Treatment decision making for adolescents with familial hypercholesterolemia: Role of family history and past experiences.

ABSTRACT:

Background

Adolescents and young adults (AYAs) with familial hypercholesterolemia (FH) are at high risk for underdiagnosis and inadequate treatment. Yet, little is known about the factors that influence the medical decision making of AYAs with FH and their families.

Objective

This study explores how family medical history, family narratives of medical experiences, and AYA medical experiences together function as "experiential evidence" and influence screening and treatment decisions.

Methods

Twenty-four parents and AYAs affected by FH from a pediatric preventive cardiology practice responded to a survey and a semistructured qualitative interview. Transcribed interviews were analyzed using a modified grounded theory approach. Study design, instruments, and interpretati

SUBMITTER: Mackie TI 

PROVIDER: S-EPMC6594829 | biostudies-literature | 2015 Jul-Aug

REPOSITORIES: biostudies-literature