What are the daily effects of familial hypercholesterolemia and other inherited heart diseases on patients?

Public project summary

This study will assess the concerns of individuals with Familial Hypercholesterolemia both qualitatively and quantitatively. For the former, structured interviews will be conducted for individuals with FH. For the latter, analyses of data taken from a national patient registry of FH called CASCADE FH will be performed. This research will demonstrate what the patients are experiencing and what their primary concerns are through a firsthand perspective. FH poses complex psychosocial challenges for families. These include: financial implications, the risk of sudden death, grief related to the sudden death of a loved one, possible activity restrictions, and inherited risk to other family members.