Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents.

ABSTRACT:

Importance

Despite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups.

Objective

To characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.

Design, setting, and participants

Cross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children's hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantatio

SUBMITTER: Cousino MK 

PROVIDER: S-EPMC10163392 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature