|
Improve the quality of cancer care by strengthening the scientific basis for public and private decision making in care delivery, coverage, purchasing, regulation, and standards setting.
Receiving the best possible medical treatment and care is the continuing hope for over 9 million cancer patients and survivors in the United States. Drawing from the Institute of Medicine's (IOM) National Cancer Policy Board (NCPB) report, we define quality cancer care as:
- 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.
The ultimate aim is to improve a range of outcomes important to patients, families, and other decision makers, including patient survival and health-related quality of life.
Unfortunately, far too many will not receive the highest caliber of care. In many cases, there is substantial disagreement about what constitutes optimal care, especially from the patient's perspective, and about the best approaches for achieving improvement. Even where consensus appears to exist, there is often wide variation in practice patterns. Therefore, it is critical that we advance understanding of how to measure, monitor, and improve the quality of cancer care.
The reasons why some cancer patients do not receive the newer, more effective treatments or sufficient palliative and end-of-life care are not adequately understood. The NCPB has criticized the Nation's "ad hoc and fragmented cancer care system." Cancer patients, families, and providers gave testimony, summarized in the President's Cancer Panel Report, Voices of a Broken System: Real People, Real Problems, which identified barriers to high quality cancer care, including:
- System and financial limitations
- Inadequate patient information and provider education
- Poor management of cancer-related symptoms
- Lack of timely referral to palliative and hospice care
NCI must strive to discover what constitutes quality cancer care. We must develop the measures and tools required to achieve improvements and evaluate performance. Finally, we must investigate and generate mechanisms, in collaboration with public and private policymakers, to ensure that quality care - based on outcomes research that identifies best practices - is delivered to all who need it.
top of page
Discovery
Development
Delivery
Discovery
Discovering What Constitutes Quality Cancer Care
Several NCI-supported national data resources enable researchers to empirically explore important questions related to cancer quality of care. Rapid Response Special Studies (RRSS) allow NCI to quickly sponsor research on high-priority topics:
- A recent RRSS study found that in children with cancer, 71 percent of patients younger than 15 received treatment through NCI-sponsored clinical trial protocols, but less than 24 percent of adolescents ages 15-19 received this highest quality pediatric cancer treatment.
- Two new RRSS studies, the Experience of Care and Health Outcomes of Survivors of Non-Hodgkin's Lymphoma (ECHOS-NHL) and the Assessment of Patients' Experience of Cancer Care (APECC), will yield important new information about the follow-up care experiences and health outcomes of cancer survivorss.
NCI's Patterns of Care/Quality of Care (POC/QOC) program draws from the Surveillance, Epidemiology, and End Results (SEER) registry data to investigate adoption of recommended treatments for the most common cancers. The results of POC/QOC studies are reported at professional meetings of oncology societies and are used to develop educational and training opportunities to improve the use of state-of-the-art cancer therapy in community practice. Currently, POC/QOC data are being analyzed to document the relationship between health insurance coverage and receipt of appropriate or complete cancer care. Recently published POC/QOC studies reported the following findings:
- Breast and colorectal cancer patients are now more likely to be offered appropriate therapy (i.e., adjuvant chemo- and hormonal therapy for breast cancer) following NIH consensus statements recommending treatments and earlier clinical trials indicating their effectiveness.
- Not all patients who might benefit from these treatments are receiving them (i.e., cases where treatment decisions are more complex; for older patients where the issue of comorbid disease may complicate treatment decisions).
- There are racial variations in the receipt of treatment for colorectal as well as several other types of cancer.
Studies linking SEER and Medicare data continue to provide insights into quality-of-care issues. For example:
- Hospice is used more frequently and for a longer period by persons enrolled in health maintenance organizations (HMOs), compared with fee-for-service patients.
- Patients diagnosed with superficial bladder cancer undergo significantly less post-diagnostic surveillance than generally recommended by leading cancer professional and research organizations.
- Disabled women with breast cancer are diagnosed at a later stage of the disease than non-disabled women, with the disparity greater for women with fee-for-service coverage compared with HMO coverage.
To better understand the causal factors and mechanisms that underlie the patterns of care described in these investigations, NCI has established large national-level studies that track patterns of care and outcomes for cohorts of newly diagnosed cancer patients. The first of these, the Prostate Cancer Outcomes Study (PCOS), provided a wealth of information about treatment outcomes for 3,500 men diagnosed with tumors confined to the prostate gland. Recent PCOS results include reported quality-of-life outcomes and patient satisfaction with care 2 years following treatment. PCOS results have been incorporated into several informational resources to aid informed decisions about screening and treatment for prostate cancer.
In 2001, NCI launched the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS), combining data from registries, medical records, insurance claims, and patient and provider surveys to create an unusually rich longitudinal picture of the care received by a sample of 5,300 colorectal patients and 4,800 lung cancer patients across the United States. Treatment settings include fee-for-service, large nonprofit HMOs, and the relatively centralized health care system of the Department of Veterans Affairs.
The Breast Cancer Surveillance Consortium (BCSC) investigates factors associated with high quality screening mammography in community practice. Findings include the following:
- Evidence from a study involving over 300,000 women, including 2,200 women with cancer, examined the combined and individual effects of breast density, age, and hormone replacement therapy on the accuracy of screening mammography. This prospective study showed that both breast density and age are important independent predictors of mammographic accuracy and that hormone replacement therapy affects accuracy only through its effect on breast density.
- Research examining the biologic characteristics of cancers that are not detected by screening has found that screening mammography may miss some rapidly growing, high-grade tumors and those of lobular or mucinous histology.
The BCSC is actively collaborating with Federal regulatory agencies, radiological professional societies, and private-sector vendors to reduce the cost and improve the quality of data collection for mammography quality control.
The Cancer Research Network, a consortium of researchers affiliated with 11 major not-for-profit HMOs, is providing the mechanism for NCI to quickly obtain better data on patterns of cancer care from multiple perspectives. Recent findings include:
- Current smokers (82 percent) felt that patients should be asked about tobacco use "often" or "at every visit." Smokers receiving advice to quit reported greater satisfaction with their health plan. However, support for tobacco cessation in clinical practice is both variable and suboptimal.
- Nonprofit HMO oncologists have highly favorable attitudes toward clinical trials. The most important factor predicting oncologists' ability to recruit patients was having sufficient organizational infrastructure to support trial participation, such as support from clinical trial nurses and briefings by department chairs.
- Researchers developed a comprehensive framework for analyzing the process of care in breast and cervical cancer screening. The study reported that the majority of late-stage breast and invasive cervical cancer cases appear to be associated with an absence of screening or failures in detection. This suggests two very different interventions: promoting patient screening and improving detection.
A follow-up study will take advantage of HMO electronic medical records to increase patient access to smoking cessation services.
These diverse projects are significantly expanding our understanding of how to measure and improve the quality of cancer care in a variety of specific, community-based practice settings. Yet, we need additional research on health system-level interventions. The organizational and informatics infrastructure of clinical and patient decision making requires improvement, and patient care will benefit from incentives rewarding the delivery of evidence-based cancer care.
Promoting Discovery about Quality of Care through the NCI Clinical Trials Program
The NCI National Clinical Trials Program provides an ideal venue to deepen our understanding about the quality of cancer care from both biomedical and patient-reported perspectives by incorporating clinical and health-related quality-of-life endpoints into clinical study design. A workshop on the diffusion of medical innovations will be held in 2004, setting the stage for studies to examine why some highly promising therapies successfully move into clinical practice while others do not.
Development
Developing Core Measures to Support Discovery and Delivery of Quality Cancer Care
In 2001, NCI convened the Cancer Outcomes Measurement Working Group (COMWG), composed of 35 internationally recognized experts in measurement, oncology, and the social sciences. This group assessed alternative approaches for improving patient-centered outcome measures such as health-related quality of life, economic burden, and satisfaction with care. The lack of standardization in measuring such patient-reported outcomes is a major barrier to comparing findings in quality-of-care research. Furthermore, the outcome measures selected for a given study must be sufficiently sensitive (just like a good diagnostic test) to detect clinically important differences among interventions. As a result, COMWG members have recommended that investigators select outcome measures from the small set that has been adequately validated.
In the forthcoming volume Outcomes Assessment in Cancer (Cambridge University Press, 2004), the working group emphasizes the potential value of survey item banks and computer-adaptive data collection. Such approaches have the potential to transform the often contentious problem of selecting the "b est" among competing instruments to the more focused inquiry of selecting the set of questions (from the item bank) that is most appropriate for each respondent.
NCI is collaborating with other Federal agencies and the private sector to create standards for process measures of cancer care quality. The centerpiece of this Cancer Care Quality Measures Project (CanQual), conducted under the auspices of the nonprofit National Quality Forum (NQF), is consensus development of core process measures and recommendation of topics for further measures development. The high-priority areas identified by NQF are:
- Diagnosis and treatment for breast, colorectal, and prostate cancers.
- Access to care, and communication and coordination of care.
- Symptom management across the cancer continuum, including end of life.
Developing Approaches to Improve Symptom Management and Palliative Care across the Cancer Continuum
The Improving Palliative Care for Cancer report identified gaps in symptom management and palliative care research. Information on how to better measure, evaluate, and improve symptom management is now emerging from a variety of NCI initiatives, including:
- COMWG, CanQual, and CanCORS collaborative studies.
- The 2002 NIH State-of-the-Science Conference on "Symptom Management in Cancer: Pain, Depression, and Fatigue."
- Clinical trials on supportive and palliative care.
- New research that examines depression in cancer patients through the NCI Community Clinical Oncology Program.
- NCI- and NIH-supported studies on complementary and alternative medicine at the end-of-life.
Delivery
Delivering on the Promise of High Quality Cancer Care through Evidence-Based Decision Making
Since it was established in 2000, NCI's Quality of Cancer Care Committee (QCCC) has sought to improve Federal-level decision making on cancer care. Through the QCCC, NCI is currently supporting three interagency projects:
- The Health Resources and Services Administration, the Centers for Disease Control and Prevention, and the nonprofit Institute for Health Care Improvement are collaborating with NCI to improve screening and follow-up for breast, cervical, and colorectal cancers in community health centers for the medically underserved. In the project's pilot phase, 12 health centers helped develop and test a core set of quality performance measures, which are now being evaluated in 20 additional centers.
- The Centers for Medicare and Medicaid Services is working with NCI to increase the awareness and improve the delivery of Medicare-covered colorectal cancer screening services.
- The Department of Veterans Affairs (VA), with NCI support, has established a Quality Enhancement Research Initiative (QUERI) to improve screening, follow-up, treatment, and end-of-life care for colorectal cancer in the VA health system.
top of page
Discovery
Development
Delivery
Discovery
| 1. | Strengthen the methodological and empirical foundations of cancer care quality assessment. | $17.50 M |
- Sustain support for existing data collection and analysis mechanisms, including the Cancer Care Outcomes Research and Surveillance Consortium (CCORSC), the Cancer Research Network (CRN), the Cancer Intervention Surveillance Modeling Network (CISNET), the Patterns of Care/Quality of Care (POC/QOC) program, Rapid Response Special Studies (RRSS), and Surveillance, Epidemiology, and End Results (SEER)-Medicare.
- Investigate factors associated with high-quality screening mammography in community practice, including women's characteristics, such as the effect of hormone replacement therapy and breast density; and physician and facility characteristics, such as volume, experience, and examination technique, by renewing support for the Breast Cancer Surveillance Consortium (BCSC). $6.00 M
- Support intervention studies and programs for improving referral patterns and treatment where suboptimal performance has been documented, such as in cervical and ovarian cancers. $2.00 M
- Investigate the feasibility of implementing new data systems to monitor the outcomes and economic cost of cancer care in health care systems, including:
- Linkage of tumor registry information with additional public and private health claims data and with patient outcomes and satisfaction surveys. $5.00 M
- Establishment of physician networks and databases for tracking and monitoring cancer screening practices. $1.50 M
- Creation of a provider survey initiative to collect nationally representative data from practitioners and health care organizations, including information on evidence-based interventions in systems of care. $1.00 M
- Conduct new studies to strengthen the methodological foundations of outcomes research and quality-of-care assessment, including research on how to measure and link structure, process, and outcome variables in a variety of patient care settings. $2.00 M
|
| 2. | Enhance quality-of-care research within and beyond the NCI clinical trials program. | $2.00 M |
- Conduct an international state-of-the-science conference to examine the benefits of adding health-related quality of life and other patient-reported outcome measures to cancer trials, in collaboration with the Food and Drug Administration and a range of community-based practitioners. Based on findings, recommend new guidelines for the use of such endpoints in NCI-supported treatment and prevention trials. $0.50 M
- Examine the rates and patterns of adoption of important therapies across the entire spectrum of delivery systems, using knowledge gleaned from a workshop on the diffusion of medical innovations. $1.00 M
- Support economic studies paralleling cancer treatment and prevention trials, and other cancer control intervention studies. $0.50 M
- Strengthen the evaluation of proposals to use health-related quality of life and economic endpoints in NCI-sponsored Phase III trials, by establishing protocol review teams consisting of both NCI and non-NCI experts who apply agreed-upon criteria in a consistent fashion.
|
Development
| 3. | Identify, develop, and test core process and outcome measures for assessing the quality of cancer care. | $6.50 M |
- Improve patient-centered outcomes measurement, including health-related quality of life and patient satisfaction, by (1) developing and testing tools and instruments, such as item banks and computer adaptive testing, to enhance data collection; (2) supporting statistical studies to facilitate the "cross-walking" of scores among competing instruments, and determining clinically meaningful change scores; and (3) conducting pilot investigations of new or enhanced outcome measures, e.g., for cancer survivors. $2.00 M
- Identify and test additional core process measures by providing supplemental funding for the Cancer Care Quality Measures Project (CanQual). $2.00 M
- Test the ability of core process and outcome measures to improve the quality and patient safety of cancer care over time, in diverse populations; strengthen provider accountability; and enhance informed decision making by patients, families, and persons at risk for cancer, through projects conducted with public and private partners. $2.50 M
|
| 4. | Incorporate symptom management and palliative care into the full spectrum of cancer quality improvement research and translation efforts, from initial treatment, through survivorship, and at the end of life. | $3.00 M |
- Assess innovative approaches to achieve effective symptom management and palliative care by collaborating with other NIH institutes to support research on new interventions (e.g., for lymphedema, cachexia, pain, and sleep disorders) across the cancer continuum. $2.50 M
- Assist in the coordination of Department of Health and Human Services activities in end-of-life research through the creation of a symptom management and palliative care consortium for research studies within NCI Cooperative Groups, and cosponsor an NIH End of Life interest group.
- Increase the number of interdisciplinary-trained researchers in symptom management, rehabilitation, and palliative care through individual mentor and career development awards. $ 0.50 M
|
Delivery
| 5. | Ensure that the best available scientific evidence about quality measures and assessment informs Federal, state, and private-sector decision making about cancer care. Sponsor collaborative projects to identify, develop, and monitor progress on core measures of cancer care quality and translate research evidence into better quality care. | $6.50 M |
- Provide technical assistance and advice to public agencies and private organizations, upon request, through continued support for the Quality of Cancer Care Committee (QCCC) projects and the collective clinical and policy expertise of the QCCC. $2.00 M
- Implement core process measures of cancer quality, and monitor progress over time, both nationally and regionally, through collaboration with public agencies and private organizations. Such measures would span the cancer continuum and also include symptom management and palliative care. $1.00 M
- Incorporate evidence-based symptom management and palliative care practices more fully into NCI's education and information products, and broadly disseminate through the Internet and education programs for health professionals. $0.50 M
- Support ongoing development of a national cancer data system for tracking trends in cancer care and outcomes, and identifying population disparities, through collaboration among QCCC members (including the Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, and the Agency for Healthcare Research and Quality), the states, and private organizations.
- Create, support, and evaluate programs to strengthen the science of cancer care by:
- Implementing and evaluating evidence-based interventions to improve cancer care within and across facilities, through collaborative teams of top leadership and front-line clinicians within NCI-designated Cancer Centers and other organizations. $1.50 M
- Addressing the delivery of cancer care at the health systems level, including approaches to improve cancer care coordination and patient navigation, and provider decision support, by issuing joint solicitations with other NIH institutes and Federal agencies. $1.50 M
|
| Management and Support | $0.80 M |
| Total | $36.30 M |
top of page
Each time my colon cancer comes back, it seems to hit me harder. The pain is worse, I have more trouble sleeping, and I just get so tired. The pain is the biggest problem. I get depressed because I can't control it. When the doctors and nurses ask me how the pain is, I don't know how to describe it, except that it's worse than it was the week before. I'm afraid to say too much, because they might stop the chemo, and then the cancer would get even worse.
My husband has been battling cancer for a year and a half. I know he's in a great deal of pain because I can see it in his face. The doctor gave him pain medication, but I wonder if he's taking the full dose - he's told me before he doesn't like how "out of it" he feels when he takes it. It seems like it's a never ending cycle - as the pain gets worse, he gets more tired, he can't eat or sleep, which makes the pain even harder to take. I wish I knew what to do to help him be more comfortable. |
Symptoms of cancer and side effects of related treatments can be severe in patients with advanced-stage disease, especially in those receiving aggressive and experimental therapies. We know that:
- Symptoms affect patients' overall quality of life, including their ability to do many of the things most people take for granted such as caring for themselves, doing household chores, sleeping, or going to work.
- Intense and uncontrolled symptoms lead to poor emotional and physical health.
- Patients are sometimes hesitant to report they have bothersome symptoms for fear their therapy will be slowed or stopped.
More symptom management research is needed to ensure that patients receive quality, effective cancer care that does not disrupt their quality of life. NCI-supported investigators are currently:
- Determining which symptoms occur most frequently according to tumor type and treatment choice
- Developing new methods for assessing symptoms
- Working to improve communication about symptoms between patients and their health care teams
- Developing and comparing strategies of symptom management
- Finding ways to better integrate symptom management as a vital part of all cancer care
NCI-supported researchers are exploring ways to help patients and their families better manage symptoms and improve their quality of life. For example:
- Investigators are seeking a better understanding of the interaction between common symptoms of advanced cancer. For example, when patients experience pain, are they more likely to have fatigue? And which symptoms are particularly troubling to caregivers and patients?
- Other NCI-supported researchers are investigating which symptom management techniques are helpful for various groups of caregivers -- for example, older versus younger or male versus female caregivers.
Millions of Americans are providing care for a family member with cancer. These caregivers are partners in care, part of the patient's team, and a vital resource to the patient. They are often responsible for accessing information, communicating with the patient's healthcare team, and providing hands-on care to alleviate troublesome symptoms.
For many caregivers, managing patient symptoms is one of the toughest challenges. Caregivers are more likely to feel a greater sense of burden and to be depressed, frustrated, and overwhelmed in their role when patients' symptoms are out of control, particularly when the patient has severe pain or fatigue. Through symptom management research, we will be able to better prepare caregivers to manage patients at home and ultimately improve caregivers' emotional and physical health as they continue to help their family members live with cancer.
This People's Story is an amalgam of individual experiences
top of page
|