Insurance, employment, and psychosocial consequences of a diagnosis of hereditary hemochromatosis in subjects without end organ damage

American Journal of Gastroenterology

Volumn 98, Issue 5, 2003, Pages 1175-1180

  Shaheen, Nicholas J ^a   Lawrence, Laura B ^b   Bacon, Bruce R ^b   Barton, James C ^b   Barton, Nancy H ^b   Galanko, Joseph ^b   Martin, Christopher F ^b   Burnett, Charles K ^b   Sandler, Robert S ^b  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

^b NONE

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CLINICAL FEATURE; COMORBIDITY; CONTROLLED STUDY; DISABILITY; EMPLOYMENT; FEMALE; HEALTH INSURANCE; HEALTH SURVEY; HEMOCHROMATOSIS; HUMAN; IRON OVERLOAD; MAJOR CLINICAL STUDY; MALE; OUTPATIENT; PRIORITY JOURNAL; QUALITY OF LIFE; SIBLING; SOCIAL PSYCHOLOGY; WELLBEING;

EID: 0038070367     PISSN: 00029270     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1572-0241.2003.07405.x     Document Type: Article

References (22)

1. Grody WW, Dunkel-Schetter C, Tatsugawa ZH, et al. PCR-based screening for cystic fibrosis carrier mutations in an ethnically diverse pregnant population. Am J Hum Genet 1997;60:935-47.
2. Centers for Disease Control and Prevention. Mortality among children with sickle cell disease identified by newborn screening during 1990-1994 - California, Illinois, and New York. JAMA 1998;279:1059-60.
3. Bassett ML, Leggett BA, Halliday JW, et al. Analysis of the cost of population screening for haemochromatosis using biochemical and genetic markers. J Hepatol 1997;27:517-24.
4. Phatak PD, Sham RL, Raubertas RF, et al. Prevalence of hereditary hemochromatosis in 16031 primary care patients. Ann Intern Med 1998;129:954-61.
5. Natowicz MR, Alper JK, Alper JS. Genetic discrimination and the law. Am J Hum Genet 1992;50:465-75.
6. Billings PR, Kohn MA, de Cuevas M, et al. Discrimination as a consequence of genetic testing. Am J Hum Genet 1992;50:476-82.
7. Burke W, Thomson E, Khoury MJ, et al. Hereditary hemochromatosis: Gene discovery and its implications for population-based screening. JAMA 1998;280:172-8.
8. Niederau C, Niederau CM, Lange S, et al. Screening for hemochromatosis and iron deficiency in employees and primary care patients in western Germany. Ann Intern Med 1998;128:337-45.
9. Adams PC. Population screening for haemochromatosis. Gut 2000;46:301-3.
10. Adams PC, Gregor JC, Kertesz AE, Valberg LS. Screening blood donors for hereditary hemochromatosis: Decision analysis model based on a 30-year database. Gastroenterology 1995;109:177-88.
11. Bacon BR, Sadiq SA. Hereditary hemochromatosis: Presentation and diagnosis in the 1990s. Am J Gastroenterol 1997;92:784-9.
12. Feder JN, Gnirke A, Thomas W, et al. A novel MHC class I-like gene is mutated in patients with hereditary haemochromatosis. Nat Genet 1996;13:399-408.
13. Niederau C, Fischer R, Sonnenberg A, et al. Survival and causes of death in cirrhotic and in noncirrhotic patients with primary hemochromatosis. N Engl J Med 1985;313:1256-62.
14. Niederau C, Fischer R, Purschel A, et al. Long-term survival in patients with hereditary hemochromatosis. Gastroenterology 1996;110:1107-19.
15. Harris MI, Eastman RC, Cowie CC, et al. Comparison of diabetes diagnostic categories in the U.S. population according to the 1997 American Diabetes Association and 1980-1985 World Health Organization diagnostic criteria. Diabetes Care 1997;20:1859-62.
16. McHorney CA, Ware JE Jr, Lu JF, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994;32:40-66.
17. Derogatis LR, Rickels K, Rock AF. The SCL-90 and the MMPI: A step in the validation of a new self-report scale. Br J Psychiatry 1976;128:280-9.
18. Alper JS, Geller LN, Barash CI, et al. Genetic discrimination and screening for hemochromatosis. J Public Health Policy 1994;15:345-58.
19. Hudson KL, Rothenberg KH, Andrews LB, et al. Genetic discrimination and health insurance: An urgent need for reform. Science 1995;270:391-3.
20. McDonnell SM, Preston BL, Jewell SA, et al. A survey of 2,851 patients with hemochromatosis: Symptoms and response to treatment. Am J Med 1999;106:619-24.
21. Beutler E, Felitti VJ, Koziol JA, et al. Penetrance of 845G→A (C282Y) HFE hereditary haemochromatosis mutation in the USA. Lancet 2002;359:211-8.
22. Fletcher LM, Dixon JL, Purdie DM, et al. Excess alcohol greatly increases the prevalence of cirrhosis in hereditary hemochromatosis. Gastroenterology 2002;122:281-9.