IX. Untapped Data We mentioned at the outset four sources of data that had already been gathered and that could be tallied and analyzed to obtain incidence and prevalence data. 1. National Heath Care Survey. A possibly significant and as yet untapped source of Parkinson's disease incidence and prevalence data is the National Center for Health Statistics (NCHS), a branch of the U.S. Center for Disease Control. The NCHS conducts the ongoing National Health Care Survey, which is actually a group of many individual surveys. More detail about these surveys can be found at the NCHS web page http://www.cdc.gov/nchswww/about/major/nhcs/nhcs.htm. The surveys which contain data which is particularly relevant to our question are the National Ambulatory Medical Care Survey (NAMCS) and the National Nursing Home Survey (NNHS). The NNHS was discussed above. The NAMCS, which has been conducted annually, provides data on visits to physicians, emergency rooms and outpatient clinics, including physicians' diagnoses and medications. The survey sample consists of some 40,000 visits to about 3000 physicians. Recently Hospital clinic visits have been surveyed separately by means of the new National Hospital Ambulatory Medical Survey (NHAMS). The published reports of the surveys, which can be viewed on-line, do not break down the results to show every disease. But the detail files of the questionnaire response data contain individual patient diagnoses. These detail files, which are on CD-ROMs, can be purchased from the National Technical Information Service. Also, major university libraries have copies of the CD-ROMs in their collections, where they are available to student and faculty researchers. All that is needed is to tally and analyze the data. Allowance must be made for the fact that the NAMCS data is about visits, not patients. There appears to be no patient identifier which ties together different visits by the same patient. Thus an average visits per patient factor needs to be developed for each diagnosis in order to use this data for computing prevalence. As far as incidence goes, there does not appear to be data to indicate that a diagnosis is new. 2. Pharmacy data. Methodological studies of drug sales conclude that drug sales are a good proxy indicator of prevalence (5). The principal Parkinson's drug levodopa and the dopamine agonists are good identifiers of Parkinson's patients, because they are not generally used for treating other conditions, and because most people in treatment for Parkinson's disease take them. Since individual Parkinson's patients may be taking any number of combinations of the available drugs, or even no drugs at all, sales volume in itself is not useful. But if it were possible through a broadly representative survey to determine an average drug profile, then total sales divided by average individual utilization would approximate the number of patients in treatment. Pharmacy customer file data would also be useful. The ratio of the number of all pharmacy customers receiving Parkinson's disease drug prescriptions to the total of all customers receiving any drug prescriptions in the same period could be determined. This could then be used in combination with estimates from the National Health Interview Survey of the numbers of people in the U.S. who made visits to physician offices and hospital clinics for whom drugs were prescribed. The tally of such people could be multiplied by the ratio of pharmacy customers receiving Parkinson's disease drugs to all pharmacy drug customers to give an estimate of the number of people with Parkinson's disease who are in treatment. It is worth mentioning in this connection that there are commercial firms that determine and make available (for a cost) to the health industry information on what is referred to as the "disease market," including incidence and prevalence. One of these is Menlo Biomedical Associates of Santa Cruz, Ca. They maintain a website at http://www.mbio.com for their clients, who may select diseases and view the "market value." 3. Insurance claims data. Insurance claims data contains patient identifiers and diagnoses. It would be technically simple to tally patients in the claims files by diagnosis. Probably the third party payers already produce or have the capability of producing such totals. What would be difficult is the administrative aspect of assembling or even getting access to the data or obtaining an extract thereof. Of course this data does not include people who are uninsured. However, there are estimates of the numbers of people who are uninsured, and one would expect the prevalence of Parkinson's disease among them to be similar. 4. Medical records data. A good example of a large medical facility with an extensive patient population is the Northwest Division of Kaiser Permanente. Their databases contain the medical records of 400,000 people in northwestern Oregon and Southwestern Washington State. The Center for Health Research is an independent organization which conducts epidemiological studies using the Division's databases. (We have seen no reference to any CHR studies about the incidence and prevalence of Parkinson's disease.) The CHR believes that the medical records are strongly representative of the entire population of that area. For further information, see the CHR web pages starting at http://www.kpnw.org/~chr. X. Parkinson's Disease and the NHIS: A Serious Omission In the ongoing National Health Interview Survey (NHIS), sample households are surveyed by U.S. Census personnel, who ask a set of health-related questions (30). One category of data that the survey collects is "chronic conditions." Interviewees are asked whether they have any of a number of "conditions" from a "conditions list," which is a checklist component of the questionnaire. Within the checklist there is a sub-category of "conditions affecting the nervous system." The specific conditions which are listed in this sub-category are "epilepsy; REPEATED seizures, convulsions or blackouts; multiple sclerosis; migraine; FREQUENT headaches; and neuralgia or neuritis." (The bold capital letters occur on the questionnaire form.) We do not know why just these specific conditions are listed. But for some reason, if not from pure oversight, Parkinson's disease is missing from the checklist. There is another opportunity to report Parkinson's disease in the survey, but only as required by the context. It is in the section intended to count people having limitations on activities. Interviewees are asked whether there is any impairment or health problem 1) that prevents them from working or doing housework, 2) that limits them in any way in any activities, and 3) that requires assistance in personal care activities, and if so, what is the impairment or problem in each of these instances. The same question is also asked in regard to children not being able to attend school. Any "condition" or "impairment" may be given in answer to these questions. Several may be recorded in each case, although the interviewees must designate one as the major cause of the limitation. But such questions are apparently intended to indicate time or productivity lost due to ill health, and not disease prevalence. The National Center for Health Statistics recognizes the importance of including specific conditions on its survey checklist. In the NCHS publication, "Prevalence of Selected Chronic Conditions: United States, 1990-92," a description of data collection methods states, "Methodological studies have shown that chronic conditions are generally underreported in interview surveys...Methodological studies have also indicated that inclusion of a checklist of descriptive condition titles as part of the interview questionnaire increases the probability that a respondent will recognize the terms and report those of which the respondent is aware" (19). If Parkinson's disease were on the checklist, the NHIS would be an important source of data on prevalence of Parkinson's disease, and we would have additional data to draw on to answer our question. Including Parkinson's disease in the NHIS would also increase public awareness. There are a number of statistical reference sources on health, chronic illness and aging, both government and commercially published, which lack any mention of Parkinson's disease. They often cite the NHIS as the source of information, and they fail to mention Parkinson's disease. In this manner the omission gets propagated. XI. Conclusions If we wanted to find the prevalence of many major chronic conditions in the United States, such as multiple sclerosis, epilepsy, heart disease, headaches, asthma, diabetes, anemia etc. we could look in reference books or U.S. government publications on health statistics and find this data. Yet we cannot currently answer this question about Parkinson's disease with any degree of certainty. There are estimates that at least one million people in the U.S. are affected by Parkinson's disease, and this number will grow as the population ages. Yet when we turn on the T.V. or radio, or read the newspapers or publications on chronic disease in the U.S., we rarely find mention of Parkinson's disease. When we talk to the politicians about the inequitable government funding for Parkinson's disease research, we find they have very little awareness of the impact of this disease. These are but a few of the reasons why we need to obtain and publish better information on the incidence and prevalence of Parkinson's Disease, as well as on the other epidemiological aspects of the disease. Epidemiological studies could not only help researchers determine the number of PWP, but could also help identify environmental, geographical, occupational, socioeconomic, dietary, and health-related factors that might lead to preventative measures. We have seen that existing epidemiological studies apply to only a few areas of the U.S. Generalizing from the study data to the U.S. as a whole is uncertain. The prevalence estimates of 1 or more million cases in the U.S. appear to be based on more than the data from the epidemiological surveys. Compensation for cases missed in the surveys, in particular, rough estimates of numbers of people in undiagnosed and pre-symptomatic stages of the disease, appear to be included. These estimates have been produced by processes which have not been documented. There has been no comprehensive effort to survey the U.S. as a whole. To do this accurately would require an effort greater in magnitude than any of the previous studies. We offer a few suggestions to remedy this situation. There are surely many others. 1. Data gathered by the National Center for Health Statistics which identifies people with Parkinson's disease by diagnosis needs to be tallied and analyzed. 2. Studies of the pharmaceutical companies' sales of Parkinson drugs, and also tallies of pharmacy customers taking Parkinson drugs could be useful as surrogate measures of Parkinson's disease prevalence. Perhaps this is an area of study that the pharmaceutical companies could become involved in. 3. Numbers of patients in files of insurers and large health care organizations that contain diagnosis data could be tallied and analyzed. 4. The NCHS should include Parkinson's disease on it's checklist of chronic conditions for the National Health Interview Survey. By doing so, it is more likely that Parkinson's disease data will appear in the NCHS's relevant survey reports, and subsequently in other publications on health statistics. Also, the Morris K. Udall Act for Parkinson's Research and Education includes provisions for a nationwide Parkinson's disease data system and a Parkinson's Disease Information Clearinghouse. The Udall Act must be fully funded by Congress in order for these facilities to be implemented. An information system currently exists for cancer data, called SEER - the Surveillance, Epidemiology and End Results Program. It is run by the National Cancer Institute and collects "data on a routine basis from designated population-based cancer registries in various areas of the country. Trends in cancer incidence, mortality and patient survival in the U.S., as well as many other studies, are derived from this data bank" (31). A system such as this one could be created for Parkinson's Disease. References 1. Office of Scientific and Health Reports. "Parkinson's Disease: Hope Through Research," NIH Publication No. 94-139. Bethesda, Md.: National Institute of Neurological Disorders and Stroke. 1994. Also Internet URL: http://www.ninds.nih.gov/healinfo/disorder/parkinso/pdhtr.htm 2. Fact Sheet: Parkinson's Disease. San Francisco: Family Caregiver Clearinghouse, 1996. 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