Coping with Heart Disease – A Study of Adolescents and Adults

Protocol Description

This study is being done to determine coping mechanisms and health-related quality of life among adolescent and adult patients with congenital heart disease. These issues, including gender differences, lifestyle factors and cardiovascular risk, have not been extensively studied among this population, even though increasing numbers of patients in the United States and worldwide are reaching adulthood with simple as well as congenital heart disease. Results obtained from this study may give doctors an improved understanding of these issues within the congenital heart disease population, particularly in the major coping years between the ages of 13 and 17.

Eligibility Criteria

This study is open to males and females, ages 13 and up, who have a congenital heart disease and are being seen on an outpatient basis by the UPMC Heart and Vascular Institute at either the Adult Congenital Heart Disease Center of Children’s Hospital of Pittsburgh of UPMC, or UPMC Presbyterian Cardiovascular Services. 
Males and Females: Ages 13 and up

Requirements

Participation involves a series of questionnaires that can be completed in connection with routine care visits. The questionnaires are designed to be finished within 30-minutes and examine factors such as patients’ perceived stress and anxiety and methods of coping, as well as patients’ opinions about their own health and well being. Younger participants will repeat the questionnaires on subsequent visits, approximately annually, through the age of 18. Adult participants will complete the questionnaires one time.
Visits: Up to 5, done during routine care visits
Duration: Up to 5 years, depending on age at enrollment

Status: Open to Enrollment

Contact Information

For more information about the study or enrollment, please contact:
Morgan LeSuer-Mandernack, study coordinator
412-692-6516