Data Sources—Miscellaneous and Multiple-Source Data Sponsors

Sponsors

National Institutes of Health (NIH), National Institute of Mental Health (NIMH).

Description

The CPES join together three nationally representative surveys: the National Comorbidity Survey Replication (NCS-R), the National Survey of American Life (NSAL), and the National Latino and Asian American Study (NLAAS). Together, these surveys allow national estimates of mental disorders and mental health care for both minority and majority populations in the United States with sufficient statistical power to examine cultural influences on mental health.

Survey Sample Design

Data collection for each survey was based on a four-stage national area probability sample conducted in 252 geographic area-based primary sampling units across the United States. Fifty areas shared by all three surveys were selected with certainty; areas unique to NSAL or NLAAS were introduced to reflect the particular racial and ethnic focus of those surveys. The CPES component of all three surveys uses a modified version of the World Health Organization's (WHO) expanded version of the Composite International Diagnostic Interview developed for the World Mental Health Survey initiative. This standardized psychiatric diagnostic interview was developed for administration by lay interviewers.

Mode of Administration

Interviewers used a computer-assisted personal interviewing system for all three surveys.

Primary Survey Content

Information is collected about the prevalence of mental disorders and any associated disorders and their treatment patterns within majority and minority adult populations in the United States. The CPES also contain data about language use, ethnic disparities, support systems, discrimination, and assimilation, in order to examine potential relationships between various mental health disorders and social and cultural issues.

Population Targeted

A consolidation of the populations represented in the three component surveys: English-speaking adults age 18 and over residing in households in the continental United States (NCS-R); black Americans of African or Caribbean descent and white Americans age 18 and over residing in households in the continental United States (NSAL); Hispanic, Asian, and non-Hispanic, non-Asian white American adults age 18 and over residing in households in the continental United States and Hawaii (NLAAS).

Demographic Data

Age, gender, race/ethnicity.

Years Collected

2001-2003.

Contact Information

Agency home page: http://www.nimh.nih.gov/.

Data system home page: http://www.icpsr.umich.edu/CPES/index.html.

References

Alegria M, Jackson JS, Kessler RC, et al. Collaborative Psychiatric Epidemiology Surveys (CPES), 2001-2003 (United States) (Computer file). ICPSR20240-v5. Ann Arbor, MI: Institute for Social Research, Survey Research Center (producer); 2007. Ann Arbor, MI: Inter-university Consortium for Political and Social Research (distributor); 2008.

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 who received hospice services.

Demographic Data

Age, gender, race/ethnicity, education.

Schedule

Ongoing.

Contact Information

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

References

Connor SR, Teno J, Spence C, et al. Family Evaluation of Hospice Care: Results from voluntary submission of data via Website. J Pain Symptom Manage 2005;30:9-17.

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 15 sites that collect data on adult patients (age 18 and over) with HIV infection. Each site provides 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, gender, age, race/ethnicity, HIV transmission risk group, insurance status, lowest CD4 count, highest viral load, and detailed information on antiretroviral medications and drugs prescribed to prevent opportunistic infections.

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.

References

HIVnet. HIV Resource Utilization Data Coordinating Center (DCC) project. Rockville, MD: AHRQ; February 2003.

HIV Research Network. Hospital and outpatient health services utilization among HIV-Infected patients in care in 1999. J Acquir Immune Defic Syndr 2002;30:21-26.

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

HCAHPS, 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.

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 over 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 occurred in March 2008.

Schedule

Annual.

Contact Information

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

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

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 levels in order to ensure an adequate number of qualified nursing personnel to meet 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

Gender, education, race, income, ethnicity.

Years Collected

Since 1980.

Schedule

Every 4 years.

Geographic Estimates

National, State.

Contact Information

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

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

References

The registered nurse population: findings from the 2004 National Sample Survey of Registered Nurses. Appendix B: survey methodology. Rockville, MD: HRSA; 2004. Available at: http://bhpr.hrsa.gov/healthworkforce/rnsurvey04/appendixb.htm.

Sponsors

U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), in partnership with the Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS).

Mode of Administration

NCHS conducted telephone interviews for the 2005-2006 survey using computer-assisted telephone interviewing. Trained interviewers called randomly generated numbers to find households with one or more children under age 18. Parents or guardians were asked a series of questions for all children in the household to identify those with special health care needs. If CSHCN were identified in the household, an indepth interview was conducted for one randomly selected child with special health care needs

Survey Sample Design

The NSCSHCN is a module of the State and Local Area Integrated Telephone Survey and uses the same design approach and sampling frame as the National Immunization Survey (NIS); the NSCSHCN immediately follows the NIS in selected households. Independent random samples were taken in all 50 States and the District of Columbia. Approximately 750 CSHCN interviews were conducted for each State's CSHCN population, supplemented by a national referent sample of 4,945 non-CSHCN respondents. Survey data are weighted to reflect the population of noninstitutionalized children under age 18 in each State.

Primary Survey Content

The NSCSHCN provides detailed State and national parent-reported information on the health status and health care system experiences of CSHCN and their families. Topics covered by the survey include health and functional status, status and adequacy of insurance coverage, access to health care services, impact of children's special needs on their families, family-centered aspects of services, and care coordination.

Population Targeted

Children under age 18 with special health care needs. CSHCN are defined as those who have, or are at increased risk for, a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond what is typically required by most children.

Demographic Data

Age, gender, race/ethnicity, family structure, household income.

Years Collected

Two surveys have been conducted: 2001 and 2005-2006. New data elements, wording changes, and skip pattern revisions were introduced between the surveys.

Schedule

Intermittent.

Geographic Estimates

National, State.

Contact Information

Agency home page: http://mchb.hrsa.gov/, http://www.cdc.gov/nchs/.

Data system home page: http://cshcndata.org/Content/Default.aspx.

References

Blumberg SJ, Welch EM, Chowdhury SR, et al. Design and operation of the National Survey of Children With Special Health Care Needs, 2005-2006. Vital Health Stat 2008;1(45). DHHS Publication No. (PHS) 2009-1321. Available at: http://www.cdc.gov/nchs/data/series/sr_01/sr01_045.pdf (Plugin Software Help).

McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137-140.

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 annually for all patients diagnosed or treated for a cancer diagnosis. 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% 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

Age at cancer diagnosis, gender, 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/.

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

References

Bilimoria KY, Stewart AK, Winchester DP, et al. The National Cancer Data Base: a powerful initiative to improve cancer care in America. Ann Surg Oncol 2008 Mar;15(3):683-90. Epub 2008 Jan 9.

Stewart AK, Bland KI, McGinnis LS, et al. Clinical highlights from the National Cancer Data Base. CA Cancer J Clin 2000;50:171-83.

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. J Reg Mgmt 2000;27:68-74.

Sponsor

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

Description

The Kidney Epidemiology and Cost Center at the University of Michigan (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, gender, race, ethnicity, State of residence.

Years Collected

1999 to present. See entry for United States Renal Data System (USRDS) for information on prior years (1993-1999).

Schedule

Ongoing.

Geographic Estimates

National, State.

Contact Information

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

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

References

Guide to the 2003 Dialysis Facility Reports: overview, methodology, and interpretation. Ann Arbor, MI: University of Michigan Kidney Epidemiology and Cost Center; August 2003.

Guide to the 2004 Dialysis Facility Reports: overview, methodology, and interpretation. Ann Arbor, MI: University of Michigan Kidney Epidemiology and Cost Center; August 2004.