Survivors of Breast Cancer Differ on Who Should Manage Follow-Up Care

August 2, 2017, by NCI Staff

A new study affirms the concerns and confusion that some cancer survivors have voiced about which health care providers should be directing their long-term care.

In the study, which involved a survey of a large group of breast cancer survivors, there was substantial variability in survivors' preferences for who they would like to manage their health careafter the completion of active cancer treatment: their oncologist or primary care doctor.

Although most women in the study preferred that their primary care doctor deliver general preventive care and ongoing treatment for conditions other than cancer, a large minority wanted this type of care to come from their oncologist. And almost all women wanted their oncologists to handle follow-up mammography as well as screening tests for other cancers, aspects of care that are traditionally overseen by primary care physicians.

“There’s a concern that there aren’t clear enough delineations of roles for the providers and who’s delivering what care” for survivors, said Lauren Wallner, Ph.D., an assistant professor at the University of Michigan, who led the research. “If patients prefer to go to their oncologist for types of care that a primary care provider normally delivers, there is a chance that patients might not get that care.”

The study was published July 12 in the Journal of Clinical Oncology.

Some Care Preferences Differ by Education, Race

Previous small studies using focus groups have shown similar trends in what patients prefer when it comes to managing their longer-term health care. Dr. Wallner and her colleagues wanted to examine whether these findings could be confirmed in a much larger, more diverse group.

The researchers used the Surveillance, Epidemiology, and End Results (SEER) registries in Georgia and Los Angeles county to identify and reach out to women with early-stage breast cancer who were newly diagnosed in 2014 or 2015. Out of the women contacted by the researchers, nearly 2,400 had a primary care doctor and agreed to complete a survey about their ongoing medical care.

At an average of 8 months after surgery for breast cancer, women reported their preferences for who would deliver four categories of care going forward: follow-up care for breast cancer (including mammograms), screening for other cancer types, general preventive care, and treatment for current or potential future medical conditions other than cancer, including diabetes and heart disease.

Almost all participants preferred that their oncologist handle their mammograms (93%) and screening for additional cancers (91%). A substantial minority also preferred that their oncologists direct general preventive care such as vaccinations (21%) and care for medical conditions unrelated to their cancer (16%).

The researchers were surprised to find differences along racial and educational lines in this second set of preferences, explained Dr. Wallner.

For example, black women were twice as likely to report a preference that their oncologist provide general preventive care than were white women. And women with a high school education or less were more likely than women with more education to prefer that their oncologists handle care for their health problems other than cancer.

These preferences were seen even though two-thirds of study participants had been with their current primary care provider for more than 2 years, and about three-quarters had seen the primary care provider at least once since their cancer diagnosis.

Clarity about Survivorship Care Roles Needed

While preferences for care are very personal, and there are no ‘right’ or ‘wrong’ ones, patients may fall through the cracks in terms of getting routine care if they’re waiting for their oncologist to order tests or prescriptions that are outside their normal focus, explained Dr. Wallner.

“This kind of data is very important, because it tells us that we’re not doing a good job of having a conversation with people as they finish treatment about what’s appropriate” in terms of follow-up care, said Julia Rowland, Ph.D., director of NCI’s Office of Cancer Survivorship.

Barriers exist in transitioning routine cancer follow-up care to primary care doctors, including that “primary care clinicians know they can deliver [this care], but they’re anxious about it, so they’re quick to refer back to oncology,” Dr. Rowland explained.

“Oncologists also don’t believe that primary care doctors know how to follow [patients] for cancer—we’ve done research on this,” she added. “And then there are attachments on all sides. We all get attached to our care providers, and oncologists get attached to their patients.”

Dr. Wallner said she believes that better education, communication, and clear clinical guidelines are needed to make both health care providers and patients comfortable with the transition back to primary care after treatment ends and with letting primary care doctors handle aspects of follow-up care more traditionally associated with oncology.

Survivorship care plans could also help, added Dr. Rowland. “But if we think [survivorship care planning] is just generating a piece of paper and handing it to a patient and saying ‘have a nice life,’ we’ve failed,” she said.

“It’s really about the conversation that accompanies the completion of a plan," Dr. Rowland continued. "This study suggests that one of the important functions that a [survivorship] care-planning meeting can serve is facilitating coordination of care—figuring out who’s responsible for what care going forward.”

A Growing Number of Survivors

The current study has some limitations, cautioned Dr. Wallner. For example, all of the participants had early-stage cancer with a relatively high survival rate and low levels of treatment-related long-term side effects.

In addition, all of the participants had finished their cancer treatment very recently before being surveyed.

“It’s absolutely possible that, further into survivorship, their preferences may be different,” she commented. Her team hopes to follow the women for up to 5 years after diagnosis to see if preferences change and how follow-up care gets delivered.

Figuring out how to seamlessly deliver follow-up care in an already overloaded health care system will only become more important in the coming years, concluded Dr. Rowland.

“We know there’s going to be a big increase in people diagnosed with cancer—not because incidence is rising, but because the population is aging,” she said. “The biggest challenge we face now in survivorship science and care is how to best care for this growing population.”