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Cancer Care Quality Group Presents Preliminary Report

Cancer Care Quality Group Presents Preliminary Report

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? 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
  • 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

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


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