Data Sources
Miscellaneous and Multisource Sponsors
Family Evaluation of Hospice Care Survey
Sponsor
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 member(s) of hospice patients after the patient's death.
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 the patient's death and requested to take part in the survey. Data are submitted to NHPCO for consolidation.
Population Targeted
Persons receiving hospice services.
Demographic Data
Age, gender, race/ethnicity, educational level.
References
Connor SR, Teno J, Spence C, Smith N. Family evaluation of hospice care: results from voluntary submission of data via website. Journal of Pain and Symptom Management, July 2005; 30: 9–17.
HIV Research Network (HIVRN)
Sponsor
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 HIV Research Network 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, gender, age, race/ethnicity, HIV transmission risk group, insurance status, lowest CD4 count, and highest viral load. Data have been abstracted and analyzed covering 2000 and 2001.
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.
References
HIVnet. HIV Resource Utilization Data Coordinating Center (DCC) project. February 2003. Agency for Healthcare Research and Quality, Rockville, MD. http://www.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: 21–26.
University of Michigan Kidney Epidemiology and Cost Center
Sponsor
University of Michigan with funding from 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 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 end-stage renal disease 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).
Geographic Estimates
National and State levels.
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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