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NCCN Takes First Steps in Creating Outcomes Database

NCCN Takes First Steps in Creating Outcomes Database

FORT LAUDERDALE, Fla--Preliminary data on the treatment of breast and colorectal cancer patients at National Comprehensive Cancer Network (NCCN) member institutions show that the members are in compliance with the network's guidelines, Jane Weeks, MD, MSc, of the Dana-Farber Cancer Institute, said at the second annual NCCN conference.

In addition to its cancer guidelines initiative (eight guidelines were presented at last year's meeting and eight preliminary guidelines at this year's conference), the NCCN has taken the first steps toward the creation of a comprehensive, uniform, prospective outcomes database, Dr. Weeks said.

The data will be used to monitor adherence with guidelines at NCCN institutions and will ultimately help define optimal strategies for managing common cancers.

Dr. Weeks described early results of two ongoing projects of the NCCN's Outcomes Committee. These projects are laying important groundwork for the outcomes effort. First, a tumor registry project is using existing data to look at patterns of care within the network's member institutions and comparing them to national benchmark data. Second, a pilot study is underway that will prospectively collect data on key quality-based outcome indicators in breast cancer patients at five NCCN institutions.

Care Surpasses National Norms

The tumor registry project collected data on the treatment of breast and colorectal cancer patients submitted by nine member institutions during 1993, 1994, and 1995 to the National Cancer Data Bank (NCDB), a national tumor registry compiled by the American College of Surgeons. These data were then compared with national data published by the NCDB.

"We were gratified to see that the care being delivered in NCCN institutions, at least in the areas we looked at, appeared to be close to the levels that we would expect," Dr. Weeks told Oncology News International. Also encouraging was the fact that the patterns of care in those institutions were in compliance with the NCCN guidelines.

Specifically, these very preliminary data showed that a greater percentage of patients with stage II breast cancer treated at NCCN institutions received adjuvant chemotherapy, compared with the national data (90% versus 58%). Similarly, the rate of breast-conserving surgery in patients with stage I or II breast cancer was about 10% higher in NCCN institutions than in the nation as a whole (52% versus 42%).

Likewise, the use of adjuvant chemotherapy in patients with stage II or III colon cancer occurred at a much higher rate at NCCN institutions, compared with national benchmark data.

The analysis further showed that, at NCCN institutions, the majority of patients with rectal cancer underwent sphincter-sparing surgery. No national data are available for comparison.

There are several drawbacks of the tumor registry project, Dr. Weeks pointed out: The NCDB data are incomplete and are not collected uniformly everywhere. Also, no information on such factors as comorbidity is included.

Breast Cancer Pilot Study

The prospective outcomes database that the NCCN is poised to amass will not be subject to these drawbacks, she said. Ultimately, this project will provide data on a wide variety of outcomes, such as response, recurrence, survival, hospital days, employment status, days lost from work, and performance status.

The pilot study involves five NCCN institutions: City of Hope, Dana-Farber, Fox Chase, M.D. Anderson, and Roswell Park. Together, these centers expect to provide data on approximately 4,000 to 5,000 breast cancer cases per year.

Before accumulating those data, the NCCN institutions had to agree on which data to collect. The result was the creation of the data dictionary--a voluminous document that specifies exactly which data to collect and how to define every variable. "The stakes are high," Dr. Weeks said, "because once an undertaking of this magnitude is begun and data are collected, it is exceedingly difficult to change the system."

The second task was to pilot test strategies for data collection and analysis. The NCCN encouraged the five institutions involved in the pilot study to use whatever data collection strategy was already in place at their centers. However, the key was to make sure that those existing data collection mechanisms could be modified in such a way as to lend themselves to the contribution of data to a single database, she said.

The third and final phase, which is slated for completion in July, is the actual collection of data on all breast cancer cases in the five centers. In the future, similar outcomes data will be accumulated for other common solid tumors.

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