Cancer Survivorship Care is Crucial, But Some Groups Are Missing Out

As more patients are surviving living longer, cancer centers across the nation have been putting focus on survivorship care. However, according to a recent study conducted at the University of Alabama at Birmingham Schools of Public Health and Medicine, disparities among patients who receive instructions for this follow-up care still exist.

“I find that a lot of my patients either get lost to follow-up or end up coming to me after not having clear instructions for what their follow-up should be, so I wanted to try to look into a larger, national database to see if we could come up with some hard numbers to suggest why this might be the case,” study author Rebecca C. Arend, M.D., assistant professor in the division of gynecologic oncology at the University of Alabama at Birmingham, said in an interview with CURE.

The researchers surveyed more than 1,400 patients — 954 who had breast cancer and 492 who had gynecologic cancer (cervical, endometrial and ovarian cancer). They asked, “Have you EVER received instructions from a doctor, nurse or other health care professional about where you should return or who you should see for routine cancer check-ups after completing treatment for cancer?”

There were three available answers for the survey: “yes,” “no” and “not sure.” Those who reported back “not sure” were put into the “no” category, since, according to the researchers, the follow-up instructions were not clear.

Despite the existence of both National Comprehensive Cancer Network (NCCN) and Society of Gynecologic Oncology (SGO) guidelines regarding the importance of follow-up care for survivors of gynecologic cancer, women with these diseases in the study had lower odds of receiving follow-up instructions compared to their counterparts with breast cancer (63 percent).

“I think this is probably multi-factorial,” Arend said. “One thing is that there is just more awareness around breast cancer. It’s more common, so women who are diagnosed with it may have more friends who were diagnosed, so they’re more comfortable talking about it.”

Proper post-cancer care for gynecologic cancers can include frequent pelvic exams. And as the research world continues to work toward finding better biomarkers and screening techniques to catch recurrences in the earliest possible stages, gynecologic cancer still won’t be caught without proper follow-ups, according to Arend.

“What’s probably more important is that they just go to the doctor regularly after they’ve been diagnosed,” she said. “In our personal practice, a lot of times we’ll see someone who shows up with a recurrence that has been lost to follow-up that may have been caught sooner had they been more adherent to what the recommendations are in terms of things like pelvic exams every six months.”

Cancer type was not the only predictor of whether or not a survivor received instructions on their follow-up care. The researchers also found that among the breast cancer cohort, those with a yearly income under $25,000 were 47 percent less likely to receive a survivorship plan. Conversely in the gynecologic cancer group, the only predictor was age: Older patients were more likely to receive follow-up plans than their younger counterparts.

Again, Arend noted that this finding is also likely multi-factorial, and contributing factors such as a patient’s education level, ability to get to and from the clinic and the ability to keep track of their appointments may explain these findings.

Across the whole study population, the researchers found that patients with higher body mass indexes (BMI) were 91 percent more likely to receive follow-up care instructions. However, Arend said that this might be more about the current state of the country, where the majority of Americans are overweight. Patients who were underweight — or even cachectic (physical loss of weight and muscle mass due to disease) – might actually be less likely to receive follow-up care, skewing the results, Arend explained.

“The average American is overweight,” she said. “If you look at the normal health and socioeconomic status in general, those patients tend to have overweight BMIs rather than normal BMIs.”

Moving forward, the researchers are hoping that their findings are a catalyst for public health initiatives that will work to diminish the survivorship care disparities that exist, ultimately improving outcomes.

“The goal of this was really to try to increase awareness and specifically public health knowledge of the fact that a disparity does exist and that it’s something that we should be aware of,” Arend said. “We know that outcomes are better if patients adhere to follow-up.”