Abstract
PurposeDue 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.MethodsTogether 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.ResultsThe 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.ConclusionThe 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.
Highlights
It is important that women at risk of carrying a mutation in a breast cancer gene are offered breast cancer genetic testing
Patients were asked to reflect on jargon words used during routine breast cancer genetic counseling
We rephrased difficult words concerning genetic counseling and testing in plain language until the participants were satisfied with the final formulation
Summary
It is important that women at risk of carrying a mutation in a breast cancer gene are offered breast cancer genetic testing. Due to limited health literacy and resulting ineffective communication between healthcare professionals and patients, not all eligible patients are offered genetic counseling and testing [3,4,5,6,7,8,9]. Patients' limited health literacy and their lack of experience with the healthcare system were found to be barriers, making it difficult for patients to actively engage in taking healthcare decisions [10, 11] and is associated with lower genomic related knowledge [12, 13]. Given that in the Netherlands over 36% of Dutch adults have low or limited health literacy [14], a sizeable proportion of patients lack adequate understanding of medical terms.
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