CARDIOMYOPATHY SPECIALTY CENTERS
Cardiomyopathy is a rare and variable disease in children. It can be challenging to find the right specialist and get the proper evaluation and care. CCF encourages families to research their available options for specialized care. A treatment provider that has experience in all forms of pediatric cardiomyopathy and approaches care in a comprehensive manner will ensure the best possible health outcome.
Selecting a Doctor and Hospital
Selecting your child's doctor and hospital is an important decision. Because cardiomyopathy in children is rare, cardiologist have varying degrees of experience treating children with the disease. A pediatric cardiologist with expertise in cardiomyopathy and is affiliated with a research driven medical center is recommended. Ideally, the hospital has a well-informed pediatric cardiology and genetics team and sees a large number of patients with cardiomyopathy.
While cardiomyopathy does affect adults, treatments for children may differ. Working with pediatric specialists will ensure that special considerations for children are taken into account when developing a treatment plan.
When selecting a center, there are several important factors to keep in mind. Centers will vary in size, patient volume, staff training, and special services.
- Location of center and accessibility
- Pediatric heart failure, cardiomyopathy, and heart transplant program
- Clinical services offered
- Availability of pediatric specialists
- Number of clinics per week
- Coordination of care
- Number of cardiomyopathy patients managed
- Education and training of the cardiology team
- Cardiovascular genetics and/or genetics staff
- Insurance and payment plans
Importance of Comprehensive Care
With a complex disease like cardiomyopathy, a comprehensive care approach ensures the best outcome. This approach involves a team of medical and healthcare professionals who work together to combine their knowledge and expertise to evaluate and treat the child. The team may include a pediatric cardiologist, geneticist, neurologist, pediatric surgeon, and, when necessary, an electrophysiologist and the heart transplant team. A social worker, child life specialist, nutritionist, physical or occupational therapist, and child psychologist may also be involved to assist with other needs.
Cardiomyopathy Centers of Care
The Children's Cardiomyopathy Foundation recognizes hospitals that offer a high level of cardiac care through its Cardiomyopathy Centers of Care Program. Hospitals that meet CCF's standards of care are usually academic teaching hospitals that engage in cardiomyopathy research and follow a comprehensive care approach to managing their patients. Below is a list of recognized centers of care, and center profiles are available through CCF's online community, CCF Connect.
To access these profiles, please register first and then download center profiles from CCF Connect under the "Share/File Cabinet" tab.
Questions to ask
Once you have arranged an appointment, it is helpful to think of questions you might want to ask about your child's diagnosis and treatment plan. For a list of suggested physician questions, click here.