P514: Patient attitudes in the context of receiving uncertain news

Genetics in Medicine Open 2026 Open access

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Authors: Jacqueline Les, Janessa Mladucky, Erin Baldwin, John Carey, David H. Viskochil, Ashlew Andrews, Rong Mao, Pınar Bayrak‐Toydemir, Mackenzie Fait, Lorenzo D. Botto
DOI: 10.1016/j.gimo.2026.104006
Cited by: 0

Abstract

Caregivers of children with undiagnosed or rare conditions frequently experience prolonged diagnostic odysseys characterized by inconclusive results and enduring uncertainty. Communication in the context of providing and supporting those facing uncertainty has a lasting impact on caregiver trust, emotional well-being, and engagement in care. While provider communication after definitive diagnoses is well described, caregiver perspectives amid ongoing uncertainty remain understudied.

Fields of Study & Subjects

Patient-Provider Communication in Healthcare Genomics and Rare Diseases Palliative Care and End-of-Life Issues

Publication details

Journal / source
Genetics in Medicine Open
Volume
4
Pages
104006–104006
Publication date
1 January 2026
Language
EN