The goal is to determine how lifestyle and exercise impact the well-being of individuals with hypertrophic cardiomyopathy (HCM) and long QT syndrome (LQTS). Ancillary study Aim: To understand how the coronavirus epidemic is impacting psychological health and quality of life in the LIVE population
Yale is the central site for this multicenter study. Patients with HCM and LQTS will be recruited via high-volume HCM and LQTS sites, patient-groups, and websites. Information about exercise participation will be acquired via interview and online instruments at enrollment and every six months for three years. Quality of Life questionnaires will be filled out at enrollment and at the end of the study. Participants will receive a Fitbit (pedometer) and will wear it initially for two weeks and then one week every three months. The Fitbit is used for assessment of exercise level only. Clinical records will be obtained from treating physicians. Participants will also be asked to call the central site if they experience syncope, appropriate ICD (implantable cardioverter defibrillator) shock, or resuscitated arrest. Information regarding the patient's activity at the time of event will then be obtained by phone interview. Follow-up clinical records will be obtained as indicated to corroborate endpoints. The Ancillary study is optional. This will include all of the baseline questionnaires,as well as selected questions from the Epi-Pandemic Impacts Inventory.
Study Type
OBSERVATIONAL
Enrollment
4,299
To compare composite risk of death, cardiac arrest, ventricular arrhythmias, or syncope in individuals with HCM or LQTS who are participating in moderate or vigorous exercise and in sedentary individuals.
Collect information for death, resuscitated arrest, syncope, appropriate ICD shock , during exercise or at other times, through records from the provider and patient interviews
Time frame: Five years
Emotional Quality of Life assessed using Pediatric Cardiac Quality of Life Inventory (Pcqli)
Will assess using Pediatric Cardiac Quality of Life Inventory (Pcqli)
Time frame: Five years
Physical Quality of Life assessed using Pediatric Quality of Life Inventory (PedsQL)
Will assess using Pediatric Quality of Life Inventory (PedsQL)
Time frame: Five Years
Physical Quality of Life assessed using Health Status Questionnaire (SF36) Quality of Life for Adults
Will assess using Health Status Questionnaire (SF36) Quality of Life for Adults
Time frame: Five Years
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
University of Arizona
Tucson, Arizona, United States
University of California Irvine
Orange, California, United States
University of California, San Diego (Rady's Children's Hospital)
San Diego, California, United States
Stanford
Stanford, California, United States
Yale University
New Haven, Connecticut, United States
Children's National
Washington D.C., District of Columbia, United States
Miami Children's (Nicklaus Children's Hospital)
Miami, Florida, United States
Lurie Children's
Chicago, Illinois, United States
Indiana University
Indianapolis, Indiana, United States
University of Iowa
Iowa City, Iowa, United States
...and 26 more locations