pandemic caused large-scale shifts in healthcare access and delivery that impacted the availability of routine care, such as cancer screening. Vulnerable populations, including those with rare cancer-prone genetic disease, faced considerable difficulties in managing their ca...

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Bibliographic Details
Main Authors: Allison Werner-Lin, Payal P. Khincha, Ashley S. Thompson, Camella Rising, Alix Sleight, Catherine Wilsnack, Patrick Boyd, Alexandra Feldman, Rowan Forbes Shepherd, Sharon A. Savage
Format: Article
Language:English
Published: Elsevier 2024-01-01
Series:Rare
Subjects:
Adolescents and young adults (AYA)
Inherited cancer predisposition syndromes
Li-Fraumeni syndrome
Pandemic
Telehealth
Mental health
Online Access:http://www.sciencedirect.com/science/article/pii/S2950008724000176
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http://www.sciencedirect.com/science/article/pii/S2950008724000176

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