The Health Insurance Portability and Accountability Act (HIPAA) includes enhanced privacy rules that took effect on April 14, 2003. This new federal law appropriately obscures the identity of patients to outside scrutiny, but in doing so, has made it more difficult to locate patients and or obtain specific data on a given individual. Some of the information for this study was obtained prior to the effective date and was exempt. We were able to obtain descriptive, demographic data of a general nature on patients with Parkinson’s disease in South Carolina. Our prevalence data was obtained from the UB-92 billing data referenced below. South Carolina is unique in that it is one of only very few states to have this central repository of data. The UB-92 billing system is an unduplicated count of persons admitted to a South Carolina acute care hospital or visiting an emergency room. This data includes all payors, but not unfunded or uninsured patients. We have gathered data over a 5-year period (1996-2000) for patients with a diagnosis of ICD-9 code 332.0 (paralysis agitans or idiopathic Parkinson’s disease) or 332.1 (secondary Parkinson’s patients in the state. We feel that this is an accurate number as previous case-finding surveys performed in the Province of Ontario, Canada, revealed that roughly 60 percent of Parkinson’s disease patients will seek hospital care over a given period of time. Map A |  | Hospital/ER Visits for Parkinson's Disease Black South Carolinians
1996-2000
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This prevalence data is sorted by county and rate per 10,000 population (see Map A). Counties vary greatly with regard to prevalence as demonstrated by shades of color representing density by quartiles. The reason for this variation is unclear. It could be that there are fewer Parkinson’s patients in these areas, or perhaps it is due to access to healthcare, as well as undiagnosed cases. In addition, patients may be referred elsewhere across state borders. Finally, it could be related to the exposure to environmental factors, such as pesticides or agricultural chemicals. These have been associated with higher rates of disease in rural areas. Parkinson’s Disease Data by County and Race
The prevalence data is sorted by race and rate per 10,000 population (see Map B). The turquoise numbers are African-American prevalence per 10,000. The red numbers are the prevalence of PD in Caucasians per 10,000. What we discovered in almost every case is that the prevalence of PD in residents of European origin is much higher than the prevalence of African-Americans, even in counties with a predominantly African-American population. Map B |  | Hospital/ER Visits for Parkinson's Disease
White South Carolinians
1996-2000
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We know from other epidemiological studies that people of European origin in America do have a higher incidence of Parkinson’s than African-Americans. A door-to-door epidemiological studying Copiah County, Mississippi, that suggests that while the Caucasian prevalence rate of PD is 175 per 100,000, the African-American prevalence rate is 65-70 percent of that total. According to data from UB92 repository, the African-American prevalence in South Carolina is 25 percent of the European origin rate. We think that much of this discrepancy may be related to poorer access to healthcare. Given possible economic rationing, lack of access to physicians, or the presence of many medically underserved counties in South Carolina, the African-American population suffers with regard to diagnosis of Parkinson’s disease. African-Americans are not evenly distributed across the state. The coral colored counties represent less than 30 percent African-Americans as opposed to the blue counties at the other end of the spectrum where there are greater than 50 percent or more African-Americans. In counties where there are higher percentages of African-Americans, one can see that more African Americans are being diagnosed proportionally. We can speculate about this finding, but no clear explanation is evident. However, this information has led to one of our “spin-off” projects: “Geographic Variation of Parkinson's Disease in South Carolina: An assessment of risk factors related to hydrologic and other environmental exposures.” Economic Burden of Parkinson’s Disease
Next, we looked at the economic burden of Parkinson’s disease hospitalizations In 2002, 325 patients went to the emergency room or were discharged from the hospital with a primary diagnosis of Parkinson’s disease. The discharge costs for this group totaled $4.5 million. This is significant since little treatment for a Parkinson’s patient actually takes place in a hospital setting. Pharmacological control of the disorder generally results in very few disease-related hospitalizations over the course of the illness. We have also looked at the co-morbidities of these patients with a secondary diagnosis of Parkinson’s disease. This means they could have been admitted for pneumonia, heart attack, etc. with Parkinson’s disease as a secondary diagnosis. In a single year the total charges for this group was $61 million. This data reflects the economics of insured patients. No reliable data exists for the cost of care for unfunded Parkinson patients. This is likely to be a significant amount as being unfunded probably results in less accurate diagnosis and treatment of Parkinson’s disease in poor people. This would result in proportionally more ER visits and hospital stays than in people with adequate outpatient care.
References:
Office of Research and Statistics Web site; URL: http://www.ors2.state.sc.us. Guttman M, Slaughter PM, Theriault ME, et al. Burden of parkinsonism: a population-based study. Movement Disorders. 2003, 18(3): 313-320. Schoenberg BS, Anderson DW, Haerer AF. Prevalence of Parkinson’s disease in the biracial population of Copiah County, Mississippi. Neurology. 1985;35:841-845. | 
