Interim results from a nationwide survey suggest that patients are generally satisfied with the quality of cancer care they receive, and most report receiving appropriate care. This contrasts with a 1999 report released by the Institute of Medicine suggesting that, although the extent of the problem was unknown, gaps in cancer care exist for many people with cancer.
After the release of the Institute of Medicine report, the American Society of Clinical Oncology (ASCO) and a number of other medical societies joined forces to establish the National Initiative on Cancer Care Quality (NICCQ), a national, population-based survey of patient responses to a variety of questions about their care. The researchers turned to breast and colon cancer first, both because they affect large numbers of people and because a number of quality control measures were well established for these cancers. Most of the 2,400 patients who responded to the survey have given permission to access their medical records, so eventually researchers will be able to link patient-reported satisfaction with care and records of actual care.
The majority of patients reported that they received "very good" or "excellent" care. Among breast cancer survivors, 55% reported excellent care and 29% said they received very good care. Among colorectal cancer survivors, 52% said they had excellent care and 28% reported very good care. Survey results also suggest that cancer physicians are doing a good job of offering recommended care and following treatment guidelines.
"On the whole, were seeing better performance in these areas than in other diseases like cardiovascular disease," said researcher Eric C. Schneider, M.D., of the Harvard School of Public Health in Boston. This suggests, he said, "that perhaps there was some overstatement in the Institute of Medicine report."
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Offering patients enrollment in clinical trials, if appropriate, was also deemed a marker of good care (see Stat Bite, p. 1189). Among the under-55 patients questioned, 57% of those with breast cancer and 93% of those with colorectal cancer said that their physicians suggested they enroll in clinical trials. However, the percentages were dramatically lower in older patients. In those patients ages 55 to 65, 28% of breast cancer patients and 24% of colorectal cancer patients said they were offered clinical trials. Among those older than 65, just 15% of breast cancer patients and 13% of colorectal cancer patients were told they were eligible for clinical trials.
One area in which physicians could improve is warning patients of potential side effects, said Katherine L. Kahn, M.D., a coordinator of the study at RAND Corp., and the University of California at Los Angeles. "A substantial number of patients reported they did not feel fully informed at the time," she said, with a quarter of breast cancer patients and a quarter of colorectal cancer patients reporting unexpected side effects from therapy.
The coordination of cancer care is potentially a major impediment to quality care. However, 80% of women with breast cancer and 88% of people with colon cancer reported that they had "no problems" coordinating their care in the first 6 months of treatment.
By and large, physicians fared well on measures of follow-up care. For example, 75% of breast cancer patients reported that they were still taking tamoxifen 4 years after treatment, as guidelines suggest, Schneider reported. Among those without possible contraindications such as severe side effects or current disease, 84% of breast cancer patients were taking tamoxifen, he said. Oncologists were more likely than primary care physicians to prescribe tamoxifen to their patients.
Although rates of screening follow-up varied from city to city, most breast and colon cancer patients reported adequate follow-up care. Overall, 98% of breast cancer survivors were offered mammograms, whereas 88% of those with colon cancer were offered colonoscopies. Among those patients who had had ostomies, almost 95% of those younger than 65 had follow-up colonoscopies, compared with 88% of those ages 65 to 74 and 79% of those 79 and older.
Screening of family members was less consistent. Just 57% of colorectal cancer patients said their doctors told them that their family members should be screened for the disease. Age played a role as well: 74% of colorectal cancer patients responded that they had been told that family members should be screened, compared with 49% of those 65 and older.
Study Details
Patients were identified 2 years after diagnosis from records drawn from the National Cancer Data Bank; another 2 years were required to get institutional review board approval of the study to contact the patients. Originally, 5,347 people in Cleveland, Atlanta, Kansas City, Houston, and Los Angeles were eligible for the survey. Of those, 15% were unreachable and 15% were deceased (9% of the breast cancer patients and 27% of the colorectal cancer patients). Among eligible people, 2,404 responded to the survey and 2,149 have given consent for their medical records to be abstracted. Final results, including information from the medical records, should be available by the ASCO meeting next year, Schneider said.
"The data seems encouraging," said Andrew G. Glass, M.D., of the Kaiser Permanente Center for Health Research in Portland, Ore. "However, my concern is that interviewing people that long after treatment has the potential to shade peoples responses toward positive outcomes because the people answering the survey will have survived this terrible disease for a few years." The relatively high death rate among patients with colorectal cancer means that a high percentage of those with the disease never completed the survey. In some cases, the surveys were completed by family members of the patients. This surrogate data is helpful, but the accuracy of such responses is unknown, he said.
In addition, Glass cautioned, the sample that the researchers are using comes from a hospital-based population. Although about 85% of cancer patients are treated at these hospitals, those who are not covered are also presumably those least likely to have health insurance or access to appropriate care. "I have no concerns about the caliber of research being done," he said, "but there are potentially systematic concerns with the sample. There may be no way of getting around this, but we shouldnt forget these limitations when analyzing the results."
Future Work
In future work, Schneider and his colleagues plan to more closely examine the effects of geographical variation, potential age bias, the importance of specialist versus generalist care, and the effects of being treated in teaching hospitals. Such variations may point toward ways of improving overall care across the country, Schneider said.
"I believe that one of the most important findings from the NICCQ relates to the overall ratings patients gave their health care," said Michael Richards, M.D., Britains national cancer director and chair of palliative medicine at Guys-St. Thomas Hospital in London. "This demonstrates that, both for breast and colorectal cancer, the ratings were considerably higher than for a general Medicare population. However, the findings also demonstrate the scope for improvementsespecially in colorectal cancer," he said, noting that a large U.K. cancer survey showed comparable results.
Richards noted that this is the first large study to combine medical record linkage with a survey of patients own views on their care. The advantage of this approach is that it may illuminate discrepancies between the two data sources. In sum, he said, "the NICCQ study is extremely important and will, over time, lead to substantial improvements in the quality of care given to patients in the U.S.A."
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