End-Stage Renal Disease (ESRD): Transplantation, Dialysis, and Quality of Life in Michigan, 1984-1988 (ICPSR 9393)
Principal Investigator(s): Hawthorne, Victor M.; Port, Friedrich K.; Julius, Mara, et al.
This study investigated survival rates, quality of life, and costs of four major treatments for end-stage renal disease (ESRD) patients in Michigan. The project began in 1984 and continued through 1988. The four treatments studied were in-center hemodialysis, continuous ambulatory peritoneal dialysis (CAPD), transplantation from nonrelated, nonliving donors (cadaver transplants), and transplantation from related living donors (related transplants). A major advantage for the project in relation to other large-scale research studies on ESRD patients was access to comprehensive data bases maintained by the Michigan Kidney Registry (MKR) and the Organ Procurement Agency of Michigan (OPAM) to identify the sample and provide treatment and survival data. Records on medical expenditures for treatment were obtained from the United States' Health Care Financing Administration. Data on the quality of life during treatment were collected by personal interviews with patients over the four-year span needed to accumulate the desired number of cases. The personal interview schedule included measures of subjective well-being, such as mood states, satisfaction with various aspects of life, and other widely-used scales such as Activities of Daily Living, Sickness Impact Profile, and Bradburn Affect Balance Scale. Items on standard demographics, the clinical and symptomatic picture of the disease, and the respondents' social support systems were also included in the interview.
These data are freely available.
Hawthorne, Victor M., Friedrich K. Port, and Mara, et al. Julius. End-Stage Renal Disease (ESRD): Transplantation, Dialysis, and Quality of Life in Michigan, 1984-1988. ICPSR09393-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 1991. doi:10.3886/ICPSR09393.v1
Persistent URL: http://doi.org/10.3886/ICPSR09393.v1
This survey was funded by:
- Michigan Department of Public Health
- United States Department of Health and Human Services. Health Care Financing Administration (14-C-98372/5, 01-05)
Scope of Study
Date of Collection:
Universe: Patients with onset of chronic kidney failure between 1981 and 1986, aged 18 or more at this diagnosis and living in Michigan, who six months after the diagnosis were receiving or awaiting one of the four major treatment modalities (in-center hemodialysis, CAPD, cadaver transplant, and related transplant). The sampling frame was the Michigan Kidney Registry (MKR), a data base accumulated from an obligatory statewide health information system drawing on all treatment facilities caring for Michigan residents with ESRD, and recording data on demographic characteristics, hospitalization, treatment history, and survival. At six months after whatever initial form of treatment was available (usually in-center hemodialysis), most patients would have other options identified, evaluated, approved, and the treatment of choice underway (except for those awaiting cadaver transplants according to the Organ Procurement Agency of Michigan).
Data Types: administrative records data, medical records, survey data
Data Collection Notes:
The age distribution for the sample was ages 19-40 (N = 583), 41-60 (N = 612), 61-90 (N = 380). Since the unit of observation in the dataset is the interview rather than the person, these totals include ages at the second and third interviews as well as those at the first. In addition to cross-sectional data on 1,017 patients, second and third interviews were conducted with 410 and 148 of the patients, respectively. Filtering variables are provided to facilitate analyses from first interviews only, from the most recent (or last) interviews, or to omit the data from the supplementary sample of related transplants.
Sample: A goal of 100 interviews in 1984 and 500 in each of the next three years was set. The plan was to accumulate at least 40 observations per treatment modality for each six month duration period beginning at seven months after start of treatment for ESRD and continuing through five years. Representative samples, stratified by duration, were taken of all in-center hemodialysis patients. Representative samples were also possible for CAPD patients in shorter duration groups. CAPD patients of longer duration, however, were scarce (this was a new treatment in Michigan in the early 1980s), so all available patients were included. The number of transplant patients of both types was also found to be insufficient to meet the quota for the duration/treatment criteria. Therefore, all available transplant patients meeting other criteria were selected to be interviewed, along with a supplementary group of related transplant patients (defined as anyone with onset after June 1981 who had ever received a related-donor transplant).
personal interviews, Michigan Kidney Registry (MKR), Organ Procurement Agency of Michigan (OPAM), and National Health Care Financing Administration (HCFA)
Original ICPSR Release: 1991-03-05
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