Current Projects in Health Disparities
The National Health Interview Survey (NHIS) is a
nationwide survey of about 36,000 households in the United States and a principal source
of information on the health of the civilian noninstitutionalized population. The survey
is conducted annually by the National Center for Health
Statistics. In selected years (most recently in 2000), NCI funds the Cancer Control
Supplement (CCS), supplementing NHIS with questions on cancer risk factors and cancer
screening. The wide range of covariates included in the NHIS-CCM makes it a rich source
of data for examining differences in the prevalence of lifestyle factors associated with
cancer and the receipt of cancer screening by age, gender, race/ethnicity, and
socioeconomic status, and by factors influencing health system access such as insurance
status, usual source of care, and employment.
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California Health Interview Survey
The California Health Interview Survey (CHIS) is designed
to provide detailed information on the physical and mental health status of California
adults and children. Specifically, it looks at prevalence and management of chronic
diseases, diet and exercise patterns, and use of cancer screening services. NCI funded a
Cancer Control Module in 2001. CHIS has taken advantage of California's rich racial,
ethnic, and linguistic diversity by fielding the survey in six languages. It is a
valuable source of information on racial/ethnic groups not well covered by other surveys,
including Asian-Americans, Pacific-Islanders, and American Indians.
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Complementary and Alternative Medicine Survey in California
The use of complementary and alternative medicine (CAM) has skyrocketed among the US
population in recent years. Still, the use of CAM is poorly understood, and its impact on
general health care cannot be extrapolated from previous studies because the available
data are mainly from small, racially homogeneous populations. NCI is particularly
interested in CAM use among individuals who have previously been diagnosed with cancer, as
well as the use of CAM for cancer prevention in the general population. This study,
called CHIS-CAM, will collect extensive information on CAM in
the prevention and/or treatment of cancer and other chronic illnesses and will link the
information with data that have already been collected from California Health Interview Survey respondents. The size and
diversity of the racial/ethnic groups in this sample of California residents will help NCI
ascertain the use of CAM among racial/ethnic minority populations.
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Behavior Coding Research
The Behavior Coding Research project uses the 2003 California
Health Interview Survey (CHIS) to develop a means for assessing the cross-cultural
equivalence of survey questions. This project uses a questionnaire evaluation technique
called behavior coding, which involves assigning codes to survey questions that appear to
present difficulties to either the interviewer (indicated by misreading the item) or the
respondent (indicated by asking for clarification or providing uncertain answers). ARP
staff will extend the use of this technique to the multi-cultural domain by behavior
coding CHIS interviews across three language groups (English, Spanish, and either Chinese
or Korean). ARP staff and collaborators also will determine which survey questions appear
to present problems in particular languages, indicating where the translated version
should be reviewed and modified. The project will provide valuable information concerning
the means by which behavior coding can be used in other surveys that are conducted in
multiple languages.
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SEER-Medicare
The SEER-Medicare database
reflects the linkage of two large population-based sources of data that provide detailed
information about persons aged 65 and older with cancer. The Surveillance, Epidemiology and End Results (SEER)
program of cancer registries collect clinical, demographic, and cause of death
information for persons with cancer. These data are linked to their Medicare claims for
covered health care services from the time they are eligible for Medicare until death.
SEER-Medicare data have been used to identify substantial differences in receipt of cancer
treatment and follow-up care by SEER registry location, age, and racial-ethnic status.
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Cancer Care Outcomes Research and Surveillance Consortium
The Cancer Care Outcomes Research
and Surveillance Consortium (CanCORS) project is a prospective study of 10,000
patients with newly diagnosed lung or colorectal cancers. CanCORS is designed to examine
a range of disparities in the receipt of state-of-the-science cancer care and factors that
contribute to disparities in outcomes, and to identify ways to lessen those disparities.
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Patterns of Care/Quality of Care Studies
Patterns of Care/Quality of
Care (POC/QOC) studies describe treatment for various cancer sites and compare them
with the guidelines for care as reflected by NIH Consensus Development Conferences
Statements and NIH Clinical Alerts. Investigators use additional data abstracted on SEER
cases to conduct these studies. These additional data allow investigators to examine
patterns of cancer care in more detail than routinely-collected data allow. Ethnic
minority populations are often oversampled in POC/QOC studies to make it possible to
compare patterns of care across racial-ethnic groups.
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Experience of Care and Health Outcomes of Survivors of non-Hodgkin's Lymphoma
Study
As part of the Rapid Response
Surveillance Study mechanism, staff are collaborating with the Los Angeles County
Cancer Surveillance Program on the Experience of Care and Health
Outcomes of Survivors of non-Hodgkin's Lymphoma (ECHOS-NHL) Study, a population-based
study that examines the experience of follow-up care and health outcomes of survivors of
aggressive non-Hodgkin's Lymphoma, diagnosed between 1 and 5 years before the study. Data
will be analyzed to explore differences in quality of life as well as experience of
long-term and late effects of cancer treatment by age, gender, and race/ethnicity. This
study will also explore differences in patient self-reports of follow-up care by age,
gender, and race/ethnicity.
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Assessment of Patients' Experience of Cancer Care Study
As part of the Rapid Response
Surveillance Study mechanism, staff are collaborating with the Northern California Cancer Center to conduct a
population-based, pilot evaluation of a questionnaire that will assess cancer survivors'
experience of cancer care, called the Assessment of Patients' Experience of
Cancer Care (APECC). The questionnaire will be modeled on the Consumer Assessment of Health Plans
(CAHPS) survey developed by the Agency for Healthcare Research and Quality. In
addition to patients' cancer care experiences, data will be collected on their information
needs and information-seeking experiences and their preference for participation in
medical decisions related to their cancer. The sample will consist of bladder cancer,
colorectal cancer, and leukemia survivors diagnosed between 1 and 3 years before the
study. Differences by age, gender, and race/ethnicity in patients' experience of cancer
care, their information needs and information-seeking experience, as well their
decision-making preferences will be examined.
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NCI-HRSA-CDC Cancer Collaborative
In collaboration with the Health Resources and Services
Administration (HRSA) and the Centers for Disease Control
and Prevention, the NCI is working on a health disparities collaborative focused on
improving screening and follow-up for breast, colorectal, and cervical cancers in
HRSA-supported community health centers. Based on a model of collaborative learning,
participating health centers are making breakthrough changes across key areas of their
practice that will result in improved cancer screening and follow-up for the underserved
populations for which they provide care.
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Prostate Cancer Outcomes Study
The Prostate Cancer Outcomes Study
(PCOS) examines practice patterns and the impact of treatments for prostate cancer on
the quality of life of men living with the disease. Initiated in 1994, PCOS includes
collaborators from six of NCI's SEER cancer registries. The PCOS sample consists of
approximately 3,400 men with newly diagnosed prostate cancer, including approximately 500
African-American and 500 Hispanic men. The data collected by PCOS facilitate the
investigation of population-wide variations in stage at diagnosis, treatments used, and
quality-of-life outcomes most pertinent to men with prostate cancer.
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Tobacco Use Supplement to the Current Population Survey
The Tobacco Use Supplement to
the Current Population Survey (TUS-CPS) is a key source of data on smoking and other
tobacco use. It is unique in its ability to provide both national- and state-level
estimates because of its extremely large sample size (about 240,000 people). When it was
found that the type of cigarettes smoked differs by age, gender, and race/ethnicity,
questions were added to the 2003 TUS-CPS to obtain more narrowly defined estimates of the
use of mentholated, light, and ultra-light cigarettes. The 2003 TUS-CPS was translated
into Spanish by a multicultural team including a Census Bureau Field Representative and a
translator. The translated survey was cognitively tested and pre-tested in the field.
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Pregnancy Hormones Study
A number of studies have revealed disparities in breast cancer incidence, tumor
characteristics, and mortality for Hispanics, African-Americans, and Caucasians. A new ARP
study will bring this health disparities focus to an emerging area of breast cancer
research: early life exposures. Some recent studies have begun to examine whether
characteristics of a pregnancy can influence future breast cancer risk in the offspring.
In this study, investigators evaluated estrogens, androgens, and sex hormone binding
globulin (SHBG) differences across ethnic groups who vary in their risk of breast cancer.
The study population consists of Hispanic, Caucasian and African-American women in the
Boston metropolitan area. Levels of androstenedione, testosterone, estrone and prolactin
were significantly lower in maternal serum of Caucasian compared with Hispanic women.
Although not statistically significant, concentrations of estradiol were lower in
Caucasian compared with Hispanic or African-American women. Concentrations of androgens
and progesterone were notably higher in African-American compared with either Caucasian or
Hispanic women. These data are consistent with hypotheses that the in utero hormonal
environment may explain some of the ethnic differences in cancer risk.
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Health, Eating, Activity, and Lifestyle Study
The Health, Eating, Activity, and Lifestyle (HEAL) study,
begun in 1996, is designed to explore the associations among physical activity, eating
habits, weight patterns, diet, hormones, and prognostic factors for breast cancer. NCI is
particularly interested in the interplay of these lifestyle factors because women who are
overweight or obese have a poorer survival and increased breast cancer recurrence rate
compared with lighter-weight women. Overweight, obesity, and adult weight gain also are
risk factors for postmenopausal breast cancer. Study participants with early stage breast
cancer were recruited through three SEER registries: the Fred Hutchinson Cancer Research
Center in Seattle, Washington; the University
of New Mexico; and the University
of Southern California. Because each of
these registries draws from a distinct racial and ethnic population mix, study
investigators will have a unique opportunity to examine the differences in these
associations among various racial and ethnic groups.
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Improvements to Surveillance Instruments
ARP has been actively engaged in upgrading its surveillance instruments to better
measure lifestyle factors among US subpopulations. For example, the Diet History Questionnaire (DHQ) has been
translated into Spanish.
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Eliminating Tobacco-related Health Disparities
Eliminating
Tobacco-related Health Disparities (PDF) is the first report to identify critical
steps to help reduce tobacco use and its consequences among understudied and historically
underserved populations in the United States. This report describes the process employed
to generate research recommendations in key scientific areas, summarizes the conference
presentations, and presents nine research themes used to categorize over 100
recommendations developed by conference participants. This report represents efforts that
began at the National Conference on Tobacco and Health Disparities held in December 2002
in Palm Harbor, Florida. Hard copies will be available at a later date.
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