Educational outcomes of a workplace screening program for genetic susceptibility to hemochromatosis

Abstract

Education is an essential component of a genetic screening program. Knowledge outcomes were measured after large-scale workplace education and screening for genetic susceptibility to hereditary hemochromatosis. The aim was to assess knowledge of concepts presented, impact of mode of delivery, and knowledge retention. Education in a group setting was delivered via oral or video presentation and knowledge assessed using self-administered questionnaires at baseline, 1 month, and 12 months. Over 60% of 11 679 participants correctly answered all questions at baseline, scoring higher with clinical concepts (disease etiology and treatment) than genetic concepts (penetrance and genetic heterogeneity). Revising the education program significantly increased correct responses for etiology (p < 0.002), whilst modifying the knowledge assessment tool significantly increased correct responses for etiology (p < 0.001) and gene penetrance (p < 0.001). For three of the four concepts assessed, use of video was as effective as oral presentation for knowledge outcomes. A significantly higher proportion of those at increased risk of disease (n = 44) responded correctly at 12 months than did controls (n = 82; p = 0.011 for etiology, p = 0.002 for treatment and p = 0.003 for penetrance). Hence, genetic screening can be successfully offered in a group workplace setting, with participants remembering clinical concepts better than genetic concepts up to 1 year later.

Results communication and patient education after screening for possible hemochromatosis and iron overload: experience from the HEIRS Study of a large ethnically and linguistically diverse group

“…C282Y homozygotes, who had the benefit of postscreening face-to-face counseling about their results as well as continued interaction with medical professionals as part of surveillance and treatment, best retained knowledge over time. 23 In the HEIRS Study, educational level, race/language, age, and genotype all contributed to the model predicting knowledge about HH/IO. Although the study provided educational materials and counseling in subjects' preferred language, better scores correlated with being English speaking, higher educational attainment, and seeking information about HH/IO.…”

“…The challenges of providing genetics education to culturally and linguistically diverse groups in Australia have also been reported with an emphasis on the need to adjust not only translations of English words, but also diagrams and other teaching aids. 23,27 If broad-based population screening for HH/IO is contemplated, it will be critical to have input from all target groups to find the best strategies for providing pretest education and communicating genetic test results with familial and health implications.…”

Genetic Knowledge within a National Australian Sample: Comparisons with Other Diverse Populations

“…With the exception of Molster et al [13], the bulk of research within Australia has investigated genetic knowledge within clinical groups [20-22]. The genetic literacy of the Australian-wide population, accounting for key demographic variables such as age and gender, has yet to be reported.…”

Australian Study on Public Knowledge of Human Genetics and Health

“…Some of these studies covered principles of inheritance and human genetics in general, while others focused on disease susceptibility and genetic risk for multi-factorial conditions [16,[21][22][23][24][25] . Australian investigators have tended to study genetics knowledge among groups of people who are either at increased risk of developing certain conditions or have attended genetic counseling, education, or other interventions [26][27][28] . From a wider perspective, Biotechnology Australia has funded several national surveys on public awareness and attitudes towards a range of biotechnologies (e.g., medical, industrial, agricultural, food) [29] in a similar manner to the Eurobarometer and other European surveys [30][31][32][33][34] .…”