Clinical StudiesA survey of 2,851 patients with hemochromatosis:: Symptoms and response to treatment☆
Section snippets
Methods
Between September 1996 and September 1997 we mailed a questionnaire to all the people with hemochromatosis we could locate and invited them to participate in our survey. The questionnaire was designed after conducting a literature review and receiving suggestions from persons with hemochromatosis in two focus groups. Questionnaires were also field tested before the general dissemination. After approval by the institutional review boards of all participating institutions, the survey was mailed
Results
A total of 3,562 surveys were mailed, and 2,851 patients (80%) completed the questionnaire, including 2,813 patients residing in 20 countries and 38 patients who did not provide their residence. Among those who gave their country of residence, 84% were from the United States, 6% from Australia, 6% from the United Kingdom, and 4% from Canada. The remaining respondents were from 13 other countries.
When asked their racial background, 2,806 respondents (99%) reported that they were white; 27 were
Discussion
The information from this large sample of patients with hemochromatosis offers an encouraging perspective on how hemochromatosis is managed by physicians and on the implications of diagnosis and treatment for patients. Previous anecdotal information suggested a much worse picture. In this study, hemochromatosis was diagnosed in a large proportion of respondents before symptoms occurred, many persons were not adversely affected by diagnosis or treatment, and phlebotomy seemed to provide some
References (26)
- et al.
Practice Guideline Development Task Force of the College of American Pathologistshereditary hemochromatosis
Clin Chim Acta
(1996) - et al.
Long-term survival in patients with hereditary hemochromatosis
Gastroenterology
(1996) - et al.
Prevalence of heterozygotes for hemochromatosis in the white population of the United States
Blood
(1995) - et al.
The relationship between iron overload, clinical symptoms and age in 410 hemochromatosis patients
Hepatology
(1997) - et al.
Long-term survival in patients with hereditary hemochromatosis
Gastroenterology
(1996) Hemochromatosis and dietary iron supplementationimplications from U.S. mortality, morbidity and health survey data
J Am Diet Assoc
(1992)Diabete sucre
Bull Soc Anatom (Paris)
(1871)- von Reckinghausen FD. Taggeblat der (62) Versammiling Deutsch Naturforscher und Atze in Heidelberg. (German)...
- et al.
A novel MHC class like gene is mutated in patients with hereditary haemochromatosis
Nat Genet
(1996) - Cartwright GE. Hemochromatosis. In: Editors. Harrison’s Textbook of Internal Medicine, 7th ed. New York: McGraw Hill,...
Prevalence of hemochromatosis among 11,065 presumably healthy blood donors
NEJM
Screening for hemochromatosis and iron deficiency in employees and primary care patients in Western Germany
Ann Intern Med
Experiences with screening for hemochromatosis in primary care
Ann Intern Med
Cited by (0)
- ☆
Supported by the Centers for Disease Control and Prevention Project Number 1632.