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  • SOC5: What is patients' and important others’ knowledge and understanding of Genetic Test for breast cancer?
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What is patients' and important others’ knowledge and understanding of Genetic Test for breast cancer?

Authors: Pseudo85 Pseudo85, Pseudo84 Pseudo84

Internal reviewers: Eva Kernstock, Alessandra Lo Scalzo, Alexandra Sauer

The domain methodology was used for this question (analysis of selected studies extracted from the basic literature search).

The introduction and diffusion of new prognostic or genetic tests raise the question of the extent to which patients are prepared to participate in informed decision making about their care. It is important to give information to patients, and others who may be affected that is at a low threshold, understandable and evidence based. (National Health and Medical Research Council, 2004)

Oncotype DX

Different studies using patient interviews and questionnaires showed that, given the level of knowledge on genetic tests for cancer, there is room for improvement in the patient information {9}. Healthcare organisations should provide patients with counselling and educational materials to inform them about the potential benefits and harms associated with testing and should discuss whether the test results are likely to change the patient’s decision about therapy. {1}

Knowledge about genomic recurrence-risk testing was also assessed by Richman et al. (2011) and Tzeng et al. (2010) through a questionnaire with a 13-item scale mailed to 78 women, treated for early stage, oestrogen receptor-positive breast cancer with 0–3 positive lymph nodes, whose medical records indicated they received Oncotype DX testing earlier. They found low knowledge about many aspects of genomic recurrence risk testing. Most women understood the relationship between the test and chemotherapy (e.g. test aids decisions about chemotherapy) and general test procedures (e.g. it is done after surgery that removes the breast tumour). However, few understood that the test result indicates the likelihood of metastasis assuming additional treatment and that the test does not provide information about familial risk for breast cancer. The authors present the need to continue developing optimal ways to communicate and ensure both perceived and actual comprehension of genomic-based information. Further research is needed on the testing information provided to patients and best practices for patient education. {10, 11}

According to Lillie SE et al. (2008) health literacy may affect women’s capacity to learn about the new genomic tests (Oncotype DX). Women with lower health literacy recalled less of the information provided about the recurrence risk test than women with higher health literacy. Health literacy was not related to the amount of additional information women desired. {5}


Questionnaires and interviews about knowledge and psychological impact of MammaPrint were conducted by Retèl et al. (2009). The results of the knowledge test show that important issues are the predictive accuracy of the test (87% wrong answers) and the consequences of the test (66% wrong answers). The authors stated that the number of patient questionnaires was too small to conduct extensive statistical analysis. {9}

Data on knowledge about genetic tests come from observational studies and surveys, so the reliability of results is not high. The limitations of some studies are reported below.

  • Findings of Richman et al. (2011) and Tzeng et al. (2010) on Oncotype DX are based on self-report and the sample of women enrolled in the study was small.
  • In the observational study by Retèl et al. (2009) the selection of participating hospitals was not at random, but all were probably early adoptors and willing to put effort into the implementation process of MammaPrint. Furthermore, because more questionnaires were returned by concordant low-risk patients, these patients might be more inclined towards responding or the present results might too positive and not representative.
Pseudo85 P, Pseudo84 P Result Card SOC5 In: Pseudo85 P, Pseudo84 P Social aspects In: Jefferson T, Vicari N, Raatz H [eds.]. Prognostic tests for breast cancer recurrence (uPA/PAI-1 [FEMTELLE], MammaPrint, Oncotype DX ) [Core HTA], Agenzia nationale per i servizi sanitari regionali (, Italy ; 2013. [cited 7 February 2023]. Available from: