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

J A M van der Giessen 1, M G E M Ausems 2, E van Riel 2, A de Jong 3, M P Fransen 4, S van Dulmen 5 6 7

Affiliations

PMID: 33001269
DOI: 10.1007/s00520-020-05800-7

Abstract

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.

Keywords: Access to care; Genetic counseling and testing; Genetic literacy; Health literacy; Plain language.