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Quality of Cancer Care

The Challenge
Progress Toward Meeting the Challenge
2003 Plan and Budget Increase Request



Enhance the state of the science for defining, measuring, monitoring, and improving the quality of cancer care, and inform both public- and private- sector decision making on cancer care delivery, coverage, regulation, and standards setting.


The Challenge

About nine million Americans living today have had a diagnosis of cancer, and another 1.3 million will be diagnosed in 2001. Of these, a large percentage are undergoing active treatment for their disease, and all require life-long quality care to detect and treat recurrences, new cancers, treatment side effects, and to meet their supportive care needs.

In 2001, direct medical care costs attributable to cancer will exceed $50 billion. The toll in human pain, suffering, and fear cannot be captured in dollars, but will be keenly felt by the millions of people touched by cancer.

The quality of cancer care is a major national concern. Evidence suggests that some patients with cancer do not receive the newer, more effective treatments. Moreover, in some cases, there remains substantial disagreement or uncertainty about what constitutes optimal care, especially from the patient's perspective.

This was underscored by reports from the Institute of Medicine's National Cancer Policy Board - Ensuring the Quality of Cancer Care and Improving Palliative Care for Cancer - and by the President's Cancer Panel meetings held across the country to explore why not all Americans get the best available cancer care. Clearly, too many patients face significant financial and other barriers to obtaining appropriate and timely care.

But even as society wrestles with how to make health care more accessible to more people, it is critically important to advance a comprehensive research agenda that includes finding ways to improve the quality of the cancer care, as well as deepening our understanding of factors that impede access.

To meet this research challenge, we must:

  • Define a core set of cancer outcome measures to enhance our ability to compare interventions across studies and over time. Chosen measures must be patient-centered, acceptable to providers and payers, span the continuum of care from prevention to treatment and post-treatment care, including palliative care, and meet the highest technical standards.

  • Define a core set of process measures to identify those interventions that have been convincingly shown to improve cancer care outcomes. Process measures are focused on how care is delivered in comparison with accepted standards.

  • Build a stronger data and methods "infrastructure" for conducting quality of care analyses, including studies to determine which interventions improve patient-valued outcomes, identify geographic or racial/ethnic variations in receipt of quality care, and monitor quality over time, both at the individual and population levels.

  • Ensure that therapies shown to be effective in clinical trials are incorporated into community practice.

  • Enhance the quality of cancer communications by gaining a better understanding of the information needs of patients, families, and other decision makers involved in the choice of cancer interventions.

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Progress Toward Meeting the Challenge

The following are examples of some specific research activities underway related to key elements of NCI's quality of care research plan.

Developing Core Measurements for Assessing Quality of Cancer Care
Strengthening the Science Base for Cancer Care Assessment
Enhancing Quality of Care Research within the NCI Clinical Trials Program
Improving the Quality of Cancer Care by Strengthening Cancer Communications
Ensuring the Best Available Scientific Evidence To Inform Decision Making


Developing Core Measurements for Assessing Quality of Cancer Care

Core Outcome Measures

Identifying clinical and patient-centered endpoint measures that are valid, reliable, sensitive, and feasible for use in quality of care studies is critical if these studies are to appropriately inform decision makers. In response, NCI has convened the Cancer Outcomes Measurement Working Group - 35 internationally recognized experts in measurement, oncology, and the social sciences - to assess the strengths and limitations of alternative approaches to measuring health-related quality of life, economic burden, and satisfaction with care for the major cancer sites and for every phase of cancer care, and to make recommendations about core measures for use across studies.

A set of papers reviewing and analyzing the published literature in cancer outcomes research over the past decade will be published as a monograph of the Journal of the National Cancer Institute in early 2002. This monograph will critically appraise the current and potential use of cancer outcomes measures across a broad array of applications - from national level surveillance , to the evaluation of prevention and treatment interventions in trials to observational studies, to monitoring the progress of individual patients undergoing cancer treatment.

The Monograph focuses not only on the most prevalent adult cancers, but also the special challenges in measuring and monitoring the outcomes of care for childhood cancer patients and survivors.

Core Process Measures

For some elements of cancer care, there is such strong evidence linking provider and health services performance to better outcomes that providing such care is presumed to enhance quality. Identifying a body of core process measures of cancer care quality is an important element for ongoing and future research to monitor the performance of providers and health systems.

To move this effort forward, NCI is working closely with the National Quality Forum (NQF), created recently to foster voluntary consensus standards on the quality of health care, focusing on treatment, survivorship, and palliative care. NCI has actively collaborated with a number of Federal agencies and private-sector organizations to assist the NQF in shaping the objectives, agenda, framework, and timeline, as well as to provide financial and technical assistance.

Strengthening the Science Base for Cancer Care Assessment

NCI's Surveillance, Epidemiology, and End Results (SEER) program, a well known and highly respected surveillance system, continues to provide a wealth of information to the private and public research enterprise on the cancer burden, as well as data resources for assessing the impact of research advances on cancer outcomes.

SEER Pattern of Care Studies are ongoing investigations to monitor the diffusion of cutting-edge interventions into community practice, with special attention to population disparities in the receipt of cancer care. Benchmark studies from 1987 to 1995 on patterns of care for patients with breast and colorectal cancer will be published in 2001.

The Prostate Cancer Outcome Studies (PCOS), initiated in 1994, have extended our ability to understand treatment patterns by collecting information directly from patients and their physicians, as well as data from medical records, for more than 3,500 men diagnosed with prostate cancer and followed for up to 5 years. For men diagnosed with prostate cancer, the treatment choice is frequently difficult, often involving a joint consideration of the patient's age, the presence of comorbidities, and an estimate of how fast the tumor is growing. Current treatment options include watchful waiting, surgery, radiation therapy, or hormone therapy, all of which hold some risk and benefit to the patient.

Results from a PCOS study looking at health outcomes after radical prostatectomy or radiotherapy for clinically localized prostate cancer show that rates of impotence are high among men receiving radical prostatectomy (79 percent) and radiation (62 percent). Among the men ages 55 to 59 years, the prostatectomy patients were more bothered by loss of sexual function than were the radiotherapy patients. Also, men in the radical prostatectomy group recovered some urinary and sexual function during the second year after treatment, while men in the radiotherapy group remained the same or slightly worse.

Findings like these from PCOS will contribute to more informed treatment decisions for men diagnosed with prostate cancer. These results include detailed descriptions of treatment effectiveness, side effects, and the resulting impact on health-related quality of life.

PCOS results also are providing information on racial and ethnic differences in advanced- stage prostate cancer. One recently published report shows that African American and Hispanic men are more likely to be diagnosed with advanced stage prostate cancer than white men. For Hispanics, but not for African Americans, much of this difference is explained by differences in demographic, socioeconomic, clinical and health insurance patterns. These results suggest that more targeted research is needed to identify the specific life-style , attitudinal, and health systems factors, as well as biological susceptibility factors that may explain these higher rates of advanced stage prostate cancer in these groups.

The approach of using large cohorts of newly diagnosed cancer patients to study treatment patterns and monitor the quality of care, has been extended to the study of colorectal and lung cancers. At research institutions across the country, NCI is providing support for research teams to conduct these studies under the sponsorship of the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium. CanCORS will:

  • Support the development and application of an expanded set of core process and outcome measures.
  • Examine methodological issues in outcomes research conducted in community settings.

The potential value of such large cohort studies for quality assessment is being increasingly recognized within the oncology community. For example, the American Society of Clinical Oncology has launched such a study, focusing on breast and colorectal cancer, as part of its National Initiative on Cancer Care Quality.

Studies linking SEER and Medicare data are also extremely useful to the research community and other stakeholders assessing the quality of cancer care. A study looking at age and adjuvant chemotherapy use following surgery for colon cancer reports that more than 70 percent of colon cancer patients age 65-74 initiated postoperative chemotherapy during the period 1991-1996. However, rates of use declined markedly for older patients, even after adjusting for measures of comorbidity. Also, African American patients were found to be less likely to receive chemotherapy than Whites, even among patients with no major comorbidities. Further investigation is necessary to determine whether patient preferences, physician attitudes, or other factors in the health care system explain the care patterns.

In an effort to develop analogous information and data on patients under 65 years of age, NCI has been working with managed care systems to promote collaborative cancer research. Through the Cancer Research Network (CRN) initiative, a consortium of researchers affiliated with 10 major not-for-profit HMOs is conducting studies of late-stage breast and invasive cervical cancer cases to identify patient, provider, and system factors that affect advanced disease.

Enhancing Quality of Care Research within the NCI Clinical Trials Program

The NCI clinical trials program provides an ideal venue to assess quality of care by incorporating valid, reliable, quality-of-life endpoints into clinical study design. NCI staff are working with clinical trials investigators around the country to assist them in decisions about the appropriate inclusion of quality-of-life endpoints in NCI-sponsored trials.

Improving the Quality of Cancer Care by Strengthening Cancer Communications

Ultimately, improved cancer care depends on our ability to translate 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 efforts already underway focus directly on the quality of cancer care.

Ensuring the Best Available Scientific Evidence on Quality Measures and Assessment To Inform Federal Decision Making on Cancer Care

In 1999, the Department of Health and Human Services created the Quality of Cancer Care Committee (QCCC) a trans-agency task force with representatives from Federal agencies involved in cancer care delivery, coverage, regulation, and research. The QCCC, chaired by NCI, was created on the principle that Federal-level decisions about cancer care should be consistent with the best scientific evidence available on quality outcomes. NCI is working directly with:

  • The Department of Veterans Affairs, on the Quality Enhancement Research Initiative Center, to promote the use of evidence to foster better patient outcomes and promote ongoing system wide improvements in detection and treatment of colorectal cancer.

  • The Centers for Medicare and Medicaid Services, on a project to improve the quality of cancer care by increasing colorectal cancer screening rates within the Medicare beneficiary population and their primary care physicians in North and South Carolina.

  • The Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention, on a project to improve cancer screening, referral, and follow-up in Federally supported primary care health clinics. One objective of this project is to reduce health disparities for the underserved population cared for by HRSA-supported community health centers throughout the. United States.

  • The Food and Drug Administration, in an effort to determine the benefit of selected endpoints, including clinically oriented and patient-reported outcomes, to help judge drug efficacy and health marketing claims. The aim is to understand the value added - in terms of information important to patients and other decision makers - from using measures of health-related quality of life in addition to, or instead of, symptom-based indicators of patient status and improved survival.

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The Plan - Quality of Cancer Care

Enhance the state of the science for defining, measuring, monitoring, and improving the quality of cancer care, and inform both public- and private- sector decision making on cancer care delivery, coverage, regulation, and standards setting.

Fiscal Year 2003 Objectives, Milestones, and Funding Increases Needed

1. Develop core measures for assessing the quality of cancer care.$2.5 M
2. Strengthen the methodological and empirical foundations of quality of cancer care assessment. $8.0 M
3. Enhance quality of care research within the NCI clinical trials program.$1.0 M
4. Improve quality of care by strengthening the quality of cancer communications. (Budgeted in Cancer Communication Opportunity)
5. Ensure that the best evidence informs Federal decision making.$2.0 M
Management and Support $0.5 M
Total $14.0 M

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Objective 1: Develop core process and outcome measures for assessing the quality of cancer care.
  • Support research to improve the theory and practice of patient-centered outcomes measurement in cancer, including the development and testing of new instruments, item banking, and computer adaptive testing to improve the efficiency and accuracy of data collection as well as statistical studies to facilitate the "cross-walking" of scores between competing instruments.
$1.5 M
  • Continue to participate in and provide supplemental funding for the National Quality Forum in order to identify core process measures of cancer care quality.
$1.0 M

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Objective 2: Strengthen the methodological and empirical foundations of quality of cancer care assessment.
  • Sustain support at $7.5million per year for Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) studies of dissemination of state-of-the-science therapies and palliative care into community practice, the influence of modifiable risk factors, and disparities in the delivery of quality cancer care.
  • Sustain support for Cancer Research Network population laboratories for cancer control research, with additional emphasis on studies of the quality of cancer care in community settings. (Budgeted in Emerging Trends, objective 2.)
$1.25 M
  • Sustain support for Surveillance Epidemiology and End Result program (SEER) pattern of care studies to produce regular and timely information on levels, trends, variations, and dissemination of treatments of proven efficacy and effectiveness. Integrate results from these studies with Cancer Intervention Surveillance Modeling Network (CISNET) models to predict effects of treatment dissemination on population trends in cancer survival and mortality. (Budgeted in Studying Emerging Trends.)
  • Increase support for analyses of the SEER-Medicare database to investigate the diffusion and outcomes of selected cancer interventions.
$2.0 M
  • Support the creation of databases that link tumor registry information with private payer administrative data to expand capacity to investigate whether cancer interventions are reaching and improving the health of individuals under age 65.
$2.0 M
  • Continue support for innovative research on economic and health care delivery system determinants of quality of cancer prevention, screening, and treatment services at the community level.
$2.5 M
  • Sponsor new studies to strengthen the methodological foundations of outcomes research and quality- of- care assessment.
$1.5 M

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Objective 3: Enhance quality of care research within the NCI clinical trials program.
  • Sponsor a symposium and follow-up workshop to bring together leading researchers, patient advocates, and the relevant Federal agencies to assess the current state of the art, identify key research questions, and develop a decision strategy for encouraging comprehensive assessment of patient outcomes for clinical trials.
$0.5 M
  • Using knowledge gleaned from a workshop on the determinants of diffusion of medical innovations, expand support for studies of diffusion patterns and the overall diffusion rates of important clinical trial findings into community practice.
$0.5 M

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Objective 4: Improve the quality of cancer care by strengthening the quality of cancer communications. (Budgeted in Cancer Communication Opportunity.)
  • Gather and analyze nationally representative data to assess the current status of cancer communications and their use in cancer care decision making.
  • Within the Centers of Excellence in Cancer Communications Research, support projects to improve patients' understanding of the risks, benefits, and costs of curative therapies and palliative interventions.
  • Create new communications products and tools to improve the accuracy, clarity and timeliness of cancer care decision making.
  • To accelerate the adoption of important patient interventions, convene an interdisciplinary group of scholars, organization gatekeepers, and funders to identify research strategies and opportunities for collaboration.

Objective 5: Ensure that the best available scientific evidence about quality measures and assessment informs Federal decision making on cancer care. Share new knowledge with public and private partners on ways to translate quality-of-care research into better medical practice. Collaborate with these partners to identify core measures of cancer care quality.
  • Continue to support interagency demonstration projects organized through the Quality of Cancer Care Committee, a forum for coordinating Federal activities to improve the quality of cancer care.
  • Capitalize on the collective clinical and policy expertise of the QCCC to provide technical assistance and advice to public agencies and private organizations upon request.
$1.25 M
TOTAL$2.00 M

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