Jacobs, Christine June; (2018) Communication about genetic testing and hereditary cancer management with breast and ovarian cancer patients. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: Women with breast or ovarian cancer (patients) are increasingly offered genetic testing shortly after diagnosis to guide management and identify future cancer risks. As a result, new approaches to communication about hereditary cancer are needed to inform decision-making amongst patients and their relatives. Aims: This thesis aimed to investigate expert opinion and guideline recommendations about the communication needs of patients undergoing genetic testing, the information communicated by genetics health professionals and recalled by patients and their relatives and the experience of patients with newly diagnosed breast cancer who undergo genetic testing. Methods: A scoping review and five studies were conducted using UK data from patients and health professionals: an observational study, a Delphi survey, a content analysis, a document analysis and mixed methods matrix and a qualitative study. Results: Accuracy of information recall was low amongst patients and relatives following genetic counselling, especially about hereditary cancer management. Expert health professionals and service users agreed on the key messages required by patients to inform decision-making for themselves and their relatives. However, during genetic counselling, half of the key messages were communicated to patients and fewer key messages were communicated about hereditary cancer management than genetic testing. Recommended information to communicate to patients was identified from international genetics guidelines. Recommendations about hereditary cancer management were infrequently reflected in expert opinion, communicated by genetics health professionals or recalled by patients. Newly diagnosed patients experienced growing uncertainty and concern about inheritance and surgical decision-making, especially when their genetic test result was unexpected. Conclusions: Patients received insufficient information to understand their future cancer risks and make informed decisions about managing hereditary cancer. Steps are needed to improve information provision, especially when results are unexpected. These findings can help guide refinements to communication as genetic testing is integrated into mainstream oncology.

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