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10 Fibroids Gary P. Siskin, Jeffrey J. Wong, Anne C. Roberts, Jean Pierre Pelage, Arnaud Fauconnier, Pascal Lacombe, Alexandre Laurent, and

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10 Fibroids

Gary P. Siskin, Jeffrey J. Wong, Anne C. Roberts, Jean Pierre Pelage,

Arnaud Fauconnier, Pascal Lacombe, Alexandre Laurent, and Jafar Golzarian

10.1 Uterine Fibroid Embolization: Practice Development

Gary Siskin

G. Siskin, MD

Associate Professor of Radiology and Obstetrics and Gynecol- ogy, Albany Medical Center, 47 New Scotland Avenue, MC-113, Albany, NY 12208–3479, USA

The practice model for interventional radiology is changing and nowhere is that more evident than in the care surrounding patients undergoing the uter- ine artery embolization procedure for symptomatic uterine fibroids. For many years, interventional radiologists have had it good. The techniques that we have worked to develop given our skill set and expertise have often been some of the most interest- ing and cutting-edge procedures performed within all of medicine. Given the minimally invasive nature of our specialty, physicians referred patients to us and relied on our expertise to deliver this state- of-the-art care to their patients. Problems arose when it became evident that we accepted very little responsibility towards delivering the pre-procedure and post-procedure care associated with these pro- cedures and the disease processes bringing these patients to our attention. Physicians from a vari- ety of specialties have learned that it is within their skill set to perform these procedures, and are doing so for obvious economic reasons but also because they have the infrastructure, training, and desire to follow these patients throughout an entire episode of care.

Interventional radiologists now understand that this practice model can no longer continue. Instead, interventionalists must accept a number of respon- sibilities, including generating referrals, provid- ing the expertise to evaluate and prepare patients for our procedures, and caring for patients as they recover from our procedures.

Uterine fibroid embolization (UFE) represents one of the best examples of a procedure that can only become a successful part of an interventional practice if that practice is willing to take on the responsibilities inherent to this new model. In fact, generating referrals and providing pre- and post-

procedure care are mandatory components of a UFE practice. While most interventional radiologists would quickly state that this is not a radical depar- ture for them and their style of practice, it is not until one becomes immersed in the nuances of this procedure and this patient population that the enor- mous nature of this commitment and the demands on one’s time that are required for it to succeed can be understood.

The patients potentially served by UFE are dif- ferent to those often seen within an interventional radiology practice because they are healthy people with a lifestyle-altering problem. Because these patients are electively choosing to seek medical care, they make demands on health-care provid- ers that patients with greater morbidity often do not. In addition, this often represents the first time that these patients are seeking treatment for a medi- cal problem. In today’s world, with so much medi- cal information available to patients on television, in newspapers, and on the internet, it is no wonder that these patients tend to present for their consulta- tions already armed with a large amount of informa- tion regarding UFE and other treatment options for fibroids. In addition, women in general are known to be active participants in the decision-making process surrounding their health care and these patients are certainly no exception.

Interventionalists also have to become prepared to work with gynecologists since they are often the primary care providers for this patient population.

Typically, gynecology patients do not require the services offered by interventional radiology. There- fore, gynecologists are not accustomed to referring patients to us. More importantly, they are not accus- tomed to having another specialty offer an effective treatment for a classic “female problem” that only they have treated in the past. It is clear that their first impression, as a specialty, has been to view UFE with skepticism and even as a threat to their prac- tice. Therefore, gynecologists have not often been immediately forthcoming with referrals although recent acknowledgment by the American College

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of Obstetrics and Gynecology of the effectiveness or potential for effectiveness of this procedure has been indicative of the growing level of acceptance of this treatment option within the OB-GYN com- munity.

Taking these characteristics into account, one can see that a potential conflict exists between well- informed patients desiring an active role in their own health-care, and gynecologists perceiving UFE as a threat to their practice and therefore not provid- ing their patients with information about this proce- dure. This conflict forms the basis for the require- ment that interventional radiologists participate in generating referrals for UFE because gynecologists are not, in general, going to help start a UFE service.

However, it has been our experience that in time, once many UFE procedures have been performed at an institution with outcomes consistent with those reported nationally and internationally, gynecolo- gists begin referring patients and contributing to the continued success of this service. This does take time and in our case, several years have passed between our first cases, when all patients were self- referred, and now, when the majority of cases are referred from our local and regional gynecologists.

This trust was earned and grew largely from our ability to understand the above-stated conflict and to find ways to reach out directly to patients while at the same time educating gynecologists and assuring them that UFE will not lead to the demise of their practice.

The cornerstone of our practice development effort was the belief that the long-term success of a UFE service relies on cooperation from gynecolo- gists. We do believe that patients are more informed than they have ever been about matters concerning health care and that they are indeed directing health care decisions. However, it must be acknowledged that most patients still receive their health-care information from their physicians. The relationship between a patient and her gynecologist is often one of trust and, therefore, patients still rely heavily on their advice. It is probably reasonable to assume that direct and aggressive patient advertising will almost certainly lead to a short-term increase in the number of UFE procedures performed by an interventional radiologist. Ultimately, however, it is our belief that gynecologists will not appreciate attempts at work- ing around them and they will likely hurt your UFE practice by simply not supporting it.

With this in mind, we utilized several strategies for generating referrals to our UFE program: (1) education directed at gynecologists and patients

regarding UFE; (2) education directed at our- selves regarding fibroids and treatment options for fibroids; (3) consistent support of the relationship between patients and their gynecologists; (4) care which meets the expectations of our patients and their gynecologists; and (5) accessibility for patients and gynecologists to the providers of this service.

With this approach, we have earned referrals from local and regional gynecologists that are strongly supported by patient interest and positive word- of-mouth from patients going through UFE at our institution.

Our first task was to educate gynecologists about UFE. Interventional radiologists working within an academic institution may have an advantage here since they are more regularly exposed to educational activities. Offering lectures to medical students and residents concerning interventional radiology and its role in the care of OB-GYN patients is a first step that will likely lead to participation in journal clubs and departmental grand rounds. Our focus on educating students and residents was done with a clear under- standing that educating students and residents will lead to future gynecologists that have a good under- standing of the role of our services. This has a good chance of translating into long-term success since it is well known that after graduation, residents often remain in the region near where they have trained.

Education efforts, however, were not just directed at trainees. Staff and community gynecologists often attend these meetings, providing us with an oppor- tunity to make these physicians aware of what we can do for their patients. We also extended offers to provide lectures to physician groups in surround- ing community hospitals in order to increase their awareness of this procedure as well and found that monthly staff meetings or grand rounds at commu- nity hospitals make an excellent forum for this type of presentation or discussion.

Once physicians became more informed about UFE, we recognized the importance of informing patients about this treatment option. Keeping the cornerstone of our practice development philoso- phy in mind, we recognized the challenge to increase patient knowledge without directly advertising and therefore inviting the perception that we do not need gynecology. We utilized the public relations depart- ment in our own hospital to help us with this. Once we had just a few patients who had a successful outcome after UFE, our hospital PR department brought these patients to the attention of our local news media.

Every local newspaper and local television station has health reporters looking for stories of new and

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exciting breakthroughs in medical care and our com- munity was no exception. Once we had patients with good stories to tell, these success stories were printed in newspapers and were made the subject of televi- sion news reports. It was our belief that these infor- mative reports regarding this new procedure were not “direct advertising” yet had the same desired effect in reaching out to potential patients, making them aware of this option. Our efforts to educate our local gynecologists also enabled us to participate in patient-directed programs at community hospitals.

Ultimately, we were able to meet our early goal to pro- vide patients with the information necessary to ask their gynecologists questions regarding UFE, and to provide the information to gynecologists enabling them to answer those questions.

Efforts to educate both gynecologists and patients, however, are not enough. The final step in the education process involved the need to educate ourselves about uterine fibroids and the treatment options available to patients with fibroids. As rela- tionships are established with gynecologists and patients suffering from symptomatic fibroids, it will become clear that knowledge about embolization is not enough. It is impossible to become an expert on UFE without knowing and understanding uterine fibroids and where UFE potentially fits into the man- agement of these patients. Patients will undoubt- edly ask you questions about the “other” options and they expect you to know the answers. There- fore, attending conferences and reading books and articles about fibroids will be an important part of a practice development strategy. Reading should not be limited to medical journals and textbooks. Books written for the lay population should also represent mandatory reading because these are the books that your patients are reading. Similarly, familiarity with commonly visited web-sites and chat groups is nec- essary because this is where patients today are often receiving their medical information.

While education has always been an important component of our efforts to develop this part of our practice, providing care that meets and exceeds the expectations of our patients and our referring physicians is arguably more important for the long- term success of a UFE service. Acceptable outcomes and future referrals are dependent on our ability to provide excellent patient care and we strive to reach that goal at every step of the process. That is because good outcomes speak for themselves.

Meeting the expectations of referring gynecolo- gists is fairly straightforward. Gynecologists expect that UFE will be offered to patients with the high-

est probability of success and that we will achieve the success that we claim can be expected with this procedure. Therefore, familiarity with expected outcomes is mandatory for interventional radiolo- gists as is a fair assessment of a patient’s probabil- ity of success with this procedure. Gynecologists also expect that their patients will be comfortable during the procedure and that these procedures are performed with an appropriate level of expertise.

We have therefore encouraged all gynecologists to observe procedures performed on their patients.

Every gynecologist who has taken us up on that offer has consistently referred patients to us. Gynecolo- gists also expect reliable communication with our office so that they are aware when a patient is con- sidering this procedure, has undergone the proce- dure, and has demonstrated clinical improvement.

When gynecologists refer patients to interven- tional radiology for UFE, they are doing so with the understanding that everything surrounding the UFE procedure will be managed by the intervention- alists, including insurance pre-approval, hospital admission, pain management, and initial assessment in the event of a complication. There is no reason why any interventional radiologist cannot observe a patient overnight (if necessary) and provide pain management services during a patient’s recovery from UFE. It is perfectly acceptable to consult anes- thesia as pain management protocols are developed but it is not acceptable to perform this procedure and then rely on gynecologists to manage the pain expe- rienced during recovery. No, we cannot perform a hysterectomy in the event of a complication requir- ing that procedure. We can, however, assess that patient, communicate with their gynecologist if we suspect a complication, and maintain an appropri- ate level of involvement in that patient’s care during the management of that complication (facilitating imaging and researching questions that arise during these episodes). By taking on these responsibilities, we will earn our place as legitimate providers of this service. If an interventional radiologist is not willing to take on these responsibilities, then it is unreason- able to expect referrals since most of the hard work still rests on the shoulders of the gynecologist.

In our experience, meeting the expectations of the patients has been more challenging. As a result, we have changed a lot about the way we practice and have carried these changes over to virtually all aspects of our interventional radiology practice.

Patients expect to be seen by a physician in consulta- tion before any management decisions are made and any procedures are performed. For decades, inter-

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ventional radiologists were performing procedures that are essentially equivalent to surgery without ever meeting their patient outside of a brief pre- procedure visit immediately before the procedure started. Today, this cannot be tolerated and patients being considered for UFE must be seen in consulta- tion first and we believe that this is best performed in a true outpatient clinic setting in order to meet the expectations of our patients.

In order to effectively participate in clinical patient management, interventionalists require an infra- structure within their practice to manage patients in both the inpatient and outpatient setting. One would be hard-pressed to find a clinical specialty that does not consider space designed exclusively for establishing, maintaining, and fostering the physician–patient relationship a priority for their clinical practice. Most radiologists, however, work within hospital departments or outpatient imaging centers that are not optimized for “non-imaging”

outpatient consultations. Therefore, interventional radiologists seeking to develop this type of outpa- tient practice will need to overcome this obstacle by finding appropriate space either within or outside the hospital setting in order to evaluate patients in a true outpatient office.

An equally important expectation held by patients is the need for both expertise and compassion from their physician and the team making up an interven- tional practice. Attention must be paid to establish- ing rapport and communicating honestly and effec- tively with patients since this will form the basis of a successful doctor–patient relationship. Creating a good rapport with patients in an outpatient clinic setting will increase their comfort, enhancing the discussions about their medical history and treat- ment options. As technology has improved, most physicians often focus on diagnosing and treating the disease causing the patient to seek treatment.

While this is of course a necessary component of any medical treatment, time should be set aside to understand how best to treat both the disease and the way that the disease has affected the patient’s quality of life. As medical knowledge and technology have improved, most physicians, and perhaps inter- ventionalists in particular, have become focused on diagnosing and treating disease. An interventional- ist skilled at diagnosing and treating complex medi- cal problems but understanding that disease and the procedures used to diagnose and treat disease have implications on a patient’s quality of life, will have the insight necessary to successfully contribute to the overall care of their patients.

We have found it to be very helpful for our patients to make sure they have the opportunity to speak with a female nurse who is familiar with all aspects of this procedure and we have devoted the resources necessary to support nurse practitioners and a nurse clinician who are themselves experts in UFE and in the care of UFE patients. Nursing support is critical to success with UFE because it enables more patients to confide in our team regarding the true nature of their symptoms and as a result, the true nature of their expectations. Once these non-physician pro- viders are integrated into a practice, the physicians must respect their role as the patient advocate within the practice and support them in the eyes of the patient so the patient is comfortable in their deal- ings with them and has confidence in utilizing all of the personnel resources within a cohesive practice.

It is also important to be accessible to patients to be willing to address their concerns before and after their UFE procedure. This requires a commitment on the part of an interventional radiology service because these patients do ask questions and do make demands on staff. There is no doubt that nursing staff dedicated to providing this type of care to these patients is critical for success. We have always tried to anticipate the needs and concerns of our patients and make it a rule to proactively call patients indi- vidually at defined times during the recovery period in order that they know we are there for them. In addition, a willingness on our part to address con- cerns via e-mail added a level of convenience not experienced by most patients and, in truth, is easier for us since focused answers to questions can be pro- vided in very little time. When this part of our ser- vice runs smoothly, patients are almost uniformly impressed and very satisfied, which often leads to positive feedback to their gynecologist, family, and friends (all potential sources of future referrals).

By taking the “education” and “service” approach to practice development, we have been successfully moving towards our initial goal of having local and regional gynecologists mention UFE in the list of pos- sible treatment options for uterine fibroids. It was and still has never been our expectation that every patient with fibroids gets referred for UFE. Including UFE in that list is a big step for most gynecologists but by no means assures you of referrals. It does, however, assure that patients will ask questions and gynecolo- gists will need to provide answers. Even if a gynecolo- gist still recommends hysterectomy for most patients, the mere fact that UFE is listed as an alternative to surgery will provide an option for patients looking for a nonsurgical treatment.

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It has also never been our expectation to “take these patients away” from the gynecologist. We understand that nobody controls a patient. In fact, it is our belief that any group claiming to have “con- trol” over a patient or group of patients is doing so because they have established the outpatient based practice that enables them to do so. Being confident in our ability to provide that service, we divert the focus away from “control”, support the relationship between a patient and their gynecologist, and do not undermine that relationship in any way. Therefore, we communicate frequently with referring gynecol- ogists and require that every patient be under the care of a gynecologist (preferably their own) before undergoing the UFE procedure. When patients tell us that they are angry with their gynecologist for not discussing UFE, we defend that gynecologist and explain that it takes time for any physician to feel comfortable recommending a new procedure. We would rather not have patients sever their relation- ship with a gynecologist because of UFE because, again, that does not bode well for the long-term suc- cess of our program and, more importantly, is not necessarily in the best interest of our patients. Yes, we are not happy when we hear that, but we look at it as an opportunity to communicate with this gyne- cologist, educate him or her about UFE, and add to the number of patients from that practice treated successfully with UFE.

We are pleased to report that the referral pattern for UFE has changed with time. As mentioned, most of our referrals now come from gynecologists instead of from the patients themselves. In addition, several practices in our area send almost all patients with fibroids to our office before treatment decisions are made, simply to educate them regarding all avail- able treatment options. This has clearly exceeded our expectations. Most other practices may not be as forthcoming, but they are still willing to refer patients who are interested in nonsurgical alterna- tives and I believe that represents an achievable goal for any interventional radiologist interested in pro- viding this service. Yes, there are still gynecologists in this area who deny all knowledge of this proce- dure (even with successful patients in their practice)

but the number of physicians discouraging patients from UFE has dropped significantly.

Now, our task is to sustain this level of interest.

We continue to provide the above-described level of care to our patients and continue to communicate frequently with referring gynecologists (with copies of letters always sent to primary care practitioners).

We regularly participate in local health fairs in order to interact directly with referring physicians and potential patients. In our region, there is a women’s health fair sponsored by ACOG and we are regular participants in that event. We believe this demon- strates our commitment to this service to the large number of gynecologists participating in this event and we also like to take advantage of events that will provide us with opportunities to interact with gyne- cologists face to face. We have also put together a summary of our own experience, which we sent out to all gynecologists in this region, both to continue with our education efforts and to establish ourselves as the experts in this region. We also continue to provide educational lectures to house-staff in gyne- cology and continue inviting students and residents to our lab to observe procedures. We have clearly not stopped with our efforts to develop this service.

In conclusion, a UFE service requires a level of com- mitment not typically required for other interven- tional radiology services. Without that commitment, success is not likely and you will quickly find that all parties participating in the care of these patients, including the patients themselves, expect this level of commitment. This effort, however, is not without its reward. UFE works and has a tremendous impact on both the disease process and the patient’s overall quality of life. When you successfully treat a healthy patient with their first significant health problem, you have a high probability of making that patient very happy. This is what makes the effort worth it, especially when you begin noticing that most patients undergoing UFE are satisfied with their results. Gyne- cologists have already recognized the outcomes that are associated with UFE and making the effort that is described throughout this chapter will cause them to take notice and contribute to the development of a successful UFE practice.

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