Hypertrophic Cardiomyopathy, Long QT Syndrome
Conditions
Keywords
Hypertrophic Cardiomyopathy (HCM), Long QT Syndrome (LQTS)
Brief summary
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
Detailed description
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.
Interventions
None listed
Sponsors
National Institutes of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Yale University
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
8 Years to 60 Years
Healthy volunteers
No
Inclusion criteria
* Individuals with Hypertrophic Cardiomyopathy or Long QT Syndrome
Exclusion criteria
* Individuals with Hypertrophic Cardiomyopathy with systolic or diastolic heart failure which precludes vigorous exercise will not be enrolled (NYHA III/IV)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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. | Five years | Collect information for death, resuscitated arrest, syncope, appropriate ICD shock , during exercise or at other times, through records from the provider and patient interviews |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Emotional Quality of Life assessed using Pediatric Cardiac Quality of Life Inventory (Pcqli) | Five years | Will assess using Pediatric Cardiac Quality of Life Inventory (Pcqli) |
| Physical Quality of Life assessed using Pediatric Quality of Life Inventory (PedsQL) | Five Years | Will assess using Pediatric Quality of Life Inventory (PedsQL) |
| Physical Quality of Life assessed using Health Status Questionnaire (SF36) Quality of Life for Adults | Five Years | Will assess using Health Status Questionnaire (SF36) Quality of Life for Adults |
Other
| Measure | Time frame | Description |
|---|---|---|
| Epi-Pandemic Impacts Inventory (select questions) | 4 months | Will assess COVID 19 infection in themselves/family/friends, and impact on jobs and financial status. |
Countries
Australia, Canada, New Zealand, United Kingdom, United States
Outcome results
None listed