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Prevalence and Burden of Disease in Hemochromatosis: Estimates Derived from Routine Data
Author(s) -
Patch Christine,
Roderick Paul,
Rosenberg William
Publication year - 2006
Publication title -
nursing and health sciences
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.563
H-Index - 47
eISSN - 1442-2018
pISSN - 1441-0745
DOI - 10.1111/j.1442-2018.2006.00272_14.x
Subject(s) - hemochromatosis , hereditary hemochromatosis , medicine , penetrance , pediatrics , disease , population , medical diagnosis , phlebotomy , demography , pathology , environmental health , biochemistry , chemistry , sociology , gene , phenotype
Since the discovery of the common mutation linked to hereditary hemochromatosis there has been a debate about the clinical morbidity associated with this condition. In the UK, Hospital Episode Statistics (HES) data provide information on patient care delivered by all NHS hospitals and trusts in England from 1989. Data were obtained for episodes with hemochromatosis as any diagnosis for six years (1997–2003). Descriptive analyzes of the data were performed. Using estimates derived from the data and mortality statistics a life table approach estimated the probability by age of not having a first episode of care related to hemochromatosis in homozygotes (as a proxy for penetrance). The number of patients with hemochromatosis increased with more males than females. The average age for males was 55, for females 57. Patients are still presenting with other diagnoses associated with hemochromatosis. The lifetime estimates from the life table were 9% of the male population of homozygotes and 4% of the female would have an episode of care related to hemochromatosis. An increasing number of patients are being treated for hemochromatosis although the total numbers remains small. Patients are still presenting with preventable complications suggesting that there remains scope for improvements in case detection strategies.