The Role of the Advanced Practice Provider in a Pericardial Center of Excellence

Managing a Chronic Disease

There are several studies illustrating the potential of nurse-led clinics for complex cardiovascular diseases. Nurse-led syncope, atrial fibrillation, and heart failure clinics show promise of improving patient’s management of symptoms [12]. They have been shown to decrease mortality, increase quality of care, and increase medication adherence [12]. They also reduce healthcare utilization and costs. The benefits that these clinics provide can be extrapolated to the role of the APP regarding pericardial disease clinics in tertiary centers, which provide care to a high volume of patients [13]. These patients also require frequent laboratory investigations, management, and tapering of medications and their side effects. There is also a need for education about this chronic disease and the medications used to manage it.

Pericardial Center of Excellence

A pericardial center of excellence is defined as a multidisciplinary center of excellence where a patient with pericarditis can see a pericardial specialist, receive or confirm a diagnosis, and see a multidisciplinary team over a span of two days. The flow of care in this center is shown in Fig. 2. They will have specialized imaging, including Cardiac MRI as well as Echo, ECG and labs during the first visit. Many of these patients travel significant distances to see a pericardial specialist and it is difficult for them to return often for appointments. Therefore, it is more effective to complete this process in 1–2 days. The APP plays a vital role in coordinating care, managing treatment, and providing education for these patients. The outcomes for these pericardial patients are improved significantly with these centers due to the specialized medical and surgical care. If necessary, they can see various specialty providers related to their diagnosis such as rheumatology, infectious disease, as well as consult with cardiothoracic surgery if necessary.

Multidisciplinary Approach

The benefit of coming to a Pericardial Center of Excellence is having a multidisciplinary team evaluate the patient. This team consists of members from administration, clinical (physicians, APP, and nurses), and pharmacy. Ideally the center would have multiple pericardial specialists and APPs who can treat these patients. A pericardial center should have a minimum of one pericardial specialist and a designated APP and manage at least 100 patients with complex pericardial disease per year.

The patient can also be seen by other cardiac specialties, such as electrophysiology or heart failure, for optimization of medical therapy. Any further testing, such as right or left heart catheterization to assess LV filling pressures or stress testing, metabolic stress echocardiography if appropriate, is scheduled. They will also be referred to rheumatology if there is any concern for autoimmune disorders to guide proper management, as these patients may be refractory to traditional therapy. In addition, the patient can be seen by cardiothoracic surgery if a total radical pericardiectomy is in the imminent future.

APP Qualifications and Function

In order to function in the pericardial center, the APP would require formal and informal qualifications. Formal qualifications include having a master’s degree in nursing or Master of Science in physician assistant studies. Informal qualifications include knowing what criteria is present to diagnose pericarditis including elevated inflammatory markers, ECG changes, and clinical signs and symptoms. They should also have a background in cardiology and the basic knowledge of the diagnostic imaging including Echo and CMR. They should have some experiencing providing care in the outpatients setting and seeing patients in a timely manner and ordering appropriate labs and testing as well as be familiar with the Electronic Medical Record (EMR) used in that institution. In addition, a training period of about six weeks where the APP can shadow a cardiologist and another APP and become familiar with various types of pericardial patients including those diagnosed with acute, chronic, and constrictive disease would be ideal. The APP should also have an experienced provider to direct specific questions to. At the end of the orientation period, they should be proficient in seeing a full schedule of nine to ten patients independently. Once the APP has been properly trained, they will follow established pericardial patients or patients that have already been seen at least once by the cardiologist. These appointments can be done in person or virtually if patients are coming from long distances to provide more longitudinal care, manage a larger volume, and retain patients. Virtual visits are especially effective when trying to manage medications and tapering for a large volume of patients. About 50-60% of their time would be devoted to patient care.

Ideally, the APP would have administrative and research time. They would devote this time to do chart review of new pericardial patients, answering messages in the patient portal, and following labs and test results. This time would also be devoted to screening incoming and established patients for clinical research studies and co-authoring manuscripts on pericardial disease as well as presenting at conferences. They will also be involved in educating other clinicians, APPs, and multi-disciplinary teams on these pericardial conditions.

Referrals

The pericardial center receives referrals internally and externally from various services, the local emergency department, and all the domains of cardiology, cardiothoracic surgery, and rheumatology. There are also patients who are self-referred and make appointments though general scheduling. The timeline for patient assessment and management is dependent on acuity and determined on a case-by-case basis. There is a standard order set for these patients being seen in the pericardial clinic, including comprehensive lab work to include inflammatory markers, ECG, Echo, CT scan, and Cardiac MRI. Outside records and images are also collected and reviewed before the patient’s appointment. Due to the number of referrals, the patients are assigned to a pericardial specialist, and appointments are given based on acuity. The APP reviews each new patient chart to ensure all necessary testing and imaging are ordered. The APP then discusses each new patient and prior imaging with the cardiologist before the appointment. Any additional tests and consultations with various specialties, such as rheumatology, infectious disease, and cardiothoracic surgery, are scheduled prior to the appointment if necessary.

Patient Evaluation and Plan of Care

The patient is first seen by a cardiologist specializing in pericardial disease, where a thorough history and physical are performed. This includes the date of onset, symptoms, number of emergency department visits and hospitalizations related to pericarditis, number of recurrences, prior testing and treatment, and past inflammatory markers. It is important to establish the pericarditis burden of the initial visit. The patient is next sent for the scheduled tests and results of all imaging and labs are reviewed with the patient the same day. If a biologic like rilonacept is presumed to be started, then additional investigations (tuberculosis screening, human immunodeficiency viral screening panel, Hepatitis B panel, and test for pregnancy) are done, and the paperwork for the medication is initiated. After testing is completed, the plan of care is then discussed with the patient. The APP is present for this discussion. If the medications they are on are escalated to higher doses, the nurse practitioner will review the tapering, set up laboratory work, and schedule the appropriate tests and follow-up appointments.

If any new medications such as biologics are recommended, the APP will provide information about this drug, its side effects, how to manage them, and the duration of therapy. They will also set up recurring laboratory investigations such as C-reactive protein (CRP), High sensitivity CRP (HS-CRP), review the tapering schedules, and once again set up appropriate follow-up and place these orders. Once a diagnosis of pericarditis is made, the patient must also make lifestyle modifications. Exercise, activity, and heart rate restrictions, along with diet recommendations, are also part of this discussion. It is important for the patient to limit their activity, keeping heart rate less than 100 bpm until symptoms have fully resolved and inflammatory markers have normalized and if pertinent CMR shows near resolution of inflammation. Even with these restrictions patients can have a flare up with resuming intense physical activity [15].

Patient Education and Support

Initiating any new medication, especially IL-blockers, requires patient education. The patients often need assistance with filling out the paperwork and understanding the process for obtaining the medication and the cost. The APP works closely with specialty pharmacies for insurance authorization and communicates with the patient during this process. The APP also functions as liaison between the patient and pharmaceutical company to help access patient support programs for financial assistance and education. Recurrent laboratory orders are also initiated as these patients will be on an aggressive tapering schedule for the steroids, nonsteroidal, and anti-inflammatories once the biologic is started. Once on the biologic for one-month, inflammatory markers are checked every two weeks until the patient is on single therapy. They also have a Complete Blood Count (CBC) and Complete Metabolic Panel (CMP) every three months while on Rilonacept to monitor the white blood cell count (WBC) and liver function tests (LFTs). The lipid panel is also checked, as Rilonacept can elevate the triglyceride level over time. Any patient initiated on Rilonacept has a three-month check-in with the nurse practitioner, either in person or virtually. The three-month follow-up with the APP provides any further education and questions and reviews recent labs and any symptoms or side effects the patient may be experiencing. The six-month follow-up with the pericardial specialist includes follow-up imaging to monitor disease progression and improvement. It is often the case that peer to peer evaluations are periodically required to continue therapy and provide a rationale for follow-up imaging. The APP is responsible for these reviews and drafting appeal letters.

The patient also follows closely with the APP for adverse side effects of medications, pericardial flares, and escalation of therapy. These aid in avoiding emergency room visits or placing patients back on steroid therapy. The electronic medical record (EMR) is followed closely to monitor labs and is used as an essential mode of patient communication. The patient messages through the portal with any medication issues or symptoms. The EMR and patient portal are frequently used as patient messages for minor symptoms, medication management, and direction on the tapering schedule.

The complexity and chronicity of pericardial disease not only affects the physical health but also the mental health and quality of life of the patients. Patients with recurrent pericarditis report reduced levels of physical and mental health [14]. They are often misdiagnosed and or under-treated for many years and suffer from severe disease morbidity due to the unpredictability of the disease. They must refrain from physical activity and must restrict their activity for prolonged periods of time [15]. They also carry a fear of a recurrence of symptoms as they taper and wean off the medications. The practitioner’s role involves providing reassurance, optimal support, and resources for these patients who struggle with their mental health.

Fig. 2figure 2

Flow Diagram of Pericardial Center of Excellence

Research

In addition, the APP assists with recruiting for clinical trials as well as updating the pericardial registries and works closely with primary investigators, research nurses, research fellows and coordinators. They screen patients for potential studies and assist with the patients being seen based on the study visits and follow-up required. Ideally, the patients are screened prior to their visit to assess their eligibility. They also monitor labs, imaging studies, and any adverse side effects associated with the trial and provide education about the clinical trial to eligible patients.

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