Two Registry Studies Are Published
Two IH Registry Studies Published in Obesity Review & Journal of Women's Health: Total Economic Costs of IIH in US Exceeded $444 Million in 2007
October 27, 2010—Two IH Registry studies, examining different aspects of IH, have recently been published in two major medical journals, Obesity Review and the Journal of Women’s Health. This marks the first time that research studies have been published in the medical literature from IH Registry projects. Both studies represent significant steps forward in understanding the impact of chronic idiopathic IH on patients, families and society.
The first study (epublished in September 2010 by Obesity Review), “Idiopathic intracranial hypertension in the USA: the role of obesity in establishing prevalence and healthcare costs” examined the health economics of idiopathic IH (IIH). The study documents, for the first time, the extraordinary costs of taking care of idiopathic IH patients, who have been incorrectly thought to have an insignificant and self-limiting illness. Using Registry data, it determined the total economics costs of IIH in the United States for one year, which included direct (hospitalizations, doctor visits, treatment etc.) and indirect costs (missed work, loss of employment, loss of insurance, etc.), which exceeded $444 million in 2007.
The study also establishes a prevalence rate in the US for idiopathic IH (IIH): in 2007, approximately 25,000 people were living with idiopathic IH. In addition, IIH patients were found to have an exceptionally high rate of hospital admission (38 %), a partial reflection of unsatisfactory treatment options. Total hospital costs per IIH admission in 2007 were also four times greater than for a population-based per person admission. The study’s abstract is available through PubMed at: http://www.ncbi.nlm.nih.gov/pubmed/20804521
The second study, ““Weight and visual field deficits in women with idiopathic intracranial hypertension” was published in the October 2010 issue of the Journal of Women’s Health. The study investigated 159 women with IIH, enrolled in the IH Registry, to see whether a true association exists between weight gain in the year before diagnosis and the presence of visual field deficits, which previous research has suggested. A review of this study can be found on our home page.
This particular project began as a Master of Public Health (MPH) thesis of an Oregon Health & Science University (OHSU) researcher, Maureen Baldwin, M.D., who worked at the Registry under the auspices of a special program designed to cultivate future IH researchers and give OHSU MPH students a hands-on opportunity to be involved in innovative, new IH research.
There are currently eight research projects underway at the IH Registry, including projects investigating shunt failure, Diamox (acetazolamide) use in pregnant women, genetics, new diagnostic criteria for IIH and other areas of study. The IH Registry, a joint project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University, has a current enrollment of more than 1500 patients from 24 countries. It is the only chronic IH patient registry of its kind in the world.