Addressing Areas of Public Health Emphasis |
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Improving the Quality of Cancer Care
The ChallengeThe nine million Americans living today who have had cancer, including the 1.3 million who will be diagnosed in 2002 and the 500,000 who are in the last year of life, all hope that they receive the best medical treatment and care possible. Unfortunately, far too many will not receive this caliber of care. The Institute of Medicine's National Cancer Policy Board (NCPB) recently reported that the "ad hoc and fragmented cancer care system" in the United States "does not ensure access to care, lacks coordination, and is inefficient in its use of resources." The report emphasizes problems of underuse, overuse, and misuse of existing interventions that have also been underscored by the President's Cancer Panel. Testimony by cancer patients, families, and providers summarized in the Panel's 2001 report, Voices of a Broken System: Real People, Real Problems, points to a number of barriers to high-quality cancer care. These include system and financial limitations, the inadequacy of patient information and provider education, poor management of cancer-related symptoms, and lack of timely referral to palliative and hospice care. Drawing from the NCPB report, we define quality cancer care to mean the provision of evidence-based, patient-centered services throughout the continuum of care in a timely and technically competent manner, with good communication, shared decision making, and cultural sensitivity, with the aim of improving clinical outcomes, including patient survival and health-related quality of life. The reasons why some patients with cancer do not receive the newer, more effective treatments or adequate palliative and end-of-life care are poorly understood. Substantial disagreement exists about what constitutes optimal care, especially from the patient's perspective. Therefore, it is critical that we advance understanding of how to measure, monitor, and improve the quality of cancer care. To meet this research challenge, we must:
Progress Toward Meeting the ChallengeDeveloping Core MeasurementsStrengthening the Science Base Improving Symptom Management and Palliative Care across the Cancer Continuum Enhancing Quality of Care Research within the NCI Clinical Trials Program Strengthening Cancer Communications Ensuring That the Best Available Science Informs Decision Making Developing Core MeasurementsIn 2001, NCI convened the Cancer Outcomes Measurement Working Group, composed of 35 internationally recognized experts in measurement, oncology, and the social sciences, to assess alternative approaches to improve validity, reliability, feasibility, and comparability of patient centered outcome measures such as quality of life, economic burden, and satisfaction with care. In its forthcoming book, Outcomes Assessment in Cancer (Cambridge University Press), members of this working group advance a number of compelling recommendations. A major barrier to comparing findings across studies and assessing progress over time is the lack of standardization in measuring outcomes like health-related quality of life. In response, working group members recommend that outcome measures should be selected from the small set that have been adequately validated. In addition, NCI should support "cross-walk" analyses that facilitate the transformation of scores on competing instruments and "item banks" populated by items from multiple high-quality instruments. These elements would enhance our ability to compare study findings and conduct sound meta analyses and user-friendly computer adaptive survey administration. A monograph analyzing recent literature in cancer outcomes research will be published in 2003. The volume will highlight and illustrate a wide range of applications of cancer outcome measures, including national-level surveillance, the evaluation of prevention and treatment interventions in trials and observation studies, and methodology for monitoring the progress of adults and children (and their families) undergoing cancer therapy or receiving palliative care. Standards for process measures of quality cancer care are being developed through a major new NCI collaboration with other Federal agencies and the private sector. The Cancer Care Quality Measurement Project (CanQual), conducted under the auspices of the non-profit National Quality Forum, is identifying core process measures for treatment, survivorship, and end-of-life care for the major tumor sites, as well as measures that apply to all tumor sites, such as palliative care. CanQual exemplifies partnerships that can accelerate the adoption of evidence-based process measures by a broad range of decision makers. CanQual and the core outcome measures working group are linked conceptually; they concur that a candidate process measure would be regarded as quality-enhancing when there is convincing evidence it improves outcomes that are important to decision makers. Moreover, for some interventions (e.g., palliative care), demonstrated improvement in patient-centered outcome measures constitutes direct evidence of good quality care. Strengthening the Science BaseNCI established the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) in 2001, launching a single study of treatment patterns and quality of care over time in large cohorts of newly identified cancer patients. CanCORS investigators are combining data from registries, medical records, insurance claims, and patient and provider surveys to assess the care received by a population-based sample of 5,000 colorectal and 5,000 lung cancer patients across the United States. This research will investigate the impact of selected interventions on patient-centered outcomes, dissemination of state-of-the-art therapies in the community, modifiable risk factors, and disparities in cancer care and outcomes by racial/ethnic group and socioeconomic status. Recognizing the potential value of large cohort studies, the American Society of Clinical Oncology (ASCO) is conducting a similar study, focusing on breast and colorectal cancer, as part of its National Initiative on Cancer Care Quality. NCI and ASCO have signed a Memorandum of Understanding (MOU) that stresses sharing information and progress on complementary efforts to improve the quality of care. The forerunner to CanCORS is the landmark Prostate Cancer Outcomes Study (PCOS), the first longitudinal study of quality of life for men living with prostate cancer. NCI's recently established Patterns of Care/Quality of Care Program (POC/QOC) is drawing from the Surveillance, Epidemiology, and End Results (SEER) registry data to investigate adoption of recommended treatments for the most common cancers. Recently published POC/QOC studies provide the most authoritative data on trends in treatment patterns for breast, colorectal, and ovarian cancer and results will be disseminated through professional education activities in collaboration with professional societies. In addition, SEER Rapid Response Special Studies (RRSS) make it possible to support methodological and pilot investigations targeted to NCI quality-of-care research priorities. For example, two new RRSS studies focus on evaluating non-Hodgkins lymphoma patients for satisfaction with quality of care. Studies linking SEER and Medicare data continue to provide insight into quality-of-care issues including:
The Cancer Research Network (CRN), a consortium of researchers affiliated with 10 major not-for-profit HMOs, has provided the mechanism for NCI to obtain better data more quickly on patterns of cancer care from multiple perspectives. Currently, the CRN is conducting three major projects designed to improve the organization and delivery of tobacco cessation services in the context of primary care delivery, evaluate and improve processes of care associated with the optimal delivery of cervical and breast cancer screening procedures, and evaluate the effectiveness of prophylactic mastectomy and early screening for women at elevated risk for breast cancer. Additional CRN projects focus on identifying organizational barriers to clinical trial participation in the HMO settings, investigating the utility of HMO administrative records for conducting cancer-related health services research, and examining long-term quality-of-life issues following breast cancer treatment. The work of the Breast Cancer Surveillance Consortium investigates factors associated with the performance of high-quality screening mammography in community practice, including the roles of hormone replacement therapy and breast density, family history, age, and examination technique. Improving Symptom Management and Palliative Care across the Cancer ContinuumThe Improving Palliative Care for Cancer report from the Institute of Medicine's National Cancer Policy Board identified gaps in symptom management and palliative care (end-of-life) research, and also highlighted the under recognition, under diagnosis, and under treatment of cancer patients with significant distress. Information on how to better measure, evaluate, and improve palliative care is now emerging from a variety of initiatives:
Enhancing Quality of Care Research within the NCI Clinical Trials ProgramThe NCI National Clinical Trials Program provides an ideal venue to assess quality of care through the incorporation of valid and reliable health-related quality-of-life endpoints into clinical study design. A workshop on the diffusion of medical innovations will be held in 2003, setting the stage for studies to examine why some highly promising therapies successfully move into clinical practice while others do not. Strengthening Cancer CommunicationsUltimately, improved cancer care depends on our ability to communicate messages about prevention, treatment, patient care, survivorship, and end-of-life issues to the research community, providers, patients, and payers. As part of NCI's investment in Cancer Communications as an Extraordinary Opportunity, several current efforts focus directly on the quality of cancer care. See Cancer Communications. Ensuring That the Best Available Science Informs Decision MakingNCI established the Quality of Cancer Care Committee (QCCC) in 2000 to improve the quality of Federal-level decision making about cancer care. Its membership includes the Federal agencies involved in cancer care delivery, coverage, regulation, standards setting, or conducting research on the quality of cancer care. The Plan - Quality of Cancer Care
Goal Objectives, Milestones, and Funding Increases Required for Fiscal Year 2004
Prostate Cancer Outcomes Study Sheds Light on Treatment ChoicesThe Prostate Cancer Outcomes Study (PCOS), the most comprehensive survey ever undertaken on prostate cancer outcomes, was initiated in 1994 to evaluate variations in practice and the impact of therapies on health-related quality of life. Study findings are helping men, their families, and clinicians make more informed choices about treatment alternatives. They include:
NCI plans to follow the 3,500 PCOS participants for 10 years after diagnosis to ascertain and verify deaths, maintain contact with respondents, and conduct a survey ten years out to assess long-term changes in disease-related quality of life. NCI Collaborates with Federal Partners to Ensure That the Best Available Evidence Informs Decision MakingThrough the Quality of Cancer Care Committee, NCI currently supports three interagency projects:
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