Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy

Purpose Due to limited health literacy and resulting ineffective communication between healthcare professionals and patients, not all eligible patients are offered breast cancer genetic counseling and testing. We aimed to develop a plain-language guide to increase effective communication about genetic counseling and testing with breast cancer patients with limited health literacy. Methods Together with oncological healthcare professionals, we drafted a list of jargon words frequently used during (breast) cancer genetic counseling. In a focus group interview with breast cancer counselees with limited health literacy, who had received genetic counseling before, we reformulated these words in plain language. Low-literate individuals, who are not familiar with breast cancer care or genetic counseling, reflected on the draft of the guide. Completeness, acceptability, and perceived usability were tested in an online questionnaire among healthcare professionals. Results The result is a plain-language guide for genetic counseling and testing with 33 frequently used jargon words and a reformulation of these words in plain language. Acceptability and perceived usefulness of the guide among healthcare professionals (n= 58) were high. Conclusion The plain-language guide provides opportunities to facilitate communication about genetic counseling and testing with patients with limited health literacy and could enhance opportunities for patients to make informed decisions to participate in genetic testing. As the intention from healthcare professionals to use the plain-language guide is high, implementation of the guide in a real-life setting seems promising.

Automated summary

This study aimed to develop a plain-language guide to facilitate communication about genetic counseling and testing with breast cancer patients with limited health literacy. The guide, including 33 frequently used jargon words reformulated in plain language, was well-received by healthcare professionals and could enhance opportunities for patients to make informed decisions regarding genetic testing. The high intention from healthcare professionals to use the guide suggests promising implementation in real-life settings.