EXPLORING THE RELATIONSHIP BETWEEN FAMILY COMMUNICATION AND SEVERITY OF HIGHLY HERITABLE CARDIAC DISEASES

John Michael Purdon Faculty Mentor: Lisa Shah University of Pittsburgh School of Nursing 3500 Victoria Street Pittsburgh Pennsylvania 15213

Genetic cardiac diseases such as Long QT Syndrome (LQTS) and Hypertrophic Cardiomyopathy (HCM) have a risk for sudden death. HCM and LQTS are highly heritable, placing relatives of affected individuals at high risk for developing the same disease. Therefore, it is essential that all relatives are aware of their increased risk in order to seek appropriate screening and treatments. Relatives’ awareness of disease risk relies on communication from affected family members. However, half of at-risk relatives are not told about their risk, and do not have the opportunity to be appropriately screened and to seek preventative treatments. Disease factors, such as disease severity, are suggested to contribute to communication about disease risk in families, although the role of disease severity in communication about HCM/LQTS risk is poorly understood. The purpose of this study is to examine the relationship between severity of the disease symptoms experienced by individuals and communication to their family members. Our sample includes over 30 individuals with LQTS or HCM. Data was collected through semi-structured interviews, 3-generation family pedigrees, and surveys. Frequencies and percentages of relatives in each family who were told about their HCM/LQTS risk were calculated. Content analysis of qualitative interview transcripts was completed through multiple rounds of coding. In the first round of coding, we identified major content codes including participant’s diagnosis experience and day-to-day symptoms. In the second round of coding we reviewed the text within each major content code and developed second-level codes to capture details. Then we compared the severity of the disease symptoms experienced by each participant with the extent of communication to their relatives to examine how severity of disease symptoms was related to communication of HCM/LQTS risk to relatives. Our findings will be useful for healthcare professionals helping patients navigate communication about genetic cardiac risk in their families.


Additional Abstract Information

Presenter: John Michael Purdon

Institution: University of Pittsburgh School of Nursing

Type: Poster

Subject: Nursing

Status: Approved


Time and Location

Session: Poster 3
Date/Time: Thu 2:20pm-3:20pm
Location: Wellness Center - Tripod 56 Side C