We are grateful to the American College of Cardiology Quality Summit for the opportunity to present our work. The title of our project is Using a Multidisciplinary Virtual Consultation Platform to Enhance Community Referrals for Developing a Cardiac Amyloidosis Program, the Enhance REFCA Project. Our objectives include, one, to discuss the steps involved in establishing a multidisciplinary cardiac amyloidosis program, and two, to outline the benefits of multidisciplinary management in cardiac amyloidosis. Cardiac amyloidosis is an infiltrative cardiomyopathy caused by extracellular deposition of specific precursor proteins in the heart. It is not rare and accounts for 13% of heart failure cases. Unfortunately, it continues to be diagnosed in later stages after significant organ involvement. As shown in the slide, the number of cases of amyloidosis continues to increase. Although light chain amyloidosis continues to have the greatest prevalence, the number of new cases of wild-type transteritin amyloidosis has been increasing. Amyloidosis is a multisystemic disease. It can be difficult to recognize due to variable clinical presentation and nonspecific symptoms. It affects multiple organ systems, including the central nervous system, the autonomic nervous system, the peripheral nervous system, the kidneys, the eyes, the cardiovascular system, the gastrointestinal system, and the musculoskeletal system, where it often presents as carpal tunnel syndrome. The time to diagnosis is important because this disease is associated with significant morbidity and mortality, especially when there is cardiac involvement. There are three major types of cardiac amyloidosis, the light chain amyloidosis, the wild-type transteritin amyloidosis, and the hereditary or mutant transteritin amyloidosis. The median survival in cardiac amyloidosis depends on the type of amyloidosis and the stage at the time of diagnosis. For light chain amyloidosis, the median survival is six to nine months after the diagnosis of cardiac involvement. For wild-type transteritin cardiac amyloidosis, the median survival is three and a half years after the onset of cardiac involvement. And for hereditary or mutant transteritin cardiac amyloidosis, the median survival is two and a half years after a diagnosis of cardiac involvement. Amyloidosis is a progressive disease. At the onset, patients are often asymptomatic and don't even know that they have the condition. As the disease progresses, there is gradual deposition of amyloid in various organ tissues, and the patients become symptomatic. The degree of cardiac symptoms also increases as amyloid accumulation increases. There are four cardinal steps in starting an amyloidosis program. Step one involves the identification of multidisciplinary stakeholders, and this can include specialists such as the cardiologist, the neurologist, the hematologist, the gastrointestinal expert, the nephrologist, etc. Step two involves developing overarching program goals with input from all stakeholders. Step three involves the creation or acquisition of institutional or departmental buy-in and interest in the program. And step four involves a system of emphasizing program growth and development to enable sustenance over time. Multidisciplinary meetings should be held for all cardiac amyloidosis programs. The goals of multidisciplinary meetings include, one, to identify strategies to balance provider expertise, patient care, and program development. Two, to ensure regular discussion of complex patient care. Three, to allow coordination of program growth and outreach. Four, to enable planning of educational programs. And five, to provide an opportunity for research and clinical collaboration amongst experts. Education is a critical component of a cardiac amyloidosis program. Educational talks can be held within the institution or in the region and promotes publicity for the program. Institutional educational activities are geared towards development of novel strategies as well as diagnostic algorithms and could take the form of grand rounds as well as informal talks. Community education programs are designed to target the community population as well as ensure education of external healthcare providers. Although education of external healthcare providers is slow and time-consuming, it's associated with benefits and sustenance of program growth in the long run. Electronic medical records can be used to create a best practice advisory pop-up if certain criteria are met and it's suspected that a patient could have cardiac amyloidosis. This pop-up can be linked to an amyloidosis order set for ease of diagnostic testing. Machine learning algorithms can also be used when available. The design of the clinic is variable and could be a dedicated or joint clinic design versus individual amyloid clinics. The advantages of individual clinics include the ability to block appointments, streamline care, focus on patient education, as well as have dedicated ancillary staff. The joint clinic model is the ideal method but only works if there is substantial patient volume to schedule regular clinics. Infrequent joint clinics may actually cause a problem as it may lead to a delay in evaluation if the patient volume is not substantial. So in programs that are just starting up or have small patient volume, it may be better to use individual clinics where patients can be booked rapidly to avoid a prolonged appointment with time. The choice of the clinic setting is also variable and depends on the available physical space, the multidisciplinary team involvement, availability and experience of the involved cardiologist and other specialists, accessibility of hospital resources, as well as the more frequent origin of referrals. Community outreach programs are necessary to maintain program growth and ensure sustained visibility. Community outreach is a necessary aspect to publicize the program in your region and generate further referrals. Through outreach, you could also partner with the institutional marketing team to generate promotional documents, emails, as well as social media posts that can further publicize the program. The inpatient management of patients suspected or who have cardiac amyloidosis should involve consultation with specialists who have knowledge in the initial workup and management of these patients. Additionally, an advanced heart failure consultation is needed for patients who are receiving, patients with light chain amyloidosis who are receiving stem cell transplant, as they can help with managing the volume status, blood pressure or cardiac arrhythmias. To maintain growth of a cardiac amyloidosis program, collaborations are needed and could occur with other local centers in the area or partnerships could also be created with national organizations such as the Amyloidosis Research Consortium, the Amyloidosis Foundation and various amyloidosis support groups. Additionally, programs could collaborate with companies that produce novel amyloid therapies on various areas such as education, research and community outreach. Research is useful for generating quality improvement and outcome and clinical outcome measures in cardiac amyloidosis program. It is encouraged to participate in clinical trials and patient registries, which also creates further visibility and exposure for the program. Additionally, an internal database could be created which would also stimulate future research. The benefits of a multidisciplinary cardiac amyloidosis programs include one, to provide integrative, efficient and coordinated care for cardiac amyloidosis patients. Two, to advance quality and clinical care outcomes. And three, to be recognized as a referral center of excellence. At UC Davis, the case was different in 2019. Despite offering services to a robust heart failure population consisting of approximately 7,000 heart failure patients per year, we had only previously identified and treated 14 patients with a confirmed diagnosis of transteritin cardiac amyloidosis. Because of this, the heart failure providers in the institution met and decided that it was critical to develop a cardiac amyloidosis program at our institution. The goals of the UC Davis cardiac amyloidosis program include one, multidisciplinary representation and meetings. Two, regular scheduling of educational talks and patient discussion forums. Three, development of a cardiac amyloidosis diagnostic algorithm. Four, creation of a website for cardiac amyloidosis. And five, production of publicity flyers and development of an electronic referral platform for cardiac amyloidosis patients. After obtaining inputs from various specialties and stakeholders, we developed the diagnostic algorithm below. The first box talks about factors or clinical conditions which should lead a provider to suspect that a patient has cardiac amyloidosis. On the left side, we begin by ordering blood On the left side, we begin by ordering blood testing. And if this blood testing is positive, then patients are suspected to have light chain amyloidosis and are referred to see a hematologist. Moving to the right side, if the blood testing is negative, then patients receive an imaging study called the technician pyrophosphate scan. If this is positive, then this means that they likely have cardiac amyloidosis and gene sequencing is done to determine if they have the hereditary or wild type. Now, if for patients who have a negative imaging test and are highly suspected still to have cardiac amyloidosis, they need to undergo further testing with an endomalcardial biopsy, which can be sent for Congo red staining, mass spectrometry, or immunohistochemistry. This is a current UC Davis cardiac amyloidosis diagnostic algorithm. After creating a diagnostic algorithm, we developed flyers. These flyers had a barcode which could be scanned and which could redirect providers to our online electronic platform for referral of patients. The various stakeholders in our program included the heart failure cardiologist, the neurologist, the hematologist, the nephrologist, a hand surgeon, specialty pharmacist, the cardiology administration, heart failure nurses, and we actually do have a dedicated cardiac amyloidosis nurse, a software engineer that helped us with development of the website as well as electronic referral platform, and ancillary staff that consisted of dieticians as well as physical therapists. With the help of a software engineer, as well as institutional marketing departments, we developed the website shown, which has become a very useful resource in patient education. So next, I'm going to delve into the processes involved in development of our enhanced REFCA electronic referral platform, as well as the findings from this quality project. The aims of enhanced REFCA included, one, to decrease the time to evaluation for patients referred to UC Davis Medical Center for the diagnosis of transteric and cardiac amyloidosis, and two, to enhance the creation of partnership networks between UC Davis Medical Center and community providers specifically for the diagnosis and management of patients with transteric and cardiac amyloidosis. Our clinical outcomes included, one, the time to evaluation, so a decrease in time to evaluation was the desired result, and two, development of partnership networks, and an increase in the number of partnership networks was also a desired outcome. The development phase of the enhanced REFCA electronic referral platform started with multidisciplinary meetings that involved several stakeholders, as well as feedback provided to the software engineer on how best to develop the electronic referral platform, as well as what clinical components were considered essential for successful implementation of this platform. The platform had several features. One, it was web-enabled. Two, it was utilized HIPAA-compliant software, and three, it also required two-factor authentication as an additional layer of security. Data storage was done in FHIR AWS cloud servers, and the clinical documentation was integrated through Redux into existing electronic medical record platforms or systems. The platform, which can be accessed at the web address shown, was activated on the 15th of April 2021. If you click on the link I showed in the previous slide, this is a snapshot of what the electronic platform looks like. There is an area on the right side of the screen that allows the provider to put in their name, as well as their contact information, and the area on the left side of the screen allows the provider to put in basic information about the patient, including the history, the physical examination, as well as the manifestations exhibited that created the suspicion for cardiac amyloidosis. As shown in the graph, the number of referrals that we received for evaluation for cardiac amyloidosis increased after the electronic platform EnhanceREFCA was activated. But you can also see that despite the fact that the number of referrals increased significantly, only less than a third, depending on the month, of these referrals actually had cardiac amyloidosis. The geographical map shown shows you the distribution and penetration of our program in the Sacramento region before the EnhanceREFCA platform was launched. On the left, and the distribution and penetration of our program after the EnhanceREFCA was launched on the right, as you can see that the intensity of the program was indicated using numerical numbers 0, 1, 2, 3, etc., the higher number, meaning that we had better representation in such areas. As obvious when you compare the map on the left and the map on the right, you can see that the degree, the intensity of penetration is actually higher, going as high as 4 after EnhanceREFCA was implemented. And you can also see that the geographical spread is also wider when you compare to the map on the left. In similar fashion, the geographical map on the left shows you the distribution, geographical distribution and extent of penetration of a cardiac amyloidosis program in the entire California region before EnhanceREFCA was implemented. And on the right, we see the geographical distribution and penetration of our program after EnhanceREFCA was implemented. Again, the findings are similar. The geographical distribution and width of our program was more extensive after the program launched and the intensity, you know, the deeper colors, you know, higher frequency also increased with the program launch. In numerical terms, the average number of patients that were referred for evaluation for cardiac amyloidosis increased from 1.87 cases per month to 2.9 cases per month after EnhanceREFCA electronic platform was implemented. And this was statistically significant with a p-value of 0.03. But we also observed that the average number of cases that were confirmed remained constant, 1.4 cases per month before and 1.5 cases per month after EnhanceREFCA was implemented. So despite the increased number of referrals, the number of patients that we diagnosed per month appeared to remain constant. It was also interesting to note that none of the referrals were made on the electronic referral platform. Although EnhanceREFCA increased the number of patients referred for trans-steroid and cardiac amyloidosis evaluations and widened the geographical reach of our program from 20 to 42 zip codes, the program launch appeared to create publicity for our program. But then the referring providers prefer to use the traditional UC Davis referral systems, including phone calls and emails, instead of using the electronic platform. Now the disadvantage of using the traditional UC Davis referral systems was that it would take longer for those patients to be scheduled for an appointment because they would fall in line with the rest of patients that were referred, as opposed to the electronic referral platform where they would be recognized quickly and scheduled as priority to be seen and evaluated for cardiac amyloidosis program. So when we were discussing these findings in our multidisciplinary meetings, we thought that the electronic platform would require provider engagement for successful implementation. It seems like the providers preferred something quicker, for instance, a phone call or an email. They didn't want to click on an extra link and fill out all the information. Despite the offer of feedback, real-time feedback, as well as shorter wait times for clinic appointments, they preferred to use traditional systems that probably were more efficient and time-saving for them. We concluded that cardiac amyloidosis is a complex multisystemic disease and interdisciplinary management and collaborative care is needed for successful therapies. An amyloidosis center of excellence is beneficial regionally as well as nationwide and partnerships are needed to develop best practices. These are my references. Thank you for listening to my presentation and I look forward to receiving your comments.

cardiac amyloidosis program

multidisciplinary management

diagnosis

types of cardiac amyloidosis

education

collaboration