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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Autors principals:	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:	Artigo
Idioma:	Inglês
Publicat:	Elsevier 2024-12-01
Col·lecció:	SSM: Qualitative Research in Health
Matèries:	Uncertainty Telomere biology disorder Dyskeratosis congenita Telomere Qualitative Genetic disease
Accés en línia:	http://www.sciencedirect.com/science/article/pii/S2667321524000957
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