Prevalence of Diagnosed/Highly Symptomatic Pachyonychia Congenita (PC) Patients Managed Annually by US Dermatologists-National Real World Occurrence (RWO) Physician Study
Received Date: Jun 05, 2019 / Accepted Date: Jul 19, 2019 / Published Date: Jul 26, 2019
Background: Pachyonychia Congenita (PC) is a chronically debilitating and lifelong genetic disease that typically causes constant, disabling pain. PC appears to be rare, but its prevalence is unsubstantiated by large-scale epidemiologic studies. We conducted the first national prevalence study of a cohort of PC patients, those managed annually by US dermatologists.
Methods: Potential study participants were randomly selected from a national panel of patient-care dermatologists and invited to participate in a brief study of a patient condition that would be disclosed at the study website.
Results: Of the 423 dermatologists contacted, 400 participated, of whom 53% reported managing at least one PC patient during the past 12 months, an annual prevalence of 6.4/10,000 patients (extrapolated to 8,900 to 9,800 nationally), according to the study model.
Conclusions: Study findings indicate PC is likely to be far more prevalent than previous estimates in the literature and that the frequency and level of disability caused by pain-related symptoms may be under-recognized by the treating dermatologist. Additional research is needed to determine the extent to which PC diagnosis has been or could be genetically confirmed.
Keywords: Pachyonychia Congenita (PC); Prevalence; Real World; Epidemiologic survey
Citation: Gallagher JR, Lapidus D, Heap K, Carroll S (2019) Prevalence of Diagnosed/Highly Symptomatic Pachyonychia Congenita (Pc) Patients Managed Annually by US Dermatologists-National Real World Occurrence (RWO) Physician Study . J Dermatol Dis 6: 280.
Copyright: © 2019 Gallagher JR, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
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