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2007 National Healthcare Quality & Disparities Reports

Data Sources—Miscellaneous and Multiple-source Data Sponsors

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California Health Interview Survey (CHIS)

Sponsor

UCLA Center for Health Policy Research, California Department of Public Health, California Department of Health Care Services (DHCS), in association with a consortium of philanthropic, commercial, and government health care organizations.

Study Design

The CHIS is a population-based random-digit dial (RDD) telephone survey of California's population conducted in alternate years. CHIS employs a multistage sample design with geographic sampling strata; within each geographic stratum, residential telephone numbers were selected through RDD sampling. One adult (age 18 and over), one adolescent (age 12-17), and one child (under age 12) respondent are randomly selected within each household, where available. Adults and adolescent are interviewed directly; the adult most knowledgeable about the child's health responds on behalf of the child.

Mode of Administration

CHIS is based at the UCLA Center for Health Policy Research and is conducted in collaboration with the California Department of Health Services and the Public Health Institute. A private firm specializing in sample surveys conducts the data collection under contract.

Primary Survey Content

Information is obtained on demographic characteristics, health conditions, health behaviors, insurance coverage and health plan enrollment, household poverty level and public program eligibility and participation, and other topics. Additional topics of interest are included in specific surveys.

Population Targeted

Adult, adolescent, and child residential population of California.

Demographic Data

Age, sex, race/ethnicity, educational level.

Schedule

Every other year since 2001.

Contact Information

Agency home page: http://www.healthpolicy.ucla.edu/Exit Disclaimer, http://www.cdph.ca.gov/Pages/default.aspxExit Disclaimer, http://www.dhcs.ca.gov/Pages/default.aspx.Exit Disclaimer

Data system home page: http://www.chis.ucla.edu/.Exit Disclaimer

References

California Health Interview Survey. CHIS 2005 Methodology Series: Report 1 - Sample Design. Los Angeles, CA: UCLA Center for Health Policy Research, 2007.

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Family Evaluation of Hospice Care Survey

Sponsors

National Hospice and Palliative Care Organization (NHPCO).

Study Design

The Family Evaluation of Hospice Care Survey is administered by participating hospices and palliative care organizations to family members of hospice patients after end of life.

Mode of Administration

Participation is voluntary. Data are collected via either a self-administered paper questionnaire or a scripted telephone questionnaire. The survey may be initiated by the hospice organization or by a third-party data vendor. Respondents are generally contacted from 1 to 3 months after a patient's death and are asked to take part in the survey. Data are submitted to NHPCO for consolidation.

Population Targeted

People receiving hospice services.

Demographic Data

Age, sex, race/ethnicity, educational level.

Schedule

Ongoing.

Contact Information

Agency home page: http://www.nhpco.org.Exit Disclaimer

References

Connor SR, Teno J, Spence C, et al. Family Evaluation of Hospice Care: Results from Voluntary Submission of Data Via Website. Journal of Pain and Symptom Management 2005;30(1):9-17.

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HIV Research Network (HIVRN)

Sponsors

U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality (AHRQ); Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB); Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Treatment (SAMHSA/CSAT); and Office of AIDS Research, National Institutes of Health (OAR/NIH).

Study Design

The HIVRN comprises 18 data collection sites. Each site is a provider of HIV care and treatment to a substantial number of patients with HIV infection. Primary data collection occurs through abstraction of information in the patients' medical records. Data, without any identifying information, are sent to the data coordinating center at Johns Hopkins Medical Institutions.

Data abstracted from records include number and length of inpatient admissions, number of outpatient visits to the HIVRN site, sex, age, race/ethnicity, HIV transmission risk group, insurance status, lowest CD4 count, and highest viral load.

Population Targeted

Data from the HIVRN are not nationally representative.

Years Collected

Since 2000.

Schedule

Annual abstraction of medical records.

Geographic Estimates

Although the data collection sites are located in every region of the country, regional projections cannot be made from HIVRN data.

Contact Information

Agency home page: http://www.ahrq.gov.

Data query page: http://archive.ahrq.gov/data/HIVnet.htm.

References

HIV Resource Utilization Data Coordinating Center (DCC) Project. HIVnet. Rockville, MD: Agency for Healthcare Research and Quality, February 2003. Available at http://archive.ahrq.gov/data/HIVnet.htm.

HIV Research Network. Hospital and Outpatient Health Services Utilization Among HIV-Infected Patients in Care in 1999. Journal of Acquired Immune Deficiency Syndromes 2002;30(1):21-26.

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Hospital CAHPS (HCAHPS)

Sponsor

U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services (CMS), in partnership with the Agency for Healthcare Research and Quality (AHRQ).

Mode of Administration

The HCAHPS survey, also known as the CAHPS Hospital Survey, is a national, standardized survey instrument and data collection methodology for measuring patients' perspectives on hospital care.

Participation by hospitals in HCAHPS is voluntary. HCAHPS is designed as a core set of questions that complement the hospital-specific data items that hospitals may currently collect as part of their own patient satisfaction programs. There are four modes of administration approved for the survey: mail only, telephone only, mail followed by telephone, and interactive voice response (IVR).

Primary Survey Content

The HCAHPS survey is composed of 27 items: 18 essential items that encompass fundamental aspects of the hospital experience (communication with medical staff, responsiveness of hospital staff, cleanliness and quietness of the hospital, pain control, communication about medicines, and discharge information); 4 screening items; and 5 demographic items.

Population Targeted

Live discharged hospital patients who were 18 or older at admission, had an inpatient overnight stay, and had a nonpsychiatric diagnosis.

Demographic Data

Race, ethnicity, education.

Years Collected

Beginning fall 2006. The first public reporting of HCAHPS results will occur in March 2008.

Schedule

Annual.

Contact Information

Agency home pages: http://www.cms.hhs.gov/;
http://www.ahrq.gov/.

Data system home page: http://www.hcahpsonline.org/.

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National Assessment of Adult Literacy (NAAL)

Sponsors

U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics.

Description

The 2003 NAAL is the first large-scale national assessment in the United States to contain a component designed specifically to measure health literacy—the ability to use literacy skills to read and understand written health-related information encountered in everyday life. The NAAL health literacy component will establish a baseline against which to measure progress in health literacy in future assessments.

The health literacy measure used in the 2007 NHDR is based on data from the NAAL health literacy report, which provides firsthand information on the status of the health literacy of American adults age 16 and older. Results are reported in terms of the four literacy performance levels—Below Basic, Basic, Intermediate, and Proficient—with examples of the types of health literacy tasks that adults at each level may be able to perform.

Mode of Administration

Data collection was conducted in 2003 using in-person household interviews. Interviewers used a computer-assisted personal interviewing (CAPI) system. Person-level data were collected through a screener, a background questionnaire, the literacy assessment, and an oral module.

Each respondent was first administered a 35-minute background questionnaire. Following the background questionnaire, respondents were asked to complete a set of seven core literacy tasks. On the basis of their responses to those tasks, they were administered either the main NAAL assessment or an alternative assessment. After completing either assessment, respondents were administered an oral-reading fluency assessment.

Each respondent to the NAAL received a booklet that included 3 of 13 assessment blocks. The main NAAL assessment measured literacy on three scales: prose, document, and quantitative. Because each respondent did not answer all the NAAL items, item response theory (IRT) methods were used to estimate average scores on the health, prose, document, and quantitative literacy scales.

In addition to the prose, document, and quantitative literacy scales, the 2003 assessment included a health literacy scale. The health literacy scale included prose, document, and quantitative items with health-related content. The tasks fell into three areas: clinical, prevention, and navigation of the health system.

Survey Sample Design

The 2003 NAAL household sample included a nationally representative probability sample of households. The household sample was selected on the basis of a four-stage, stratified area sample: (1) primary sampling units (PSUs) consisting of counties or groups of contiguous counties; (2) secondary sampling units consisting of area blocks; (3) housing units containing households; and (4) eligible people within households. More than 18,000 adults were selected from a sample of more than 35,000 households that represented the entire U.S. household population age 16 and over. Black and Hispanic households were oversampled at the national level to ensure reliable estimates of their literacy proficiencies.

Primary Survey Content

The survey consists of demographic information, a respondent self-reported assessment of literacy, and a series of standardized literacy scores.

Population Targeted

U.S. residents age 16 and over.

Demographic Data

Age, sex, race, ethnicity, income, education.

Years Collected

2003. A comparable study, the National Adult Literacy Survey, was conducted in 1992. By comparing results from 1992 and 2003, NAAL provides the first indicator in a decade of the Nation's progress in adult literacy. NAAL also provides information on adults' literacy performance and related background characteristics to researchers, practitioners, policymakers, and the general public.

Schedule

Once.

Geographic Estimates

National; four U.S. Census Bureau regions; State-level estimates are available for six States that sponsored additional data collection.

Contact Information

Agency home page: http://nces.ed.gov/.

Data system home page: http://nces.ed.gov/naal/.

References

Greenberg E, Jin Y. 2003 National Assessment of Adult Literacy: Public-Use Data File User's Guide Washington, DC: National Center for Education Statistics, 2007.Pub. No. NCES 2007-464.

Kutner M., Greenberg E., Jin Y, et al. The Health Literacy of America's Adults: Results From the 2003 National Assessment of Adult Literacy Washington, DC: National Center for Education Statistics, 2006. Pub. No. NCES 2006-483.

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National Sample Survey of Registered Nurses (NSSRN)

Sponsors

U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Evaluation and Analysis Branch in association with the Bureau of Health Professions.

Mode of Administration

The survey was administered by mailings and followed by telephone interviews for those who did not respond to the mailing; a Web-based survey was also available. A private survey firm under contract with HRSA conducted the sample selection, data collection, and processing.

Survey Sample Design

A frame of sampling segments was randomly selected from a registry of nurses with an active license in the United States submitted by each State and the District of Columbia. States with small populations were oversampled. The sample is weighted to represent the population of registered nurses in the United States.

Primary Survey Content

The survey examines the supply, composition, and distribution of nurses on the national and State level to ensure an adequate supply of qualified nursing personnel against requirements. The survey collects information about certification, work setting and status, and demographic profile.

Population Targeted

All registered nurses with an active license in the United States.

Demographic Data

Sex, education, race, income, ethnicity.

Years Collected

Since 1980.

Schedule

Every 4 years.

Geographic Estimates

National, States.

Contact Information

Agency home page: http://www.hrsa.gov/.

Data system home page: http://bhpr.hrsa.gov/healthworkforce/.

References

U.S. Department of Health and Human Services, Health Resources and Services Administration. The Registered Nurse Population: Findings from the 2004 National Sample Survey of Registered Nurses. Appendix B: Survey Methodology. Available at http://bhpr.hrsa.gov/healthworkforce/rnsurvey04/appendixb.htm.

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National Cancer Data Base (NCDB)

Sponsors

American College of Surgeons and American Cancer Society.

Mode of Administration

Data abstracted from medical charts and other records by cancer registrars in participating hospitals.

Survey Sample Design

All hospitals with Commission on Cancer (CoC)-approved cancer programs are required to submit data for all patients diagnosed or treated for a cancer diagnosis on an annual basis. More than 1,400 participating hospitals respond to a call for data submitting case reports for a specified calendar year approximately 9 months after the calendar year. The NCDB includes information on approximately 75 percent of newly diagnosed cancer patients in the United States. Sociodemographic characteristics of the NCDB population are similar to those of the corresponding overall U.S. population.

Primary Survey Content

The NCDB contains standardized data elements on patient demographics, patient insurance status, tumor site, stage and morphology, comorbidities, and first course of treatment. In addition, the NCDB contains information on patient ZIP Code and county of residence, which is used to incorporate area-based sociodemographic characteristics. Selected characteristics of the reporting health care facility are also collected.

Population Targeted

Patients treated at hospitals with CoC-approved cancer programs in the United States, all ages.

Demographic Data

Sex, age at cancer diagnosis, and race/ethnicity.

Years Collected

Continuously since 1985. Data elements collected and format of these elements have changed over time.

Schedule

Annual.

Geographic Estimates

National; nine U.S. Census Bureau regions; metropolitan and nonmetropolitan areas.

Contact Information

NCDB home page: http://www.facs.org/cancer/ncdb/.Exit Disclaimer

NCDB overview: http://www.facs.org/cancer/coc/ncdboverview.html.Exit Disclaimer

References

Stewart AK, Bland KI, McGinnis LS, et al. Clinical highlights from the National Cancer Data Base. CA: A Cancer Journal for Clinicians 2000;50:171-183.

Sylvester J, Blankenship C, Carter A, et al. Quality Control: The American College of Surgeons Commission on Cancer Standards, National Cancer Data Base, and Cancer Liaison Program. Journal of Registry Management 2000;27:68-74.

Wingo PA, Luke E, O'Brian K, et al. Population-Based Patterns of Care Studies: Collaboration Among State Cancer Registries, The American College of Surgeons, and The American Cancer Society. Journal of Registry Management 2001;28:3-16.

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University of Michigan Kidney Epidemiology and Cost Center (UM-KECC)

Sponsor

University of Michigan with funding from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services (CMS).

Description

UM-KECC is dedicated to the study of the cause, treatment, and prevention of kidney disease.

Mode of Administration

The UM-KECC end stage renal disease (ESRD) database consists of information from the CMS ESRD Program Management and Medical Information System, the Annual Facility Survey, and Medicare dialysis and hospital payment records derived from Medicare claims supplemented by data from the Social Security Administration; these CMS-supplied data are comprehensive for Medicare patients. For non-Medicare patients, the database contains limited data from a variety of sources, including data from the CMS Medical Evidence Form, the Organ Procurement and Transplant Network, the Death Notification Form, and the Social Security Death Master File.

Primary Content

Data on patients receiving ESRD services, services rendered to ESRD patients, status, and outcomes. Data for Medicare patients are comprehensive.

Data include transplant status, wait list status, hospital admissions, hematocrit levels, urea reduction ratio ranges, dialytic modalities, limited laboratory values, death, primary cause of ESRD, height, weight, place of service, and employment status.

Population Targeted

All Medicare patients receiving ESRD services and some non-Medicare patients receiving these services.

Demographic Data

Age, sex, race, ethnicity, State of residence.

Years Collected

1999 to present. The entry for the U.S. Renal Data System (USRDS) has information on prior years (1993-1999).

Schedule

Ongoing.

Geographic Estimates

National and State level.

Contact Information

Agency home page: http://www.med.umich.edu.Exit Disclaimer

Data system home page: http://www.sph.umich.edu/kecc/.Exit Disclaimer

References

University of Michigan Kidney Epidemiology and Cost Center. Guide to the 2003 Dialysis Facility Reports: Overview, Methodology, and Interpretation. Ann Arbor, MI: University of Michigan Kidney Epidemiology and Cost Center, August 2003.

University of Michigan Kidney Epidemiology and Cost Center. Guide to the 2004 Dialysis Facility Reports: Overview, Methodology, and Interpretation. Ann Arbor, MI: University of Michigan Kidney Epidemiology and Cost Center, August 2004.

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