AAMC Reporter: January 2006

As Cancer Patients Live Longer, Providers Shift Focus

By Anne Blank, Special to the Reporter

Increasingly over the past decade, clinicians at Dana-Farber Cancer Institute in Boston have been able to use mammography to detect breast cancer at an early, curable stage. What is striking about many of the institute's patients is that they are only in their 20s — nearly two decades younger than the age at which women are generally advised to get baseline mammograms.

The patients have a common history of having survived childhood cancer, specifically Hodgkin's lymphoma. The treatments involve radiation of the chest, which puts the patients at greater risk of developing breast cancer. The women thus need mammograms at a much younger age than the general population does, said Lisa R. Diller, M.D., director of the Perini Family Survivors' Center at Dana-Farber, and associate professor of pediatrics in Harvard Medical School's pediatric oncology department.

"Mammography appears to be a good screening method for these patients," she explained. "It picks up early breast cancers — and it needs to be done early."

The experiences of Dana-Farber, a teaching affiliate of Harvard Medical School, illustrate a vital fact of life about cancer today: Once primarily an acute-care specialty, cancer treatment is undergoing a fundamental shift that focuses heavily on chronic-care management, as well. The transition has become more noticeable as more patients have survived longer after being treated for cancer, and as more people have reached the cancer-prone years of 65 and beyond. From 1998 to 2002, according to the National Cancer Institute, the median age at which cancer was diagnosed was 67, with more than 26 percent of people between the ages of 65 and 74 being diagnosed. In contrast, among people aged 35 to 44, only about 6 percent were diagnosed with cancer.

The new realities are raising major issues for both clinicians and medical educators. One issue is whether the supply of oncologists will be large enough to satisfy the growing demand for their services. And if a feared oncologist shortage does occur, what will be the consequences for health care and medical education?

To shed more light on the supply question, the AAMC's Center for Workforce Studies is collaborating in a study with the American Society of Clinical Oncology (ASCO), which is financing the project. Investigators are collecting and analyzing data from graduating oncology fellows, prospective oncology fellows, oncology program directors, and practicing oncologists, both in educational institutions and in private practice. Preliminary results are expected to be released in June, with data analysis to continue for another six to 12 months, said Edward Salsberg, director of the AAMC's Center for Workforce Studies.

Michael Goldstein, M.D., Harvard Medical School

Some experts already cite anecdotal evidence suggesting that an oncology shortage is imminent. For example, community-based and academic oncology centers throughout the country have reported some trouble recruiting oncologists for their practices, said Michael Goldstein, assistant clinical professor at Harvard Medical School, staff physician in the hematology/oncology clinic at Beth Israel Deaconess Medical Center, and chair of the ASCO-AAMC workforce study.

"There is a feeling that people are working harder, and the demands on oncologists are increasing," Goldstein said.

If a shortage of oncologists does develop, Goldstein said, the solution to the growing need for long-term cancer care will be, first, to train more oncologists and, second, to have nurse specialists on staff to ease the burden on physicians. It also would be helpful to remove or streamline some of the administrative obligations that restrict physicians' time with patients, Goldstein said.

Likewise, a recent report on cancer survivorship by the Institute of Medicine (IOM) of the National Academies pointed to a growing need to educate more health care workers in cancer survivorship, and especially to give more nurses advanced training in oncology. The report, From Cancer Patient to Cancer Survivor: Lost in Transition, is available at the National Academies Web site.

Diller of Dana-Farber agrees. She sees an expanded role for nurse practitioners to work with oncologists in managing survivorship care. "A lot of the work done in caring for survivors is preventive care, patient teaching, anticipatory guidance, and health screening, all of which are very appropriate for nurse practitioners," she said.

Patricia Ganz, M.D., UCLA

Some oncologists stress a need to involve primary care providers in survivorship care. In fact, most cancer survivors are being cared for not by cancer specialists, but by primary care physicians, including family physicians, gynecologists, and urologists, said an IOM committee member, Patricia Ganz, M.D. Ganz is professor of medicine and health services in the schools of medicine and public health at the University of California, Los Angeles (UCLA), and the director of the Division of Cancer Prevention and Control Research at UCLA Jonsson Comprehensive Cancer Center. She is also a member of the ASCO board of directors and the National Cancer Institute's scientific advisory board.

"The cancer specialist is probably the person who has the most knowledge about the exposures that the person had, and the kinds of surveillance that they need," Ganz said, "but most patients are actually in the hands of their primary care physicians. I think, ideally, the patient might see the oncologist once a year, but in the interval they're being cared for by their primary care physician."

According to Goldstein, however, that model presents a problem for some patients, who may have become highly attached to their oncologists during the course of their treatment for what is an acute, life-threatening illness. Furthermore, he said, oncologists are highly attuned to the serious symptoms in their patients that may require further testing and evaluation, as opposed to symptoms that are simply innocuous side effects. A physician who is inexperienced in post-malignancy management may order expensive tests and scans in situations where they are not warranted, Goldstein explained.

Need for Tests

At the same time, a physician who is not familiar with the long-term effects of certain cancer treatments may neglect to do critical tests. Diller noted, for example, that some Hodgkin's lymphoma survivors she has seen with early breast cancer had been told by their primary care physicians to get a baseline mammogram at 35 or 40, the age for women without a history of cancer.

"It's not 100 percent clear after a patient completes cancer therapy who should take care of them," Diller said. "It's an impossible undertaking for cancer centers, tertiary care centers, or oncologists to do it alone."

In one of the more surprising findings of the IOM report, however, oncologists themselves may not have adequate training for managing cancer survivors.

"Few oncology and primary care health professionals have formal education and training regarding cancer survivorship," the report states.

One reason for this, Ganz explained, is that cancer has not been a mainstream subject area in traditional medical education. "Because of the drugs that we give and the complexity of treatment, standard exposure of trainees and medical students is very, very limited," she said.

While students may see patients who come in for acute cancer care, such as surgery and the follow-up radiation or chemotherapy treatment, Ganz observed, they often don't see patients who have already undergone therapy for the severe stage of their illness and are thus in what she called "the middle ground" — that is, "essentially disease-free, but living with the late effects of treatment."

At the UCLA and University of California, San Francisco, Medical Centers, educators are trying to address that situation by developing an innovative cancer survivorship program that will be integrated into the four-year medical school curriculum, the IOM report says. As the educational materials are developed, they will be available on the UCLA Cancer Education Projects Web site, and eventually to all medical schools through the AAMC's MedEdPORTAL, an online database of educational information and resources.

In addition to training medical students, educators face the challenging task of educating practicing physicians who may not have received training in cancer survivorship. At the Monroe Carell Jr. Children's Hospital at Vanderbilt University, pediatric oncologist Sadhna Shankar, M.D., M.P.H., is establishing a long-term follow-up clinic to monitor the potential side effects of cancer therapies given to childhood cancer survivors. In addition to the clinic's primary role of providing long-term care to patients, it will serve as an educational forum for medical students, fellows, and other medical specialists, in addition to oncologists, said Anderson Collier, M.D., assistant professor of pediatric hematology- oncology at the children's hospital.

And at Dana-Farber, Diller said trainees in such specialties as general medicine and pediatrics are coming through the three clinics at the Perini Family Survivors' Center to learn about patients and their survivorship care. Diller added that she gives lectures on cancer survivorship to residents and medical students.

Also important to the survivorship-care model is the education of patients. As with other chronic-care models, the patient's central role in communication between health care providers emerged in the IOM report as a key component of long-term cancer management.

"The patients in a lot of ways will be the owners of the information about their cancer therapy, about their cancer follow-up, and about the potential complications of their cancer," Diller said.

At Dana-Farber, the oncologist gives that information to the patient in the form of a treatment summary of the therapies provided, as well as long-term follow-up concerns, Diller said. The IOM report recommends that oncologists give patients with such treatment summaries, or "survivorship care plans," not only to help guide future care, but also to serve as an educational tool for both the patient and the provider, Ganz said.

"We need to improve the communication," she said. "We see this end-oftreatment survivorship plan as being a formalized way of doing this." However, few reimbursement plans, if any, cover the time required to develop individual treatment summaries for each patient, so they are not yet widespread. One recommendation in the IOM report is that third-party payers of health care should reimburse oncologists for providing survivorship care plans.

Ganz said: "I think clinicians feel that they just can't add it onto what they're doing without there being some reimbursement and some call for this being expected, usual care."

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