Our nurse coordinator, or clinician, will contact you by phone prior to the visit to obtain additional information, as well as provide additional information about your visit, and help schedule appointments. The nurse coordinator will also send you information by email to look over prior to your visit, including some forms that may be completed prior to arriving at the clinic.
Forms
The nurse coordinator, or clinician, will email you the following forms prior to your visit:
Clinic Intake Form: This form is helpful in telling us more about your child’s medical history and symptoms he/she is experiencing. Completing this form prior to your visit will be helpful in preparing to see your clinician.
Registries: We want to learn more about AAOCA and myocardial bridge as well as the well-being of children and teens with such conditions (parent’s and patient’s viewpoint), which is helpful in the care and programs we provide. Registries help our team study AAOCA and myocardial bridge, which provides guidance for the work-up and management of patients with these conditions. Families and patients are not required to participate in registries. Our nurse coordinator, or clinician, will tell you more about the registries over the phone and send you the forms for you to look over prior to the clinic visit. This does not result in additional tests nor change the recommendation made by the team. It is essential information that has helped us to learn more about AAOCA and myocardial bridge, which provides guidance to management based on data acquired.
Diagnostic imaging
The next step is diagnostic imaging, according to our clinical algorithm, which may include ECG (aka, EKG), echocardiogram, exercise stress test, CTA, and stress CMR. In very few cases of AAOCA, a cardiac catheterization may be indicated. The majority of testing is performed a few days prior to the clinic visit or on the day of clinic (with exception of very young patients and those undergoing a cardiac cath). All testing cannot be done on the same day as this can be difficult for the patient. Our nurse coordinator, or representative, will contact you regarding the scheduling of diagnostic tests and answer any questions you might have.
Visit with your clinician (physician or advanced practice provider)
Your clinician will obtain more medical history information during the clinic visit. The clinician will also discuss findings on studies performed (such as diagnostic imaging), and may show you pictures as well, to better understand the type of coronary anomaly your child has. We will also give you more details regarding the Coronary Artery Anomalies Program (CAAP).
Psychology
We have found that many patients and families desire more support through the process of learning about and living with AAOCA and other coronary anomalies. Psychology is a part of our program. Family and patient will meet with our psychologist during their clinic visit. It has been our experience that psychology is helpful in coping with this diagnosis, associated anxiety, and management of health-related behaviors.
Multidisciplinary Team Meeting
The CAAP Multidisciplinary Team Meeting consists of cardiologist, advanced practice providers, registered nurse, radiologists, interventional cardiologists, research staff and congenital heart surgeons. This meeting is held every 2 weeks. The cardiology provider presents the patient’s data after the entire evaluation is complete. The patient’s data (history, symptoms, diagnostic imaging, and any other pertinent details) are discussed in this meeting. The team looks at each patient as an individual and formulates the best plan of care/recommendations. This may be surgical intervention, or clinically monitoring the patient regularly in the cardiology clinic. Families will be called shortly after the meeting to discuss recommendations by the team and to answer any questions they may have.
What is meant by “clinically monitor”?
Exercise restrictions are typically lifted and the patient will see their cardiology provider every 1-2 years and as needed. Your cardiology provider will still be available if questions or concerns arise.
Surgical consultation
If surgery is recommended, the surgery coordinator will call the family to arrange a clinic appointment to meet the surgery staff (surgeon and advance practice provider). During that visit, the surgeon will discuss surgical options, risks, benefits, postoperative course, and answer any questions the family/patient may have.
