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Kidney Failure and the Federal Government (1991)
Institute of Medicine (IOM)

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. "The ESRD Patient Population: Special Groups." Kidney Failure and the Federal Government. Washington, DC: The National Academies Press, 1991.

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Kidney Failure and the Federal Government

TABLE 5-1 Incidence and Prevalence of Pediatric End-Stage Renal Disease (ESRD) Patients, 1978 and 1987

 

Age Group (years)

 

0–1

1–4

5–9

10–14

15–19

All

Incidence

 

 

 

 

 

 

1978

12

25

81

208

428

754

1987

52

68

110

194

470

894

Increase (%)

333

172

36

-5

9

19

Prevalence

 

 

 

 

 

 

1978

a

43

195

546

1,348

2,132

1987

a

262

536

930

2,203

3,931

Increase (%)

a

446

175

70

63

84

a Excluded because of small numbers.

SOURCE: P.W. Eggers (Health Care Financing Administration), S.R. Alexander (Southwestern Medical Center, University of Texas, Dallas), and J.E. Lewy (Tulane University School of Medicine, New Orleans, Louisiana), unpublished data, 1990.

have similar incidence rates until their early teens, when incidence rates among blacks begin to exceed those among whites. By ages 16 to 18 years, rates among blacks are about twice those among whites.

The increasing incidence in younger age groups combined with improved survival resulted in nearly a twofold increase in prevalence of pediatric patients between 1978 and 1987 (Table 5-1). In 1988, there were 833 new pediatric patients in the Medicare ESRD program, or 2.3 percent of all new patients; prevalence was 4,069, or 2.8 percent of all patients.

Many quality-of-life factors are unique to pediatric patients. These include growth retardation, delayed pubertal development, transfusion-dependent anemia, bone and neurologic abnormalities, as well as psychosocial and educational problems. The burdens common to all ESRD patients are often greater for pediatric patients.

The increased incidence and survival of infants and preschool children with ESRD leads to increased comorbidities and treatment problems in the older pediatric population. Major physical problems, such as bone deformities and inhibited growth, are more severe in infants and young children than in those who acquire ESRD at older ages.

Transplantation is the preferred treatment for almost all children; the needs for physical growth and pubertal development are better met through transplantation than dialysis. Table 5-2 shows the change between 1978 and

Page
86
Front Matter (R1-R14)
Part I: Overview, Summary (1-22)
Introduction (23-36)
Part II: Patients and Providers, Perspectives of ESRD Patients (37-50)
Ethical Issues (51-61)
The Patient Population (62-84)
The ESRD Patient Population: Special Groups (85-109)
Structure of the Provider Community (110-132)
Part III: Access, Access Problems of ESRD Patients (133-166)
Access to Kidney Transplantation (167-188)
Part IV: Reimbursement and Quality, Medicare ESRD Payment Policy (189-211)
Reimbusement Effects on Quality (212-235)
Outpatient Dialysis Reimbursement Issues (236-273)
Quality Assessment and Assurance (274-312)
Part V: Data and Research, Data Systems (313-327)
Research Needs (328-334)
Appendix A: Glossary (335-346)
Appendix B: Acronyms and Initialisms (347-350)
Appendix C: Commissioned Papers and Contractor Reports (351-352)
Appendix D: Survival Analysis Methods for the End-Stage Renal Disease (ESRD) Program of Medicare (353-400)
Appendix E: Institute of Medicine ESRD Study Committee Public Hearing, May 5, 1989, Chicago, Illinois (401-402)
Appendix F: Institute of Medicine ESRD Study Committee Public Hearing on (403-404)
Appendix G: Institute of Medicine ESRD Study Committee Workshop on ESRD Staffing, November 3, 1989, Washington, D.C. (405-405)
Appendix H: Institute of Medicine ESRD Study Committee Workshop on Kidney Transplantation, December 13, 1989, Washington, D.C. (406-407)
Appendix I: Institute of Medicine ESRD Study Committee Workshop on Black and Other Nonwhite ESRD Patients, May 15, 1990, Washington, D.C. (408-408)
Appendix J: Institute of Medicine ESRD Study Committee ESRD Patient Focus-Group Participants (409-410)
Index (411-426)