New program helps breast cancer patients

Successful pilot becomes full-time program

A case management program for newly diagnosed breast cancer patients at MeritCare Health System in Fargo, ND, helps women smoothly navigate through the health care maze as they make treatment decisions.

The program started out as a pilot project in January 2002. The response from patients and staff has been so good the health system has made the job a full-time position.

"They have realized what it has done in the way of patient satisfaction and in helping to streamline the care," says Linda Sveningson, RN, MS, AOCN, breast cancer case manager at MeritCare.

At MeritCare, breast cancer case manager is one full-time equivalent position shared by two master’s-prepared nurses.

The nurses have an active caseload of about 45 patients, 20 of whom are new patients and the rest of whom are going through surgical treatment.

In a typical month, Sveningson actively works with about 45 patients. About 20 are new patients who have just gotten a breast cancer diagnosis. The rest are those she is following through surgery.

"I’m the person they can call to point them along the way and give them any information they need," she says.

Sveningson is based in the radiology portion of the breast clinic, where many patients get the first information about their diagnosis. She calls patients within a few minutes after the radiologist calls to tell them their breast biopsy is positive.

"I am there to provide support and education and to coordinate the appointments they will need," Sveningson says.

"These patients are in an absolute state of shock. On the first day, I answer their most urgent questions and call them again the next day to talk further. The next day, they want to know what it means. On the first day, they’re just blown out of the water by the diagnosis," Sveningson says.

She reviews the pathology report with patients and sends them packets of information about breast cancer and treatment options.

"I can meet with them in person, but since so many live a distance away, I do a lot of work on the telephone," Sveningson says.

The health system serves a large rural community in parts of North Dakota, South Dakota, and Minnesota, and some of the women who come to the clinic live as far as 200 miles away.

Sveningson does an initial intake assessment and enters the information into the health system’s computerized charting system. The assessment includes their concerns and goals and any barriers to appointments.

"The surgeon can look at the information and know what we know about the patient," she says.

Depending on the diagnosis, patients may need a surgical consultation or a medical oncologist consultation. Sveningson helps set up an appointment and coordinates, whenever necessary, with the patient’s primary care physician.

Before the program started, patients would get the initial diagnosis and then have to wait seven to 10 days to see a physician for follow-up.

"They would get information from friends or go onto the computer and search for themselves. We were concerned about whether they were going to get reliable information from a reputable web site," she says.

Sveningson helps patients navigate through the complexities of the health care system. She explains the treatment options and gives the patient the information that will help them choose the option that’s best for them.

"A lot of it is knowing that what they are feeling is normal and that it’s not unusual for people in their position to have problems sleeping or eating," she says.

Sveningson prepares the patients for the surgical consultation, educates them about what to expect from the appointment, and gathers the information a surgeon may need when seeing the patient.

She often accompanies the patients when they see the surgeon and follows up later to clarify any information they don’t understand and answer questions. "We are available to be their second set of ears when they see the surgeon. Some people don’t want us there, but we try to touch base and make sure the surgeon is aware of their story," Sveningson says.

Patients are encouraged to call

She encourages the patients to call her with questions and concerns, but she also calls them at regular intervals.

"Women are very overwhelmed by the diagnosis of breast cancer. We have this culture of stoicism that says you handle whatever is thrown your way. They won’t always call and say they need help. When I call them, they appreciate it greatly," Sveningson adds.

A lot of patients are afraid to bother someone by calling with questions, or they may call and the surgeon isn’t available to talk. The breast cancer case managers often can answer the questions, she adds.

Once the patient has had surgery, Sveningson starts preparing them regarding what to expect for their consultations to medical oncology and radiation oncology.

After patients receive a treatment plan, Sveningson follows up to help them understand the complexities of the cancer treatment.

"Patients often don’t understand the treatment plan, and they are fearful of having chemotherapy and radiation. I’m able to re-emphasize how cancer is staged and how a treatment plan is determined. I give them the message that breast cancer can be cured," she adds.

Contact with the breast cancer case manager tapers off when the patients’ postsurgical treatment begins.

"By the time they start chemotherapy, they have gotten through the major complexity of navigating the system and they need to be followed closely by medical oncology. At that point, most of their questions are related to their treatment," Sveningson reports.

Since the position was established, the health center has not received any complaints or negative feedback from breast cancer patients. A patient satisfaction survey showed high satisfaction with the program.

"We know that if one person has a negative experience or feels like they fell through the cracks that they are going to tell 10 people. We are here to make sure that doesn’t happen," Sveningson says.