A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study

A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study

Background: Medical uncertainty may cause distress and challenge medical decision-making for patients with rare diseases and their caregivers. Few studies have examined the experience and management of medical uncertainty in rare disease and the dynamics of multiple medical uncertainty sources, issu...

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Main Authors: Emily E. Pearce, Alina Majid, Toniya Brown, Catherine Wilsnack, Camella Rising, Ashley S. Thompson, Rowan Forbes Shepherd, Arman Niknafs, Allison Werner-Lin, Melissa B. Gilkey, Kurt M. Ribisl, Sadie P. Hutson, Paul K.J. Han, Sharon A. Savage
Format: Article
Language:English
Published: Elsevier 2024-12-01
Series:SSM: Qualitative Research in Health
Subjects:
Uncertainty
Telomere biology disorder
Dyskeratosis congenita
Telomere
Qualitative
Genetic disease
Online Access:http://www.sciencedirect.com/science/article/pii/S2667321524000957
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