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Pages 313-327

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From page 313...
... Renal Data System and the scientific registry of the United Network for Organ Sharing. Chapter 14 addresses ESRD-related research needs, emphasizing the importance of a comprehensive approach that spans laboratory and clinical research, epidemiology, and health services research.
From page 315...
... Divided management resulted in continuing datasystem chaos. As a consequence, data about the ESRD patient population and the ESRD program are incomplete for the 1970s.
From page 316...
... In 1981, adjustments were made in the data collection process: Reporting of the onset of ESRD was tied to the entitlement; a new Medical Evidence Form was introduced, consolidating the previous form and the request for entitlement form, and reducing the content of information collected. Since that time, there has been continuous improvement in the quality and completeness of these HCFA data.
From page 317...
... Utilization records with Medicare Parts A and B billing information for beneficiaries including ESRD patients Hospital Inpatient Stay Record File, PMMIS 2728 Chronic Renal Disease Medical Evidence File, PMMIS Medical Evidence Report 2742 ESRD Patient History and PMMIS Treatment Plan 2745 ESRD Transplant Information Transplant File, PMMIS a ESRD Transplant Follow-up Transplant File, PMMIS 2746 ESRD Death Notification Patient Identification File, PMMIS Provider-Specific Information: Medicare Certification PMMIS Approval Notice 2744 ESRD Facility Survey Provider File, PMMIS 2552 Cost Report Information System Outpatient dialysis facilities' cost reports a Not applicable. NOTE: The ESRD Program Management and Medical Information System has 6 statistical files; 5 of these files are mentioned above; the 6th file is the Quarterly Dialysis File.
From page 318...
... Report on the incidence, prevalence, and mortality rates and trends over time by primary diagnosis, treatment modality, and other sociodemographic variables; (3) Develop and analyze aggregate data on the effect of various modalities of treatment by disease and patient group, including examination of the prevention and progression of renal disease with special emphasis on mortality, morbidity, and quality-of-life criteria; and (4)
From page 319...
... hospitalization among dialysis patients and transplant recipients in the United States. In addition to these eight, 11 studies have been approved for implementation once resources become available.
From page 320...
... The committee notes a tendency among renal providers to urge that USRDS assume quasi-operational roles in the Medicare ESRD program, especially in the quality assurance area. The committee believes that USRDS should be limited to registry and research functions and that operational responsibilities of HCFA in quality assessment and assurance, for example, should properly be exercised by it.
From page 321...
... These include the effect of six-antigen HLA matching on renal transplantation outcome, examination of outcomes among Native Americans, and a comprehensive study of waiting-list data. The waiting-list study has recently been completed and submitted for publication.
From page 322...
... It did refer, however, to studies of relative efficacy of ESRD treatments "in terms of criteria ranging from mortality rates to quality of life," which might easily be construed as consistent with the statute's expressed concern for mortality, morbidity, and "other indices of quality." Controversy has focused on one substantive issue. Subsequent to the contract award, NIDDK barred USRDS from linking epidemiologic and economic data on the grounds that it (NIDDK)
From page 323...
... However, they do not respond adequately to all the quality assurance (QA) needs of the Medicare ESRD program, which this committee has emphasized strongly in the previous chapters.
From page 324...
... They require the active involvement of physicians trained analytically in health services research, especially quality assessment, functional- and health-status assessment, severity-of-illness adjustment, and related fields. This argues for augmenting the expertise of the nephrology community with that of the health services research community.
From page 325...
... , exceptions status, and ownership and chain affiliation. RECOMMENDATIONS The committee recommends that: · With respect to ESRD data, HCFA maintain a strong ESRD data acquisition and analysis capability; modify the patient medical evidence form to collect data on comorbid conditions, risk factors, functional status, and other factors bearing on treatment and outcomes; identify data needs for systematically analyzing the relationships between resource use, treatment, and patient outcomes; fund research pertinent to these questions; and provide publicly available tapes for research on all aspects of the ESRD program to the interested research community.
From page 326...
... · With respect to the ESRD program quality assessment and assurance efforts called for by this committee, USRDS efforts be augmented by an appropriate HCFA effort to develop or adapt QA measures and instruments for the ESRD setting and that the necessary related research be supported.
From page 327...
... 1990. Annual Report on the Scientific Registry for Organ Transplantation and the Organ Procurement and Transplantation Network, 1988 & 1989.


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