In the spring of 1999 the Institute of Medicines National Cancer Policy Board issued its report "Ensuring Quality Cancer Care." The report charged that quality care is available only erratically around the country and detailed recommendations on how to measure and improve the quality of care.
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Several national umbrella groups have taken up the mantle of the IOM report. The National Dialogue on Cancer, for example, which includes as partners more than 125 prominent individuals and organizations, has made improving the quality of cancer care one of its main issues.
"What were trying to do is mobilize widespread support across the cancer community for the aggressive and full implementation of the recommendations of the IOM report," said William Roper, M.D., dean of the School of Public Health at the University of North Carolina at Chapel Hill and a member of the NDC steering committee.
Department of Health and Human Services Secretary Donna Shalala, for her part, recently approved the creation of the Quality of Cancer Care Committee (QCCC), a trans-agency task force with representatives from NCI, the Department of Veterans Affairs, the Health Care Financing Administration, and the Food and Drug Administration among others.
Barriers
The IOM report noted that lack of quality in cancer care can result from both barriers to receiving health care in general and from issues specific to cancer. "In a general way, very clearly individuals who are in the poor and underserved population have a substantially higher incidence and mortality rate of cancer," explained Harmon Eyre, M.D., chief medical officer of the American Cancer Society. "The lack of individual access to any care oftentimes results in delayed diagnosis, far more advanced disease at the time of diagnosis, and worse outcomes." NCIs proposed FY2002 bypass budget includes $50.6 million for programs intended to reduce cancer-related health disparities and $21.5 million for initiatives specifically addressing the quality of cancer care.
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In an interview, Ellen L. Stovall, president of the National Coalition for Cancer Survivorship in Silver Spring, Md., applauded the development of these guidelines but expressed some concern about howand whetherthey would be used. "The more difficult problem becomes the accountability for using them and what assurance the patient has that any guidelines are being followed," she noted.
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In one of the first large-scale responses to the IOM report, the American Society of Clinical Oncology earlier this year started an 18-month pilot study intended to develop a national monitoring system for cancer care. The study, called the National Initiative on Cancer Care Quality, was funded with $1 million from the Susan G. Komen Breast Cancer Foundation, Dallas, and is being conducted by researchers at Harvard University and the RAND Corporation.
It will follow several hundred patients with a diagnosis of breast or colon cancer throughout the course of their treatment. Joseph S. Bailes, M.D., a medical oncologist in Houston and a former president of ASCO, explained, "We will for instance look at the actual dose of drug thats given, we will look at pathology, we will look at how the referral system works. Thats the quantitative aspects. One unique aspect of this is that we will actually do patient surveys [to study more qualitative aspects]. For instance, how did you perceive the quality of care? Was the doctor available for after-hours questions?"
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The ASCO study will take that into account, said Bailes, by using the American College of Surgeons National Cancer Database to identify index casespatients who will then be followed wherever they receive care.
Although it shares similarities with ASCOs study, the NCIs Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) is clearly a more ambitious response to the IOM report. A 5-year, $40 million grant program, CanCORS has received letters of intent from 40 research groups, of which somewhere between five and 13 will be funded, said Arnold L. Potosky, Ph.D., a health services researcher in NCIs Division of Cancer Control and Population Sciences and the main contact for the program.
"Were going to form a consortium of research institutions or entities which will band together to look at longitudinal processes and outcomes of cancer care for both colorectal and lung cancer," explained Potosky. Six thousand patients with each type of cancer will ultimately be enrolled. "The idea is to go into the community and sample patients from all walks of life and treatment in all sorts of delivery settings, and to look at the kinds of care theyre getting, the reasons for variability in that care, and to connect that care to various outcomes, including . . . patient-oriented outcomes [such as] health-related quality of life and treatment satisfaction."
Full applications for CanCORS are due in January 2001, and peer review will take most of the Spring and Summer. "Youre not looking at this group to really get started until September 2001," said Potosky, but the grantees will probably take about a year to form themselves into a collaborative research consortium. "Well probably start enrolling patients in the fall of 2002. We should have preliminary data in a year or two after that."
Some observers of the quality-of-care issue express concern that there seems to be some overlapand perhaps some duplication of effortin the ASCO and NCI initiatives. "I hate to see anyone squandering any resources to duplicate efforts in that area," said Stovall. "Im hoping that they can find ways to distinguish their work from one another."
No Unneeded Duplication
Both Potosky of NCI and Bailes of ASCO deny that there is unnecessary duplication of effort and both use the word "complementary" to describe the two studies. Potosky, for example, points out that, "If youre looking at quality of care you want to look at whether people are receiving the type of treatments that have been shown to reduce mortality and then follow those patients to get their outcome. To that extent there might be some overlap in what kinds of data youd want to collect. It just makes sense. On the other hand, the samples might be quite different."
In particular, the NCI program will look at a much larger number of patients, and the patients will be identified from population-based registries. Patients in the ASCO study will come from the hospitals contributing data to the American College of Surgeons National Cancer Database. This introduces the possibility of bias into the ASCO study, noted Robert A. Hiatt, M.D., Ph.D., deputy director of NCIs Division of Cancer Control and Population Sciences.
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Asked whether results from either study will arrive with enough dispatch, Stovall said, "Of course its not moving fast enough. Patients are very impatient. We want it all done yesterday. The whole health-services-research area moves way too slowly for us."
Nevertheless, said Roper, "I think the country at large has finally awakened to the importance of improving the quality of health care generally. What is happening with cancer care is only part of a much larger set of activities that are underway across the nation. Im quite persuaded that its going to be successful."
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