Knowledge Is Power: How outcomes statistics can help patients evaluate treatment centers

Survival Statistics Can Help Patients Make Treatment Decisions

SUMMARY

At Cancer Treatment Centers of America, we publish our clinical outcomes to help patients make more informed choices.

How do you decide where to go for cancer treatment? Will your chance of surviving be significantly different at one accredited hospital versus another? Are some hospitals or treatment centers more successful with your type and stage of cancer than others?

Though it might seem like the answer to all these questions should be yes, the actual answer is: it depends. For instance, it depends on whether your tumor is relatively nonthreatening or requires only standard treatment to cure.“With early diagnosis and a standard treatment procedure, a person’s chances would be about the same at virtually any accredited treatment center,” says Edgar D. Staren, MD, PhD, MBA, senior vice president for clinical affairs and chief medical officer at Cancer Treatment Centers of America® (CTCA ). “With advanced stage or very difficult cancers to treat, however, patients need to go for treatment where the medical staff is experienced with that cancer and has a good track record.”Len Lichtenfeld, MD, deputy chief medical officer of the American Cancer Society (ACS ), agrees: “Pancreatic cancer, for instance, is very difficult to treat and some institutions are better at it than others.”

Knowing that where you go for treatment may influence your survival outcome, the question is: Where can you find the statistics that indicate how well a particular treatment center is doing? And if you can find the data, what can the numbers mean for you?

Where Are the Data?

One place to find national cancer statistics is the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER ) database. SEER collects information about cancer and survival from U.S. cancer registries, compiles a variety of reports based on the data, and posts them on its website.

SEER publishes data for 41 different cancer types and sites and analyzes them in a number of different ways, including patient gender, race and ethnicity, type and site of cancer, age at diagnosis, and length of survival. But what does the SEER data tell you?

“Patients can get a general reference from the SEER data as to what their [survival] outcome may be for a certain type and site of cancer,” says Dr. Lichtenfeld, “but only as an average across the population and only at first diagnosis.”

SEER gets its data from cancer registries, which all accredited cancer hospitals and treatment centers must keep. Each registry is audited by the American College of Surgeons every year as part of the accreditation process. SEER does not list data by treatment center, however; and though all accredited treatment centers have this data, only a few of them make the information available to the public.

“There are some medical centers and cancer hospitals that publish survival outcomes data,” says Christopher Lis, vice president of research and development at CTCA . “Among them are MD Anderson Cancer Center, Cleveland Clinic, and CTCA .”

According to Dr. Staren, CTCA believes that publishing outcomes data is an extremely important part of the care model. “Having this information provides patients with the feeling of control they so desperately need,” he says. “We believe patients should be able to find this information early and easily and that the data should be updated and improved continuously.”

This chart depicts a comparison of advanced-stage (defined as distant metastasis) survival rates at CTCA hospitals to publicly available data from the National Cancer Institute’s Seer program.
The estimated survival rates from CTCA were based on a relatively small sample of 71 available advanced-stage breast cancer patients and therefore were subject to a high degree of variation. As a result, these estimates may not be entirely replicated in the future when a larger CTCA sample is available. CTCA makes no claims about the efficacy of specific treatments or the delivery of care. Cancer is a complex disease, and each person’s medical condition is different. Cancer patients should not expect the same results when treating at a CTCA hospital.

What Do the Data Mean?

Cancer survival data do not work like a crystal ball. The numbers don’t tell you— a unique individual—how long you can expect to live. They tell you only how long a specific group of patients lived who had been diagnosed with a certain type and stage of cancer. But compared with what? At CTCA patient survival rates are compared with the SEER national averages, and both sets of data are published on its website.

For example, a comparison of survival rates at CTCA hospitals with data from SEER shows that a larger percentage of CTCA breast cancer patients were living six months to four years after their diagnosis than a similar group of patients selected from the SEER database. Although this sounds very positive, the ACS ’s Dr. Lichtenfeld cautions that there are many variables in both data sets that may affect the comparison, including “the number of patients, the type and stage of disease, age, whether they were treated at one medical center from beginning to end, even whether the majority of patients have insurance.”

Because of that, CTCA asked Chengjie Xiong, PhD, an independent biostatistician and an associate professor at Washington University in St. Louis, Missouri, to conduct an analysis of the raw data from CTCA and SEER for the 10 most prevalently treated cancer types at CTCA .

To do so Dr. Xiong first examined the characteristics of the CTCA sample for each cancer type and then selected a patient population from the SEER database with similar characteristics. The SEER group included patients whose age at diagnosis was within the same age range as those in the CTCA sample at diagnosis. He also made sure that the stages of severity and the tumor sites from the SEER comparison sample were similar to those in the CTCA sample. His intent was to make the two data sets comparable.

“Because the study is not randomized,” says Dr. Xiong, “there could be other variables related to survival that we don’t know about, but we have matched the two data sets to a certain degree in terms of some of the most important factors that we know affect survival outcomes, such as age at diagnosis, cancer severity stage, and cancer site.” According to Dr. Xiong, some of the comparisons presented on the CTCA website between CTCA patients and the SEER group are “statistically significant but not 100 percent predictive.”

Dr. Xiong says that the best way to interpret any comparison between a treatment center’s outcomes and the SEER data is to look at the outcomes as an indication of how a group of patients fared at that treatment center compared with a fairly similar group of patients in the SEER database.

The comparison does not predict how long a particular patient with cancer will survive,” Dr. Xiong says. “These data are only an indication of how long a certain group of patients survived. If at that group level, a treatment center’s patients fared better than the SEER average for the same type and stage of disease, that center may be a better choice for treatment. I emphasize ‘may’ because this is not for sure. It is just an indicator, not a guarantee.”

Today many patients are interested in survival data, says Catherine Klisz, a CTCA oncology information specialist. “Patients who call are more educated about cancer and its treatment than ever before,” she says. “Many of them have already looked at CTCA outcomes data on our website. The more statistical information we can give them, the more comfortable they feel.”

Find the Data

Some medical centers publish survival outcomes statistics on their websites. Some provide data for a number of types of cancer; others provide data for only selected cancers. Several compare data from their own registries with the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER ) database. Following are the URL s for survival outcomes information published by SEER and several U.S. cancer treatment centers:

• Cancer Treatment Centers of America®
  Under Cancer Treatment Statistics and Results on its website, CTCA publishes survival, quality-of-life, patient experience, and speed-of-care data for 10 of the most common cancers it treats. CTCA compares its data with similar data from the SEER national database.
• Northwestern Memorial Hospital
  Northwestern Memorial publishes on its website survival “report cards” for 11 different cancers, stages 0 through V, along with patient satisfaction survey data.
• Taussig Cancer Institute, Cleveland Clinic
  Cleveland Clinic publishes a yearly outcomes book. The most recent, 2009 Outcomes, is available in PDF format on its website or as a print document you can order.