Comparing the national statistics for prevalence of Parkinson’s disease and the UB-92 billing data, we have more than 13,000 Parkinson’s disease patients in South Carolina. There are many others, undiagnosed, misdiagnosed, or without access to health care. It is clear that there is a racial disparity in the recognition of the disease, as well as geographic disparities. However, there also appears to be areas of increased prevalence of Parkinson’s disease in the state. Whether this is due to access to healthcare and/or location of neurologists or a real increase in prevalence remains to be determined. We are currently studying this more fully. Referrals are important in the diagnosis and management of Parkinson’s disease. In approximately 50 percent of the counties in South Carolina, there is no neurologist, leaving initial diagnosis and early management of Parkinson’s disease to the primary care physician. This has long term implications for patient morbidity, survival and quality of life. It is apparent that the referrals to the tertiary care centers are affected by access to a local neurologist and established referral patterns. Parkinson’s disease causes significant economic burden to the citizens and the state of South Carolina. According to a study conducted at Duke in 1997 the estimated annual cost (direct and indirect) of Parkinson’s disease is $25,000 per patient. Directs costs include expenditures for pharmaceuticals, physician office visits, emergency room care, inpatient hospital visits, and special care, including costs of transportation and special equipment or modifications to the home or car. Indirect costs are related to changes in worker productivity. With an estimated 13,000 patients with Parkinson’s disease in South Carolina at an annual cost of $25,000 per patient, this societal burden would total $325 million. The total charges for patients discharged from the hospital with Parkinson’s disease as the primary diagnosis in a single year is $4.5 million. In small surveys we have conducted, healthcare providers (primary care physicians in particular) acknowledged their lack of knowledge regarding Parkinson’s disease and their interest in increasing their knowledge. This is a vital point since they will be the initial, and possibly only, contact in diagnosing Parkinson’s disease in the rural community. Their area of interest is diagnosis and early management of Parkinson’s disease. On the other hand, the caregivers’ interest is in the management and complications of Parkinson’s disease in its later stages, when caregiver burden is high and the interventions are often more social than pharmacological. However, physicians commonly cite time and cost as barriers to participation in educational seminars in a recent Movement Disorders Society survey (Moving Along, 2003; 5(3):10). After reviewing top selling books on Parkinson’s disease and Internet resources, there is no comprehensive source of information on the self-management of Parkinson’s disease. Internet resources are limited to those with computer skills and Web access. Support groups in South Carolina are located in metropolitan areas and may not be accessible to everyone, especially those in rural areas. None of the current best selling books cover what we consider to be essential topics in Parkinson’s disease. Access to healthcare, physician knowledge, and health resources in the state are limited and are not specific to Parkinson’s disease. In summary, Parkinson’s disease is an expensive outpatient disease. There are limited resources and many barriers to diagnosis and treatment. Healthcare providers recognize the knowledge deficit and are interested in increasing their knowledge. There are no lay resources available that offer comprehensive management of Parkinson’s Disease in the vacuum of traditional health care resources. |
