Saturday, October 28, 2023
End-of-Life Discussions With Patients and Caregivers Affected By Neurogenetic Diseases
Anne-Claire D, Coarelli G, Heinzmann A, Verdon B, Manuella L, Petit E, Pierron L, Levy-Soussan M, Durr A, Gargiulo M, Ewenczyk C. End-of-Life Discussions With Patients and Caregivers Affected By Neurogenetic Diseases. Neurol Clin Pract. 2023 Dec;13(6):e200199. doi: 10.1212/CPJ.0000000000200199. Epub 2023 Oct 16. PMID: 37854177; PMCID: PMC10581072.
DIRAGENE is an observational, cross-sectional, mixed-methods study with a patient-centered component and a primary caregiver-centered component. Observations include disease severity, psychosocial, and emotional scales; in-house questionnaires; and semidirected interviews.
