Cancer Patient Experiences of Molecular Screening for Cancer Treatment as part of MoST-NZ

Abstract

Introduction: The past two decades have seen significant advances in molecular screening technologies, which led to the identification of the molecular mechanisms which lead to cancer. Subsequently, the emerging information has prompted the development of many new targeted cancer therapies. The MoST program employs a novel design whereby a molecular screening program identifies molecular changes of therapeutic relevance. These results are then linked to a clinical trial based on the biomarkers identified in their testing. This thesis investigates the understandings, attitudes, and experiences of cancer patients undergoing molecular screening to identify treatments. These patients are referred by their oncologists for screening as a result of either limited treatment options or unmet clinical needs. A review of the existing literature identified key dimensions which informed participants' understandings, attitudes, and experiences of molecular screening. Methods: A mixed-methods study, guided by a pragmatic methodology, was conducted to explore MoST-NZ participants' understanding, attitudes and experiences of molecular screening to identify potential treatment options. Data was collected through 39 pre-test surveys, semi-structured interviews and 15 post-results surveys. Quantitative analysis was conducted using descriptive analysis, and a thematic analysis was conducted on qualitative data to identify the emerging themes from participants' experiences. Results: Overall, the participants were satisfied with their experience of molecular screening. Identifying treatment options was the primary motivation for oncologists and patients to undergo molecular screening. Taking part in cancer research as a means to further the body of knowledge for cancer research was also cited as important to participants. Participants understood the potential outcomes, one of which was incidental findings of familial risk, and had a good understanding and realistic expectations for their screening results. The resulting incidental findings were also considered beneficial. The participants in the study sample had relatively high knowledge and understanding of molecular screening. However, there were significant misunderstandings of results by patients who incorrectly identified whether they had an actionable outcome or not. Conclusion: The novel design of the Most-NZ study is the start of a new era for cancer treatment in New Zealand. However, the inaccuracies of the screening results reported by participants in this study indicate a disconnect between the dissemination of results and the patient's misunderstanding of these. While patients were overall acceptable to receive results through telehealth, the provision of results face-to-face with participants may limit these misunderstandings. Further research is also needed to determine the best method to ensure that the clinical practice of molecular screening does not perpetuate disparities in cancer outcomes for participants.