Abstract
Patients with a lower educational or a migrant background seem to have poorer access to breast cancer genetic counseling and testing. Referral is not always adequately discussed with these groups of patients, and limited health literacy as well as cultural differences seem to play a role. Ineffective communication is recognized
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as one of the contributing factors to differences in access to healthcare and to health disparities in general. Although the exact relationship between limited health literacy and access to care in general remains unclear, in the context of genetics, provider recommendation seems important. Lack of physician recommendation is the primary reason many eligible breast cancer patients remain untested.
The general aim of the research project described in this thesis was to develop, implement and evaluate an intervention to reduce disparities in referral to breast cancer genetic counseling and testing. We assessed educational level and migrant status of counselees referred to cancer genetic counseling and developed a health literacy training program and a plain-language guide to communicate effectively about breast cancer genetic testing. We assessed the training program on perceived applicability and usefulness. Further on we evaluated the effect of the training program on awareness, knowledge and self-efficacy of healthcare professionals and on the referral rate of patients with limited health literacy or a migrant background. In the development of the plain-language guide we worked together with healthcare professionals, breast cancer patients with limited health literacy and low literate individuals. The result is a plain-language guide for healthcare professionals (clinical geneticists, genetic counselors and breast surgeons) with 33 jargon words reformulated in a clear and concise description in plain language. Acceptability and perceived usefulness of the guide among these intended end-users was high. The health literacy training program was evaluated positively by the healthcare professionals. They reported a high degree of acceptance, and the combination of an online module and a group training on location was considered useful and time-efficient.
No significant differences were found in knowledge scores and on awareness of the impact of health literacy on medical communication and the importance to take into account cultural factors when communicating with patients with a migrant background. However, we found a significant increase in self-assessed awareness of the prevalence and impact of limited health literacy and in healthcare professionals’ self-efficacy to recognize limited health literacy and to communicate effectively with patients with limited health literacy or a migrant background.
Unexpectedly, no significant differences were found in educational level, level of health literacy and migrant background of patients referred by healthcare professionals working in hospitals that participated in the training program. However, the mean age of the referred patients referred was significantly lower after the intervention. And that is important, because the risk of hereditary breast cancer is higher for younger women with breast cancer. For a better understanding of the role of health literacy training programs on reducing disparities in access to breast cancer genetic testing, research in a more controlled design, with targeted interventions is needed.
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