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Current Trends Economic Burden of Spina Bifida -- United States, 1980-1990

Spina bifida is one of the most common and disabling birth defects and results in varying degrees of paralysis from permanent damage to the spinal cord and spinal nerves. Based on rates from CDC's Birth Defects Monitoring Program (1), from 1980 through 1987, an estimated 13,600 infants born in the United States had spina bifida without anencephaly. Of these, approximately 3800 have died as a result of their defects. Although the estimated rate of infants born with spina bifida has decreased from 1980 (5.2/10,000 live births) through 1987 (4.3/10,000 live births), a substantial number of infants survive into childhood each year; an estimated 9800 children born with spina bifida between 1980 and 1987 were alive in 1987. Even if the rate of infants born with spina bifida continues to decline at the same rate from 1988 through 1990, the number of surviving children born with spina bifida since 1980 will be approximately 13,000 by the end of 1990 (Figure 1). Spina bifida-associated damage to the spinal cord produces severe disabilities requiring extensive medical and surgical care. In the United States, infants with spina bifida routinely receive vigorous medical therapy and undergo repeated surgical procedures to survive and to reach their maximum functional capacity. At birth, the spinal defect is closed surgically. Because the severe spinal nerve damage impairs lower extremity motor functions, many children are confined to wheelchairs, although others can walk with the assistance of braces. Almost all require multiple orthopedic surgical operations. Bladder and sphincter control are also affected, causing chronic urinary tract infections. Hydrocephalus is usually associated with spina bifida and requires insertion of a shunt to relieve intracranial pressure and to prevent brain damage. These shunts often require multiple revisions and replacement during childhood. Throughout childhood, adolescence, and adulthood, the management of the Arnold-Chiari malformation (a malformation of the cerebellum and medulla oblongata) associated with spina bifida and of urologic problems often requires more surgical procedures. National estimates of the total cost to society for medical care, education, and lost productivity are difficult to calculate for several reasons. The current prevalence of spina bifida in older cohorts is unknown. Also, data on the educational and employment patterns of persons with spina bifida are unavailable, as are valid national data on costs of medical and surgical treatment and other therapies. CDC has estimated the direct medical costs by using average annual age-specific charges* for medical and surgical procedures for open spina bifida from North Carolina (2). These cost estimates were applied to the estimated cohorts of surviving children born since 1980 to arrive at the projected annual costs (in 1985 dollars, not discounted) from 1980 through 1990 (Figure 2). If the costs for all children born with spina bifida from 1980 through 1990 are discounted by 5%, the resulting present value (using 1985 as the base year) exceeds $775 million. Reported by: Birth Defects and Genetic Diseases Br and Developmental Disabilities Br, Div of Birth Defects and Developmental Disabilities, Center for Environmental Health and Injury Control, CDC.

Editorial Note

Editorial Note: Spina bifida is a major contributor to morbidity and mortality in childhood. The rate of spina bifida in the United States has been declining and now is among the lowest in the world. Nevertheless, each year approximately 1500 infants are born in the United States with spina bifida; more than 1000 of these survive into childhood (Figure 1). The highest estimated U.S. rates of spina bifida--about 10/ 10,000 live births--are in Appalachia (3). Annual medical and surgical care costs in the United States for all persons with spina bifida probably exceed $200 million. In 1990, the average annual cost for medical and surgical care for all surviving children born since 1980 will approach $100 million (Figure 2). However, this estimate excludes costs generated since 1980 for all persons born with spina bifida before 1980. These cohorts are as large as those born after 1980; therefore, it is likely that their costs would equal or exceed those of the post-1980 cohorts. For a person with typical severe spina bifida, estimated lifetime costs--including direct costs such as medical and surgical care, long-term care, disability, and education, and indirect costs such as survivor productivity effects and loss of parental income--are $250,000 (in 1985 dollars discounted by 5%) (2). The descriptive epidemiology of spina bifida and anencephaly has suggested hypotheses regarding environmental (nongenetic) factors as important contributors to causing most of these defects. In the last 50 years, epidemics of spina bifida have occurred in Boston; Rochester, New York; Dublin, Ireland; and northern People's Republic of China (4,5). Rates of spina bifida vary widely among countries and by geographical regions within countries. The current highest reported rate is 37/10,000 births in rural northern People's Republic of China (5), about nine times the total U.S. rate of 4.3/10,000 live births in 1987. Low socioeconomic status has been strongly associated with risk for these defects in many populations. The causes of spina bifida must be identified to design effective primary prevention. These epidemiologic findings suggest that such identification may be possible. Nutritional status has been widely studied as a risk factor for spina bifida in the last decade. In particular, periconceptional vitamin supplementation in women who previously had had an affected infant was studied in a nonrandomized clinical trial and reported in 1981 to be protective (6). However, 95% of all infants with spina bifida are born to women who have never had an affected infant. A CDC case-control study of a large group of these women showed that those who reported using multivitamin supplementation during the periconceptional period had a 50% reduction in the incidence of spina bifida in their children (7,8). It cannot yet be determined whether the apparent protective effect associated with multivitamins results directly from multivitamin use or from other characteristics of women who use vitamins. Therefore, the evidence accumulated to date does not support recommendation of a national policy for treating all women at risk for pregnancy with multivitamins. Well-designed randomized clinical trials would be a means by which to examine this issue further.

References

  1. CDC. Congenital malformations surveillance report: January 1982-December 1985. Atlanta: US Department of Health and Human Services, Public Health Service, 1988. 2.Lipscomb J. Human capital, willingness-to-pay and cost-effectiveness analyses of screening for birth defects in North Carolina (Working paper). Durham, North Carolina: Duke University, Institute of Policy Sciences and Public Affairs, 1986. 3.Greenberg F, James LM, Oakley GP Jr. Estimates of birth prevalence rates of spina bifida in the United States from computer-generated maps. Am J Obstet Gynecol 1983;145:570-3. 4.Elwood JM, Elwood JH. Epidemiology of anencephalus and spina bifida. Oxford: Oxford University Press, 1980. 5.Lian ZH, Yang HY, Li Z. Neural tube defects in Beijing-Tianjin area of China: urban rural distribution and some other epidemiological characteristics. J Epidemiol Community Health 1987;41:259-62. 6.Smithells RW, Nevin NC, Seller MJ, et al. Further experience of vitamin supplementation for prevention of neural tube defect recurrences. Lancet 1983;1:1027-31. 7.Mulinare J, Cordero JF, Erickson JD, Berry RJ. Periconceptional use of multivitamins and the occurrence of neural tube defects. JAMA 1988;260:3141-5. 8.CDC. Periconceptional use of multivitamins and the occurrence of anencephaly and spina bifida. MMWR 1988;37:727-30. *While charges are generally not the best measure of the incremental, or marginal, resource cost of medical care, they are the appropriate means of measuring the financial burden of care on parents, private insurers, and government.



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