Clinical Trials

Patient Inclusion Criteria:

• Adolescents and young adults age 12 to 21 years at time of consent who have had NYHA Class II or higher heart failure in the preceding two years.
• Actively being followed by a pediatric heart failure specialist with at least one visit in the past year, or actively being followed by a pediatric cardiologist with Heart Failure as an active diagnosis and history of consultation with a pediatric heart failure specialist.
• English speaking.
• Inpatient or outpatient.
• Any etiology of heart failure including but not limited to cardiomyopathy, myocarditis, and congenital heart disease, unless mentioned in Exclusion Criteria.
• May have systolic or diastolic heart failure, or Fontan/single ventricle heart failure.
• May have had advanced cardiac therapies including pacemakers, ICDs, ventricular assist devices, or cardiac transplant as long as other Inclusion Criteria are met.

Caregiver Inclusion Criteria:

• Parent(s)/guardian(s)/caregiver(s) of participating adolescent/young adult subjects with heart failure.
• Age 18 or older.
• English speaking.
• Significant co-morbidities that may greatly impact their ability to distinguish symptoms of heart failure, such as: muscular dystrophy, active malignancy, or primary non-cardiac organ failure (e.g., renal failure with uremic cardiomyopathy).
• Clinical condition that would interfere with their ability to participate in a focus group or interview (e.g., severe developmental delay or other cognitive impairment).

Patient Exclusion Criteria: 

• Significant co-morbidities that may greatly impact their ability to distinguish symptoms of heart failure, such as: muscular dystrophy, active malignancy, or primary non-cardiac organ failure (e.g., renal failure with uremic cardiomyopathy).
• Clinical condition that would interfere with their ability to participate in a focus group or interview (e.g., severe developmental delay or other cognitive impairment).

Caregiver Exclusion Criteria:

• Clinical condition that would interfere with their ability to participate in a focus group or interview (e.g., severe developmental delay or other cognitive impairment).