Shaheen Nicholas J, Lawrence Laura B, Bacon Bruce R, Barton James C, Barton Nancy H, Galanko Joseph, Martin Christopher F, Burnett Charles K, Sandler Robert S
Center for Gastrointestinal Biology and Disease, and the Division of Digestive Diseases and Nutrition, University of North Carolina, Chapel Hill, North Carolina 27599, USA.
Am J Gastroenterol. 2003 May;98(5):1175-80. doi: 10.1111/j.1572-0241.2003.07405.x.
Asymptomatic individuals with hereditary hemochromatosis (HH) may experience difficulties in obtaining employment or insurance, despite their good health. The extent to which these difficulties occur is unclear. The aim of this study was to assess the insurance, employment, and psychosocial consequences of a diagnosis of HH in subjects with no end organ damage.
In three outpatient clinics specializing in the treatment of HH, we performed a survey of individuals diagnosed with HH who were without end organ damage secondary to iron overload, along with their unaffected siblings. A review of the medical records of subjects with HH was performed. Main outcomes were attaining and keeping employment; health, disability and life insurance; and scores on the SF-36, a quality of life measure, and the SCL-90-R, a measure of psychological well-being.
Of 130 eligible subjects with HH, 126 (97%) responded. Of the 55 eligible controls, 46 (84%) responded. Of the 126 subjects with HH, 25 (20%) described 28 incidents of insurance denial or increased premium rates, which they attributed to their diagnosis HH. Of the 28 incidents, 16 (57%) involved life insurance, eight (29%) involved health insurance, and four (14%) involved disability insurance. One subject reported an employment refusal. Five of the 25 subjects (20%) reporting insurance denial or increased premiums had significant comorbid conditions. One of 46 sibling controls (2%) reported an increased rate for life insurance (p = 0.003). No differences were noted in either the SF-36 or the SCL-90-R scores between subjects with HH and unaffected siblings. Overall rates of active health, disability, and life insurance were similar between the groups.
Insurance denial and increased premium rates are reported commonly among individuals with HH without end organ damage. However, the overall proportion of those with active insurance, the quality of life, and the psychological well-being of these subjects were similar to those of unaffected siblings.
遗传性血色素沉着症（HH）的无症状个体尽管身体健康，但在获得就业或保险方面可能会遇到困难。这些困难出现的程度尚不清楚。本研究的目的是评估在无终末器官损害的受试者中，HH诊断对保险、就业及心理社会方面的影响。
在三家专门治疗HH的门诊诊所，我们对诊断为HH且无铁过载继发终末器官损害的个体及其未受影响的兄弟姐妹进行了一项调查。对HH受试者的病历进行了回顾。主要结果包括获得并维持就业；健康保险、残疾保险和人寿保险；以及SF-36（一种生活质量测量工具）和SCL-90-R（一种心理健康测量工具）的得分。
在130名符合条件的HH受试者中，126名（97%）做出了回应。在55名符合条件的对照者中，46名（84%）做出了回应。在126名HH受试者中，25名（20%）描述了28起保险被拒或保费增加的事件，他们将其归因于HH诊断。在这28起事件中，16起（57%）涉及人寿保险，8起（29%）涉及健康保险，4起（14%）涉及残疾保险。一名受试者报告就业被拒。在报告保险被拒或保费增加的25名受试者中，5名（20%）有严重的合并症。46名兄弟姐妹对照者中有1名（2%）报告人寿保险费率增加（p = 0.003）。HH受试者和未受影响的兄弟姐妹在SF-36或SCL-90-R得分上均未发现差异。两组之间的健康保险、残疾保险和人寿保险的总体参保率相似。
在无终末器官损害的HH个体中，保险被拒和保费增加的情况较为常见。然而，这些受试者的总体参保比例、生活质量和心理健康状况与未受影响的兄弟姐妹相似。
