Health-related quality of life in a racially diverse population screened for hemochromatosis: results from the Hemochromatosis and Iron Overload Screening (HEIRS) study

Wenzel, Lari; Anderson, Roger T.; Tucker, Diane C.; Palla, Shana L.; Thomson, Elizabeth J.; Speechley, Mark; Harrison, Helen; Lewis-Jack, Ometha; Fadojutimi-Akinsiku, Margaret; Eckfeldt, John H.; Reiss, Jacob A.; Rivers, Charles A.; Bookman, Ebony; Snively, Beverly M.; McLaren, Christine E.

doi:10.1097/gim.0b013e3181571f31

Cited by 9 publications

(7 citation statements)

References 16 publications

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“…If results are to be provided by mail, it will be important to find more effective ways to communicate them in print. Wenzel et al (2007) found that measures of psychological well-being decreased after receiving HEIRS study test results among non-Englishspeaking participants. This may have been related to confusion or misunderstandings about test results.…”

Section: Discussionmentioning

confidence: 96%

Screening for Hemochromatosis and Iron Overload: Satisfaction with Results Notification and Understanding of Mailed Results in Unaffected Participants of the HEIRS Study

Harrison

Walker

et al. 2008

Genetic Testing

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Section: Discussionmentioning

confidence: 96%

Screening for Hemochromatosis and Iron Overload: Satisfaction with Results Notification and Understanding of Mailed Results in Unaffected Participants of the HEIRS Study

Harrison

Walker

et al. 2008

Genetic Testing

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“…Although the cause of this association remains poorly understood, the diagnosis of hemochromatosis per se may have potentially adverse consequences on the QoL of subjects. 21 In our cohort 3% of the subjects had abnormal thyroid function test, mainly raised TSH. The thyroid gland would be a potential site of substantial iron deposition, however, thyroid dysfunction is an uncommon occurrence in subjects with HH, and our results are in keeping with the other published data.…”

Section: Discussionmentioning

confidence: 99%

“…Given the overlapping clinical presentations, we hypothesised that the many patients with HH would have concomitant FMS. Moreover, as both these conditions adversely affect QoL, 20,21 an early diagnosis of FMS may help in better management of these subjects.…”

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confidence: 98%

High Prevalence of Fibromyalgia in Patients with HFE-related Hereditary Hemochromatosis

Akheel

Carey

Storan

et al. 2013

Journal of Clinical Gastroenterology

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“…25 One study found some negative emotional responses following the diagnosis of HH by population screening, 26,27 whereas others have not. 10,28,29 Psychological morbidity from the screening process in the current study was assessed by administration of validated questionnaires before and after students were made aware of their genetic status.…”

Section: Discussionmentioning

confidence: 99%

ironXS: high-school screening for hereditary haemochromatosis is acceptable and feasible

et al. 2012

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As the results of the Human Genome Project are realised, screening for genetic mutations that predispose to preventable disease is becoming increasingly possible. How and where such screening should best be offered are critical, unanswered questions. This study aimed to assess the acceptability and feasibility of genetic screening for preventable disease, using the model of hereditary haemochromatosis, in high-school students. Screening was offered for the HFE C282Y substitution to 17 638 students. Questionnaires were administered at the time of screening (Q1) and approximately 1 month after results were communicated (Q2). Outcomes assessed were uptake of screening, change in scores of validated anxiety, affect and health perception scales from Q1 to Q2, knowledge and iron indices in C282Y homozygous individuals. A total of 5757 (32.6%) students had screening and 28 C282Y-homozygous individuals (1 in 206) were identified, and none of the 27 individuals who had iron indices measures had significant iron overload. There was no significant change in measures of anxiety, affect or health perception in C282Y homozygous or non-homozygous individuals. Over 86% of students answered each of five knowledge questions correctly at Q1. Genetic population-based screening for a preventable disease can be offered in schools in a way that results in minimal morbidity for those identified at high risk of disease. The results of this study are not only relevant for haemochromatosis, but for other genetic markers of preventable disease such as those for cardiovascular disease and cancer.

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Health-related quality of life in a racially diverse population screened for hemochromatosis: results from the Hemochromatosis and Iron Overload Screening (HEIRS) study

Cited by 9 publications

References 16 publications

Screening for Hemochromatosis and Iron Overload: Satisfaction with Results Notification and Understanding of Mailed Results in Unaffected Participants of the HEIRS Study

Screening for Hemochromatosis and Iron Overload: Satisfaction with Results Notification and Understanding of Mailed Results in Unaffected Participants of the HEIRS Study

High Prevalence of Fibromyalgia in Patients with HFE-related Hereditary Hemochromatosis

ironXS: high-school screening for hereditary haemochromatosis is acceptable and feasible

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