Abstract
BackgroundThere is an underuse of genetic testing in breast cancer patients with a lower level of education, limited health literacy or a migrant background. We aimed to study the effect of a health literacy training program for surgical oncologists and specialized nurses on disparities in referral to genetic testing. MethodsWe conducted a multicenter study in a quasi-experimental pre-post (intervention) design. The intervention consisted of an online module and a group training for surgical oncologists and specialized nurses in three regions in the Netherlands. Six months pre- and 12 months post intervention, clinical geneticists completed a checklist with socio-demographic characteristics including the level of health literacy of each referred patient. We conducted univariate and logistic regression analysis to evaluate the effect of the training program on disparities in referral to genetic testing. ResultsIn total, 3179 checklists were completed, of which 1695 were from hospital referrals. No significant differences were found in educational level, level of health literacy and migrant background of patients referred for genetic testing by healthcare professionals working in trained hospitals before (n = 795) and after (n = 409) the intervention. The mean age of patients referred by healthcare professionals from trained hospitals was significantly lower after the intervention (52.0 vs. 49.8, P = 0.003). ConclusionThe results of our study suggest that the health literacy training program did not decrease disparities in referral to genetic testing. Future research in a more controlled design is needed to better understand how socio-demographic factors influence referral to breast cancer genetic testing and what other factors might contribute.
Highlights
Despite guidelines that recommend genetic testing for patients at increased risk of carrying a pathogenic variant in a breast cancer gene (e.g. BRCA1, BRCA2, CHEK2, PALB2, ATM) [1e3] not all eligible patients are referred for genetic testing
We aimed to study the effect of a health literacy training program for surgical oncologists and specialized nurses on disparities in referral to genetic testing
Almost 4% of patients referred by hospitals had low or limited health literacy, and the level of language proficiency was low for 3% of the patients
Summary
Despite guidelines that recommend genetic testing for patients at increased risk of carrying a pathogenic variant in a breast cancer gene (e.g. BRCA1, BRCA2, CHEK2, PALB2, ATM) [1e3] not all eligible patients are referred for genetic testing. There is an underuse of genetic testing in breast cancer patients with a lower level of education, limited health literacy or a migrant background. We aimed to study the effect of a health literacy training program for surgical oncologists and specialized nurses on disparities in referral to genetic testing. Six months pre- and 12 months post intervention, clinical geneticists completed a checklist with socio-demographic characteristics including the level of health literacy of each referred patient. No significant differences were found in educational level, level of health literacy and migrant background of patients referred for genetic testing by healthcare professionals working in trained hospitals before (n 1⁄4 795) and after (n 1⁄4 409) the intervention. Conclusion: The results of our study suggest that the health literacy training program did not decrease disparities in referral to genetic testing. Future research in a more controlled design is needed to better understand how socio-demographic factors influence referral to breast cancer genetic testing and what other factors might contribute
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