Understanding and information needs of cancer patients regarding treatment‐focused genomic testing: A systematic review

Abstract

Objective: To systematically review literature exploring experiences of cancer patients regarding their understanding of treatment-focused genomic testing as well as their information needs and related themes.Methods: Six databases were searched for the original studies published in English language that explored patients' understanding of the information related to the genomic testing and its implications for treatment of cancer. The Mixed-Method Assessement Tool was used to examine the methodological quality of selected articles.Results: There were 14 studies (5 qualitative and 9 quantitative) that met inclusion and exclusion criteria. The majority of studies revealed that a considerable proportion of cancer patients lacked good undertstanding of treatment-focused genomic testing and wanted to be better informed. Some of the factors associated with poor knowledge about genomic testing were low education, older age, low income, and unemployment.The majority of people with cancer preferred face-to-face communication with their oncologists to discuss and ask questions about genomic testing and treatment. Most also wanted to receive simple, easy to understand written information about treatment-focused genomic testing.Conclusions: Genomic testing and its implications for treatment emerge as an important aspect of health care across different types of cancer. The evidence indicates that cancer patients want to understand and be well informed about treatmentfocused genomic testing in order to be part of decision-making process. Further studies addressing ways to improve cancer patients' understanding and knowledge of genomic testing are needed. K E Y W O R D S cancer, communication, genomic testing, information needs, oncology, personalized cancer treatment, precision oncology, targeted therapy, understanding

A qualitative study of patients with Cancer of Unknown Primary: Perceptions of communication, understanding of diagnosis and genomic testing, and information needs

“…CUP patients had poor understanding of the technical details of genomic testing, which is consistent with several studies in other cancer types 14 . However, most CUP patients had good understanding of the clinical implications of genomic testing, which was the more important for them.…”

“…However, most CUP patients had good understanding of the clinical implications of genomic testing, which was the more important for them. This finding contrasts with a systematic review that indicated only 20%–38% of cancer patients were aware of genomic testing's link with identifying targeted treatment 14 …”

“…Genomic testing may identify multiple types of molecular abnormalities, which can help guide clinical recommendations regarding cancer treatment and diagnosis 13 . While genomic testing holds great potential to improve outcomes for CUP patients, understanding of genomic results could potentially be challenging for many patients and lead to increased confusion, uncertainty, and psychological distress 14,15 …”

Information seeking for coping with cancer: a systematic review

“…Alternatively, the information behaviour of interest can be further limited, e.g. information behaviour regarding the use of complementary and alternative medicine (Stub et al, 2020) or information needs regarding treatment-focussed genomic testing (Wolyniec et al, 2020). However, since the review by Rutten et al (2005), no reviews have focussed on reviewing the studies specifically addressing the use of information seeking by cancer patients as coping.…”

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

“…Over one-third of patients require additional counseling [14]. The review of Wolyniec et al [17]-analyzing quantitative and qualitative studies on knowledge and information regarding genomic testing-found that in some studies, less than half of patients were able to reflect the procedure and contents of molecular genetic testing. Considering their high expectations, especially regarding a potential treatment benefit [12][13][14]18], patients might have difficulties dealing with disappointments.…”