ORLANDO—The National Initiative on Cancer Care Quality (NICCQ) has presented preliminary results from its ongoing survey of breast and colorectal cancer patients in five cities. The study, now in its second year, was prompted by a 1999 Institute of Medicine report that found serious gaps in the quality of care for many people.
"Today, we cannot guarantee that all patients with cancer will get the quality of care known to be associated with optimal outcomes," said Ezekiel J. Emanuel, MD, PhD, of the National Institutes of Health. Dr. Emanuel is the head of the NICCQ task force, which presented the data at the 38th Annual Meeting of the American Society of Clinical Oncology (ASCO).
The good news for cancer care, said task force member Eric Schneider, MD, of the Harvard School of Public Health, is that cancer patients generally rate their care higher than do other adults assessing their overall care. The panel stressed that the NICCQ patient survey information and quality of care would be verified through an assessment of medical records.
According to Dr. Emanuel, one of the reasons for choosing the five cities for the study—Houston, Cleveland, Los Angeles, Kansas City, and Atlanta—is their high rate of minorities and mixed rates of managed care. "We’re also interested in how people with low education and low socioeconomic status are navigating the system," he said. NICCQ researchers hope to identify 5,500 patients and expect that about 2,800 will be interviewed and have their records reviewed. The current report included 629 patients ranging in age from 21 to 80; all had been diagnosed in 1998 with either breast cancer (stages I, II, or III) or colorectal cancer (stages II and III) and treated in a variety of in- and outpatient settings.
After a year in which study instruments were developed, the researchers began patient surveys (still ongoing) in mid-2001. According to Dr. Schneider, more than 85% of patients agreed to have their records reviewed. Among the survey questions reported at ASCO were:
- What kind of surgery was your first surgery to treat your breast cancer? 60% said breast-conserving surgery; 40% said mastectomy. "That varied according to stage," Dr. Schneider said. Patients diagnosed with lower stage disease were more likely to get breast-conserving surgery. "We don’t know how accurate this and other responses are until we have more detailed information from the clinical records," he noted.
- Did you complete all the chemotherapy that was originally planned? Nearly 100% of patients said yes. The response did not vary by stage.
- Are you still taking tamoxifen(Drug information on tamoxifen)? According to Dr. Schneider, patients with higher stage breast cancer started at a higher rate, but by year 3, only 75% were still taking the drug. "This result might represent progression of disease or other factors," Dr. Schneider said. "We’ll know more when we get the medical records."
- Did any doctor tell you that other members of your family should be tested for colorectal cancer? More than half of patients (55%) reported that they were advised to have a first-degree relative screened. "Obviously, there is an opportunity for improvement there," Dr. Schneider noted.
- Thinking about the first 6 months after you were told you have cancer, how much of a problem were delays in getting results of tests you needed? Of the breast cancer patients, 80% said it wasn’t a problem. Of the colorectal cancer patients, 90% said there was no problem in the first 6 months.
- Thinking about the first 6 months after you were told you have cancer, how much of a problem was coordinating your care among different doctors’ offices? Of the breast cancer patients, 84% said "no problem," and 90% of colorectal patients agreed.
- What was your role in making the decision about whether to have a mastectomy or lumpectomy? Was the role more than you wanted, less, or about right? Most patients (95%) said that their role is about right. "This is a bit after the fact, and people do revise their views sometime depending on their outcome," Dr. Schneider said. "We can’t necessarily put too much on this. But it is in contrast to other diseases in other settings. When we have more data, it will be interesting to compare them."
- Did you have any side effects that you were not told about beforehand? Surprisingly, high percentages of patients said they had unexpected radiation and chemotherapy side effects, Dr. Schneider said. There was a higher rate of unexpected radiation side effects among colorectal than breast cancer patients.
The patient survey should be completed by the fall, Dr. Schneider said. He appealed to physicians for help in obtaining the medical records. "It’s an important initiative, and we’ve taken great pains to make sure that privacy will be protected," he said.
NICCQ is working closely with the National Cancer Institute and their ongoing quality of care study "so we don’t have to reinvent measures," said Joseph S. Bailes, MD, of US Oncology, Inc. "We are committed to following up," he said. "The data won’t just sit there."
