Improving comprehension of genetic counseling for hereditary breast and ovarian cancer clients with a visual tool

Abstract

ObjectiveGenetic counseling and testing can be offered to individuals who are at high risk of carrying a breast cancer (BRCA) gene mutation. However, the content of genetic counseling could be difficult to understand due to complex medical information. The aim of this study was to investigate if comprehension can be improved with a new genetic counseling tool (NGCT hereafter; a tool that combines complex medical information with pictures, diagrams and tables) as compared to conventional oral-only genetic counseling (CGC).Methods207 clients attended genetic counseling for hereditary breast and ovarian cancer at the Medical University of Vienna between February 2015 and February 2016. Seventy clients participated in this study and were allocated into two groups: the first 36 participants received conventional (oral only) genetic counseling (CGC) and the following 34 participants received genetic counseling using a new genetic counseling tool (NGCT), which combines complex information with pictures, diagrams and tables. After genetic counseling, all consenting participants were invited to complete a questionnaire with seven questions evaluating their comprehension of the medical information provided.ResultsSocio-demographic backgrounds were comparable in both groups. Correct responses were significantly higher in the NGCT group compared to the CGC group (p = 0.012). NGCT also statistically improves correct response of Q1 (p = 0.03) and Q7 (p = 0.004).ConclusionThe NGCT leads to an overall better understanding of the content of a genetic counseling session than CGC alone.

Knowledge and psychosocial impact of genetic counseling and multigene panel testing among individuals with ovarian cancer

“…In a pilot randomized controlled trial, Vogel and colleagues [36] found that use of a mobile health application significantly improved hereditary cancer knowledge among women with ovarian cancer. Likewise, Tea and colleagues [37] found that the use of a visual tool significantly improved comprehension of cancer genetics information among individuals at high risk for HBOC. Beyond these interventions, development of educational materials that are culturally tailored and appropriate for individuals across the spectrum of literacy and numeracy is warranted.…”

Making BRCA1 genetic test reports easier to understand through user-centered design: A randomized trial

“…This is unsurprising, given that the standard report provided no information on the former issue and only limited information on the latter (mentioning children but not siblings). However, the high proportion who answered these questions incorrectly, combined with existing literature highlighting similar misconceptions among many patients and even some clinicians, 6,39,40 underscores the importance of ensuring that these facts are communicated explicitly. When developing informational materials, Tea et al 40 found that merely mentioning the fact that men could carry BRCA variants was not enough, because this was apparently overlooked or misremembered by participants; the researchers ultimately decided it was necessary to emphasize it in more than one way.…”

Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: a systematic review of patient impact and experience

“…Cluster 1 resources were designed to replace face-to-face genetic counselling pre-test (28, 48,57,62,67,68,69) or to supplement genetic counselling (44,49,51,53,54,60,64,66,70,72,73), which may have been delivered in the mainstream setting by oncology professionals (52,65,71). Cluster 2 resources were exclusively to supplement standard of care genetic counselling post-test for carriers.…”