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Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) and Hospitalized Elderly Longitudinal Project (HELP), 1989-1997 (ICPSR 2957) RSS

Principal Investigator(s):

Summary:

The objective of the SUPPORT and HELP projects was to improve decision-making in order to address the growing national concern over the loss of control that patients have near the end of life and to reduce the frequency of a mechanical, painful, and prolonged process of dying. SUPPORT comprised a two-year prospective observational study (Phase I) followed by a two-year controlled clinical trial (Phase II). Phase I of SUPPORT collected data from patients accessioned during 1989-1991 to characterize the care, treatment preferences, and patterns of decision-making among critically ill patients. It also served as a preliminary step for devising an intervention strategy for improving critically-ill patients' care and for the construction of statistical models for predicting patient prognosis and functional status. An intervention was implemented in Phase II of SUPPORT, which accessioned patients during 1992-1994. The Phase II intervention provided physicians with accurate predictive information on future functional ability, survival probability to six months, and patients' preferences for end-of-life care. Additionally, a skilled nurse was provided as part of the intervention to elicit patient preferences, provide prognoses, enhance understanding, enable palliative care, and facilitate advance planning. The intervention was expected to increase communication, resulting in earlier decisions to have orders against resuscitation, decrease time that patients spent in undesirable states (e.g., in the Intensive Care Unit, on a ventilator, and in a coma), increase physician understanding of patients' preferences for care, decrease patient pain, and decrease hospital resource use. Data collection in both phases of SUPPORT consisted of questionnaires administered to patients, their surrogates, and physicians, plus chart reviews for abstracting clinical, treatment, and decision information. Phase II also collected information regarding the implementation of the intervention, such as patient-specific logs maintained by nurses assigned to patients as part of the intervention. SUPPORT patients were followed for six months after inclusion in the study. Those who did not die within six months or were lost to follow-up were matched against the National Death Index to identify deaths through 1997. The HELP study was conducted in 1993 concomitantly with Phase II of SUPPORT and collected data to characterize the care, treatment preferences, and patterns of decision-making among hospitalized patients who were at least 80 years old. HELP data were also intended for use in adapting existing mortality and functional status models of elderly hospitalized patients. Data collection methods of HELP were essentially the same as those of SUPPORT. HELP patients were followed for 12 months after inclusion in the study. Patients who did not die within one year or were lost to follow-up were matched against the National Death Index to identify deaths through 1997.

Access Notes

  • One or more files in this study are not available for download due to special restrictions ; consult the restrictions note to learn more. You can apply online for access to the data. A login is required to apply for access. (How to apply.)

    As explained in the ICPSR Processing Note in the codebook, some variables are restricted from general dissemination for reasons of confidentiality. Users interested in obtaining these data must complete an Agreement for the Use of Confidential Data, specify the reasons for the request, and obtain IRB approval or notice of exemption for their research. Apply for access to these data through the ICPSR restricted data contract portal, which can be accessed via the study home page.

Dataset(s)

DS0:  Study-Level Files
Documentation:
DS1:  Physiologic Measurements Data, SUPPORT Phase I - Download All Files (51 MB)
Data:
DS2:  Patient Symptoms Data, SUPPORT Phase I - Download All Files (56.2 MB)
Data:
DS3:  Summary Data, SUPPORT Phase I - Download All Files (45.4 MB)
Data:
DS4:  Physiologic Measurements Data, SUPPORT Phase II - Download All Files (41.9 MB)
Data:
DS5:  Patient Symptoms Data, SUPPORT Phase II - Download All Files (37.2 MB)
Data:
DS6:  Summary Data, SUPPORT Phase II - Download All Files (45 MB)
Data:
DS7:  Physiologic Measurements Data, HELP - Download All Files (37.7 MB)
Data:
DS8:  Summary Data, HELP - Download All Files (38.8 MB)
Data:
DS9:  Physiology Data, SUPPORT Phases I and II and HELP - Download All Files (48 MB)
Data:
DS10:  Key Common Analytical Variables, SUPPORT Phases I and II and HELP - Download All Files (48.2 MB)
Data:
DS11:  SAS Transport File for Parts 1, 2 and 3 - Download All Files (48.1 MB)
Data:
SAS
DS12:  SAS Transport File for Parts 4, 5, and 6 - Download All Files (46.8 MB)
Data:
SAS
DS13:  SAS Transport File for Parts 7 and 8 - Download All Files (39 MB)
Data:
SAS
DS14:  SAS Transport File for Parts 9 and 10 - Download All Files (51.1 MB)
Data:
SAS
DS15:  SAS Transport File for Input Control Datasets - Download All Files (37.1 MB)
Data:
SAS
DS17:  Input Forms and Questionnaires for Phase I of SUPPORT Study
Documentation:
Download:
No downloadable data files available.
DS18:  Input Forms and Questionnaires for Phase II of SUPPORT and HELP Studies
Documentation:
Download:
No downloadable data files available.

Study Description

Citation

Knaus, William, and Joanne Lynn. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) and Hospitalized Elderly Longitudinal Project (HELP), 1989-1997. ICPSR02957-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2001. http://doi.org/10.3886/ICPSR02957.v1

Persistent URL:

Export Citation:

  • RIS (generic format for RefWorks, EndNote, etc.)
  • EndNote XML (EndNote X4.0.1 or higher)

Funding

This study was funded by:

  • Robert Wood Johnson Foundation (23715, 20856)

Scope of Study

Subject Terms:   attitudes toward death, decision making, dying, informed consent, intervention, intervention strategies, patient care, right to die, terminal care, terminal illnesses, treatment

Geographic Coverage:   United States

Time Period:  

  • 1989--1997

Date of Collection:  

  • 1989--1997

Universe:   SUPPORT: Critically ill patients admitted to United States hospitals with advanced stages of serious illness. HELP: Patients 80 years of age or older admitted to United States hospitals.

Data Types:   administrative records data, clinical data, survey data

Data Collection Notes:

This data collection comprises a subset of all the variables generated by the SUPPORT and HELP projects.

Part 15, SAS Transport Library Comprising Input Control Datasets, contains information that the SAS FORMAT procedure can use to construct formats.

The SAS transport files were created using the SAS XPORT engine.

Methodology

Sample:   SUPPORT: All patients in five United States medical centers who met inclusion and exclusion criteria for nine disease categories: acute respiratory failure, chronic obstructive pulmonary disease, congestive heart failure, liver disease, coma, colon cancer, lung cancer, multiple organ system failure with malignancy, and multiple organ system failure with sepsis. Phase I of SUPPORT accessioned 4,301 patients from June 12, 1989, through June 11, 1991, and in Phase II, 4,804 patients were accessioned from January 7, 1992, through January 24, 1994. HELP: A random sample of 1,176 patients at least 80 years old who were admitted to four United States hospitals from January 21, 1993, through November 21, 1993. Patients meeting the HELP age criterion were excluded if they were admitted electively for surgery or invasive radiographic procedures, were not English-speaking, were admitted for trauma except falls, were admitted to hospice care, were foreign nationals whose purpose for entry in the United States was medical treatment or who became ill while visiting the United States, had an AIDS diagnosis, had a planned discharge of less than 72 hours, transferred from another hospital to a nonintensive unit, were admitted to psychiatry, or were discharged or died within 48 hours of admission. All patients admitted into SUPPORT were automatically screened for the HELP project. As a result of this screening, 90 SUPPORT patients were enrolled in HELP as well as SUPPORT, yielding a total of 1,266 HELP patients.

Data Source:

medical records, personal interviews, and the National Death Index

Version(s)

Original ICPSR Release:  

Version History:

  • 2006-01-12 All files were removed from dataset 16 and flagged as study-level files, so that they will accompany all downloads.

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