Study reviewed medical records and surveyed breast and colorectal cancer patients to assess quality of treatment
Orlando, FL - May 15, 2005 - The results of a major, five-year study commissioned by the American Society of Clinical Oncology (ASCO) that analyzed the care and treatment for people with cancer in the United States find that patients receive higher quality care than previous research indicated.
National Initiative on Cancer Care Quality
ASCO's National Initiative on Cancer Care Quality (NICCQ) study found that a large majority of patients with breast and colorectal cancers receive the recommended level of care necessary to treat their diseases. The study also found that the quality of care for cancer might be better than that for other diseases, including chronic medical conditions.
Researchers commissioned by ASCO from Harvard University and RAND Corporation looked at quality of care from patient diagnosis through treatment, management of side effects and disease surveillance. They found that, on average, patients with breast cancer received 86 percent of generally recommended care, based on 36 quality care measures established by the research team. Patients with colorectal cancer received 78 percent of generally recommended care, based on 25 established quality care measures.
In addition, the study found that most patients receive treatments appropriate for their disease - for example, 93 percent of eligible women received adjuvant therapy for breast cancer when appropriate - although in some cases treatment dosage was not always optimal.
ASCO and the NICCQ study
"ASCO launched and funded the NICCQ study to examine the feasibility of developing a national quality monitoring system for cancer care," said ASCO President David H. Johnson, MD, deputy director of the Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. "By finding out the extent to which people with cancer are receiving the recommended care, we will be able to better treat patients in the future."
Institute of Medicine report
ASCO undertook the study after an Institute of Medicine (IOM) report in 1999 analyzing current research indicated that some people with cancer did not receive the care known to be most effective at treating their disease.
The IOM report authors suggested that there might be a significant problem in the delivery of quality care, but that it was difficult to know the full extent of the problem, due to the absence of a national monitoring system.
"IOM asked that this research be undertaken, and ASCO took the charge," said Ezekiel Emanuel, MD, Chair of ASCO's Task Force on Quality Cancer Care, which oversaw the research. "The NICCQ study addresses the call of IOM's National Cancer Policy Board for more data about the quality of care for patients with a cancer diagnosis. The findings will be extremely useful to researchers interested in factors associated with the quality of care in a variety of healthcare settings.
"We knew when we began this study that cancer care was not perfect," Dr. Emanuel added. "Part of our goal was to target areas for improvement, so ASCO, other professional societies, advocacy groups, the National Cancer Institute, and others could direct their attention to these areas."
Research teams - methodology
Using data from patient surveys three years after diagnosis and also from in-depth review of medical records, the research teams sampled patients diagnosed with Stage I, II, and III breast cancer and Stage II and III colorectal cancer in 1998. Among 3,775 eligible survivors, 2,336 (63 percent) participated in a survey, 2,010 (53 percent) permitted the research team to review their medical records, and 1,765 (48 percent) had a complete set of medical records available for review.
The patients whose cases were analyzed were registered in American College of Surgeons-approved hospital cancer registries from five U.S. metropolitan areas with large and diverse cancer populations.
"The NICCQ results show the quality of care for patients with cancer to be higher than expected in the five target cities," said Joseph S. Bailes, MD, who initiated the study under his ASCO presidency in 2000. "The fact that the NICCQ study used a comprehensive data collection strategy gives us tremendous confidence in the findings. Few studies have interviewed patients directly as well as examined the full spectrum of data from patients' medical records, including pathology and surgical reports, as the NICCQ study did.
"This study represents a key step toward creating a national quality monitoring system for cancer care," Dr. Bailes added. "ASCO hopes to use the results of this study to work with others to develop such a quality monitoring system."
Opportunities indicated by the study
However, the study also indicated that there are opportunities to improve the quality of patient care in some areas. For example, dose and regimen of chemotherapy was often difficult to determine because some patient records were unavailable or were unclear as to what treatment was given. Another area is better communication between healthcare providers and patients.
"Quality cancer care depends on the careful interaction of many healthcare providers working with the patient to battle the disease - a true partnership," said Rebecca Garcia, Ph.D, vice president of health sciences for the Susan G. Komen Breast Cancer Foundation, a funder of the NICCQ study. "Based on the NICCQ study results, the Komen Foundation is recommending four simple tips, empowering patients to take an active role in the partnership with their healthcare providers to achieve the best possible care."
Tips from the Komen Foundation
The Komen Foundation's tips for patients include:
- Keep your medical records - But don't just keep a copy. Work with your healthcare providers to fully understand what the information in the records means to you and your care.
- Talk to your doctor and understand your treatment options - Don't hesitate to ask questions about all treatment options, side effects, and necessary follow up.
- Know what you can expect from the treatments chosen - You don't have to suffer alone or wait for an appointment to call your doctor or nurse. He or she will work with you to make sure all symptoms and side effects are managed effectively.
- Consider the need for additional doctors and specialists - It may take more than one healthcare provider or specialist to make up your cancer care team. Don't be afraid to ask your primary doctor for referrals.
The need for further research
In addition, ASCO noted that although the NICCQ study represents a significant step to fully measure the quality of care for people with cancer, further research is needed to provide a more complete picture of care for patients.
"We need to expand the NICCQ measures to include additional types of cancer, as well as a broader patient population. Further research needs to focus on patients with advanced disease, patients in rural areas, and other populations, including racial and ethnic minorities, non-English speakers, children, and the elderly," Dr. Johnson said.
Areas for follow-up
According to the NICCQ findings, follow-up efforts to improve the quality of breast and colorectal cancer care should target the following areas:
- Optimizing chemotherapy dosing
- Managing side effects associated with treatment
- Advising patients about all treatment options, especially when patient choice is a key factor in the decision making process (e.g., type of surgery, breast reconstruction, etc.)
- Improving documentation of key information regarding patients' cancer and treatment, specifically stage and details of chemotherapy planning and delivery
- Ensuring that patients at the highest risk of poor outcomes receive recommended care
The Harvard and RAND research teams plan to publish the full results of the study in a series of articles to run in national medical journals starting this summer.
ASCO is the world's leading professional organization representing physicians of all oncology subspecialties who care for people with cancer. ASCO's more than 20,000 members from the United States and abroad set the standard for patient care worldwide and lead the fight for more effective cancer treatments, increased funding for clinical and translational research, and, ultimately, cures for the many different types of cancer that strike an estimated 10 million people worldwide each year. ASCO publishes the Journal of Clinical Oncology (JCO), the preeminent, peer-reviewed, medical journal on clinical cancer research, and produces People Living With Cancer (www.PLWC.org), an award-winning website providing oncologist-vetted cancer information to help patients and families make informed health-care decisions.