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Understanding the Factors that Influence Cancer Outcomes
NCI is dedicated to improving cancer-related outcomes and reducing the impact and burden of cancer on patients,
their families, and society. The Institute seeks to identify, measure, and understand factors that influence the
quality and effectiveness of cancer-related programs and care both in the United States and abroad. These factors
may be biological, behavioral, sociocultural, environmental, or economic in nature. Cancer-related outcomes
can be measured in terms of: intervention efficacy; survival; health-related quality of life; satisfaction with care;
performance of the health care system; and the economic burden on individuals, families, or society at large.
For clinicians and patients, cancer outcomes research can provide evidence about the benefits, risks, and results of
interventions, which can then be used to make more informed decisions. For health care managers and purchasers,
cancer outcomes research can identify potentially effective strategies that can be implemented to improve the
quality and value of cancer-related care.
The following are examples of NCI research with international partners into possible factors that can influence
cancer-related outcomes. Of special note is the NCI's involvement with the International Breast Cancer Screening
Network (IBSN), which is described below.
It is difficult to directly assess the impact of cancer-related interventions on a population
level. Mathematical modeling, however, may be an appropriate method for performing
such assessments. Researchers at the Erasmus University Medical Center, Department of
Public Health (Rotterdam, The Netherlands) have developed a microsimulation model,
called MISCAN-COLON, to evaluate the population benefit and expenditures for interventions
to reduce the burden of colorectal cancer.
Using MISCAN-COLON, a large number of individual life histories can be simulated in
each of which several colorectal lesions can emerge. Screening for colorectal cancer can
then be simulated, which will alter some of the life histories. Multiple factors can be
specified in the MISCAN-COLON model, including: demographic, epidemiologic, and
economic information; the characteristics of screening; and other information, such as
risk factors, treatment practice, and behavioral aspects. Various assumptions about the
natural history of colorectal cancer and screening and about surveillance strategies can
also be incorporated in the model. MISCAN-COLON produces a detailed output of
colorectal cancer incidence, prevalence, and mortality, as well as the results and effects
of screening. It can be used to test hypotheses against empirical data. The model can also
be used for evaluating screening policies and for choosing between competing policies
by comparing their simulated costs and effectiveness outcomes.
The Erasmus University Department of Public Health and NCI are working with
researchers in Europe, Canada, and the United States to conduct additional validation
studies of MISCAN-COLON and to use the model for program and policy evaluation.
In 2004, MISCAN-COLON was used to evaluate the colorectal cancer screening
coverage policy of the U.S. Center for Medicare and Medicaid Services.
Erasmus University is also a partner in an NCI-funded Cancer Intervention and
Surveillance Modeling Network (CISNET) grant on colorectal cancer, and MISCANCOLON
was used in the CISNET evaluation of the U.S. Department of Health and
Human Services' Healthy People 2010 goals.
The CIBMTR is a research program funded by a grant from NCI that collects detailed
data on blood and bone marrow transplant patients from more than 450 transplant
centers in 48 countries. Formed in 2004, the center helps researchers share patient data
and conduct scientific studies on transplant treatments for cancer. The CIBMTR collects
data on about 65 percent of the allogeneic hematopoietic cell transplants (HCTs) done in
North and South America, about 35 percent of the allogeneic transplants done elsewhere,
and about 60 percent of autologous HCTs done in North and South America. The center's
database contains information on more than 100,000 blood and marrow transplants.
The ability to perform retrospective analyses on worldwide transplant data has led to a
number of important conclusions regarding transplant patient outcomes, including the
following:
Chronic graft-versus-host disease (and its treatment) increases the risk of developing
squamous cell carcinoma of the skin and of mucosal surfaces, and bone marrow
transplant patients should be screened for this complication.
Human leukocyte antigen (HLA)-mismatched umbilical cord blood should be considered
as a source of transplantable hematopoietic cells for patients who do not have an
HLA-matched adult donor.
Ethnicity affects the risk of developing acute graft-versus-host disease, but not overall
survival after transplantation.
Although peripheral blood stem cell transplants appear to be at least as successful as
marrow transplants in adults, this is not the case in children. Children who received
peripheral blood transplants showed higher rates of chronic graft-versus-host disease
and treatment-related mortality, as well as lower survival.
Treating rectal adenocarcinoma tumors preoperatively with chemoradiotherapy (i.e.,
chemotherapy combined with radiation therapy), results in a wide spectrum of responses
ranging from complete responsiveness to complete resistance. NCI has collaborated with
researchers at University Hospital and Medical School of the University of Göttingen,
Germany in a study to investigate whether parallel gene expression profiling of the
primary tumor can help stratify patients into groups of likely responders and likely
non-responders. The results of the study suggest that pretherapeutic gene expression
profiling may be helpful in predicting the response of rectal adenocarcinomas to
preoperative chemoradiotherapy.
NCI and the Drug Information Association (DIA) cosponsored a conference in 2004
that focused on innovative techniques for patient-reported outcomes assessment based on
item-response-theory modeling and computerized adaptive testing. The conference goal
was to improve the quality and feasibility of measuring patient-reported outcomes, with
an emphasis on cancer. DIA is a nonprofit organization with 27,000 individual members
from 75 countries. Its membership is drawn from the pharmaceutical industry, academia,
government, and contract research organizations.
At the meeting, NCI and DIA member scientists outlined a research agenda for the future
of health outcomes and behavioral science measurement, including use of computerized
adaptive testing for measuring key health domains, such as physical functioning, emotional
well-being, fatigue, and pain.
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NCI is a leading member of IBSN, a voluntary consortium involving 25 countries that have active,
population-based screening mammography programs. IBSN encourages collaborative research
to identify and foster efficient and effective approaches to breast cancer control worldwide
through population-based screening mammography.
To better understand the nature of the screening programs in its member countries, IBSN has
undertaken two comprehensive assessments of member country programs in which screening
policies, funding, guidelines, and program organization were examined. IBSN also has undertaken
several quality assurance program assessments to determine the scope of quality assurance
activities for population-based screening mammography across member countries.
Three priority areas are being addressed by IBSN: 1) evaluation of screening program impact on
mortality, late-stage disease, and other surrogate measures; 2) assessment of screening program
performance parameters; and 3) evaluation of women's communication and decision-making
needs related to mammography screening.
The results from collaborative IBSN projects are published in peer-reviewed journals1,2,3 and
disseminated to all consortium members as resources for improving mammography screening
in their countries.
Additional information on the program can be found at http://appliedresearch.cancer.gov/ibsn/.
1 Yankaskas B, Klabunde C, Ancelle-Park R, Renner G, Wang H, Fracheboud J, Pou G, Bulliard J. International Breast Cancer
Screening Network. International comparison of performance measures for screening mammography: can it be done? Journal of
Medical Screening, 2004;11(4):187-193.
2 Klabunde C, Sancho-Garnier H, Taplin S, Thoresen S, Ohuchi N, Ballard-Barbash R. International Breast Cancer Screening Network.
Quality assurance in follow-up and initial treatment for screening mammography programs in 22 countries. International Journal for
Quality in Health Care, December 2002;14(6):449-461.
3 Hendrick R, Klabunde C, Grivegnee A, Pou G, Ballard-Barbash R. Technical quality control practices in mammography screening
programs in 22 countries. International Journal for Quality in Health Care, June 2002;14(3):219-226.
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