Elevating Patient Care through Hereditary Cancer Risk Assessment and Management

How The OB/GYN Specialists incorporated hereditary cancer risk assessment and management into their practice

Testing for hereditary cancer syndromes has received widespread recognition by medical organizations as an important tool to help physicians identify patients with a predisposition to cancer. Recent professional practice guidelines released by the American College of Obstetricians and Gynecologists (ACOG) and the American Society of Clinical Oncology (ASCO) encourage physicians to include assessment and testing for hereditary cancer syndromes as a standard of care.

As physicians strive to provide the best patient care possible, they must do so within a health care system that can be complex and frustrating to contend with. The idea of offering hereditary cancer risk assessment and management at the practice level elicits a number of concerns: How will it impact the number of patients physicians can see on a daily basis? Will the insurance process consume endless hours of staff time? How will the physician interpret and deliver test results?

Incorporating testing into an ob/gyn practice in a way that addresses these concerns and effectively serves patients requires a level of support throughout the process as well as physicians dedicated to preventive care. The OB/GYN Specialists of Voorhees, New Jersey, found the right combination when they began working with Myriad Genetic Laboratories, Inc. in 2007 to offer hereditary risk assessment and management to their patients. The practice—and its patients—have wholly embraced this service and have benefited greatly from it.

“It was a relief”

Dr Michele Godorecci and Dr Susanne Adamson founded The OB/GYN Specialists in 2006, a practice that reflects their strong commitment to women’s health. At that time, they were aware of testing for hereditary cancer syndromes and had referred some patients to specialized doctors who performed these types of tests. However, the problem they experienced was a lack of follow through. Dr Godorecci explains: “People are very busy. And I think that women who have children tend to put their own health last. It’s very difficult for them to take care of themselves adequately. Unfortunately, it often catches up with them.” And when patients did get tested, they didn’t always receive the information they needed to take preventive measures in the event of a positive test.

For example, Dr Godorecci recalls one patient she saw: “She came in with a CAT scan and it was clear she had end-stage ovarian cancer,” she says. “And I felt, what a tragedy that she had taken it upon herself to get assessed and tested for HBOC. But the physician she saw never adequately reviewed her risk of ovarian cancer, and that prophylactic removal of her ovaries may have prevented ovarian cancer and breast cancer. This patient was probably going to die. She had a 17-year-old daughter whom she would probably never see grow up. I thought something really has to change here, because she got half of it right and, unfortunately, the follow through was abysmal.”

When a Myriad representative visited The OB/GYN Specialists in the summer of 2007 and explained how they could incorporate hereditary cancer risk assessment and management into their practice, it was more than an easy decision—it was a relief. “My first words to her [the Myriad representative] were, ‘What has taken you so long?’ because there have been a number of patients I really felt warranted testing,” says Dr Godorecci.

The ability to assess and manage patients at risk for hereditary cancers in their practice fit well with their preventive care philosophy. “We’re here to treat our patients,” says Dr Adamson. “That’s really why we went into this field in the first place. The best way for a cure is early detection, so if we can find things early and be proactive, we’re going to help patients more than we can in any other way.”

By incorporating this service into their practice, doctors Godorecci and Adamson could now make sure patients that received the full benefit of hereditary cancer risk assessment and management—assessment, counseling, and testing—without delay and with proper follow-up.

Assessing at-risk patients

Identifying patients who may benefit from hereditary cancer testing requires doctors take a more extensive family history. But, that doesn’t mean it needs to take more time or limit the number of patients that can be seen each day. As Dr Adamson points out, “You always have patients who have other problems than what they are coming in for, and I don’t think this extensive history taking adds more time than anything else.”

To facilitate the process, the doctors at The OB/ GYN Specialists use a more detailed family history form (FIGURE). “We have a special form that all our patients fill out. It provides details of the family history better than our standard forms do,” says Dr Adamson.

Since the majority of their patients come in for annual exams, the doctors have them fill out the form each year as a standard part of their visit. This allows the physicians to monitor patients and recommend testing if the responses on the form change. When a patient has an obvious family history of cancer, such as a sister or mother with breast cancer, it is easier to know they should be tested. However, when the patient has more distant or sporadic history of cancer, it can be more difficult to determine if a patient warrants testing. For these complex cases, Dr Adamson says that they call Myriad’s medical service team for guidance.

Educating patients and answering questions

Advising a patient to consider testing can create worry— not only for the patient, but also for close family members who may also need to be tested. Drs Godorecci and Adamson have found that the best way to address patient concerns is to provide complete information.

They also give their patients a Myriad DVD and brochure about hereditary cancer to allow patients to self educate.

Managing insurance claims

Insurance companies have made great progress in processing claims for hereditary cancer testing. Although each case is unique, their experience has shown 90% of insurance companies now cover the cost of the test as well as any necessary follow-up visits or preventive procedures. Additionally, the average patient pays coinsurance of less than 10% of test cost, and a majority of patients have no out-of-pocket costs. Dr Adamson has found that insurance issues are minimal. “We don’t have many problems with insurance,” she says. “Myriad provides helpful insurance support.”

However, for both doctors, no insurance requirement is great enough to risk a patient’s life. Dr Godorecci had a patient experience that left a lasting impression on her. When she first started assessing and testing patients, for hereditary cancer, some insurance companies would deny claims, regardless of the patient history. Dr Godorecci would then have to provide additional documents, including a letter of medical necessity, to appeal the decision. This was an extremely time-consuming process, and she questioned whether it was worth the time.

One day another doctor’s patient came in for a visit because that doctor was on disability. The patient was 41, and in the course of interviewing her, Dr Godorecci discovered that the patient’s 51-year-old sister had survived a cancer she had been diagnosed with at age 32. Despite the red flag, Dr Godorecci wavered on testing her. “I felt boy, if she had this certain insurance I’m not even going to bother to test her because I know what they were going to say. And I looked and she didn’t have it, so I tested her and she was one of my first positives. I thought, never again am I going to decide whether or not to test somebody based upon their insurance… I shudder to think what could have happened. It was a good lesson for me.”

Delivering test results

Whether the results are positive or negative, being tested and receiving the results can be a life-changing event for patients. Patients who test positive can be understandably upset, but by working with us, they gain the opportunity to immediately put into place a plan of action to proactively combat the possibility of cancer—in other words, these patients gain a sense of control. Patients who test negative often feel a sense of empowerment for proactively choosing to be tested in the first place. These patients will then be managed based on their personal and family histories.

Counseling patients about their test results can initially be a difficult task for doctors. To prepare themselves to meet with patients and answer questions, doctors can call Myriad’s medical services team, whose members are available Monday through Friday, online, by phone, or in person. When they first started testing, Drs Godorecci and Adamson often contacted this team before discussing results with patients.

Over time, it becomes easier to discuss results. “You learn a lot with the first patient,” Dr Adamson says. “That’s when you really get into it deeply with the Regional Medical Specialists before you present to the patient.” She has also learned that “patients need to understand that they don’t get a result and have to be scared the rest of their lives—they get a result and then together, we act proactively to combat the possibility of cancer.” The doctors make a point of staying current on research and clinical guidelines.

When a patient schedules an appointment to discuss test results, Dr Godorecci suggests that she bring someone with her—a spouse, a family member, a good friend—who can act not only as a second set of ears but a questioner in their own right. The goal is to make sure the patient is supported and fully informed and knows how to proceed.

Measuring the impact of hereditary cancer management

Since incorporating hereditary cancer risk assessment and management services into their practice, Drs Godorecci and Adamson have seen many benefits for their patients and their practice.

Through word-of-mouth, passed from one patient to another, the two doctors have gained a reputation for being very thorough. “That’s the kind of physician patients would prefer to see,” says Dr Godorecci. “It is mind boggling how many referrals you get. So you’re going to build your practice, which you can’t put a price on.”

Dr Godorecci understands that some physicians can be uncomfortable taking care of patients when they really don’t know how to approach hereditary cancer risk assessment and management. In such situations, she believes that these physicians should at least know which patients should be tested and have a list of specialists for patient referral.

In the end, it all comes down to patient care, which, according to Dr Godorecci, means something different to each doctor. “You have to take care of the patient. You can’t not counsel them because you’re worried about your office hours. You have to take the time out for this counseling session.”

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