Abstract P4-07-37: A UK study exploring the attitudes and experience of patients living with metastatic breast cancer with regard to clinical research: A patient advocate-academic collaborative study
Authors: Stephen Lesley , Dunn Janet A. , Balmer Claire , Gasson Sophie J. , Elbeltagi Nada I. , Copson Ellen R. , Palmieri Carlo 
Published: March 2023

Abstract
Background: Clinical trials are key to improving outcomes in metastatic breast cancer (MBC). However, participation is low. Little data exists regarding the attitudes and experiences of patients in relation to clinical research. This study co-developed by a patient living with MBC and researchers aims to explore the experiences and issues related to accessing and participating in clinical research. Material and Method: A mixed methods study consisting of an online survey and qualitative interviews. Participants responded to an online questionnaire which contained closed and open questions, this was live between 17th May 2021 and 30th November 2021. Qualitative interviews from a sample of patients who gave their consent were carried out between 15th August 2021 and 22nd November 2021. Descriptive statistical analysis of the quantitative results from the closed questions and thematic analysis of the qualitative data generated by the open-ended questions and interviews were utilised. Data were extracted on 1st December 2021. Results: 768 eligible responses were received (765 female, 2 male, 1 unknown gender). The greatest proportion of responders were aged 51-60 years (37%), 92% were white (n=708) and 45% employed (n=345). 31% (n=235) were diagnosed with MBC within the last year with 14% (n=107) &gt;5 years ago. 86% (n=660) knew what a clinical trial was. With 23% (n=173) reported an oncologist raising trial participation while 32% (n=243) of patients raising participation with their oncologist. Responses to such inquiries varied from positive and supportive to ‘vague and dismissive’. Accessing new treatments (96%, n=737) and playing a more active role in own health (81%, n=619) would encourage trial participation while being unsure of potential benefits (43%, n=333) was the commonest reason for possible non-participation. Preferred sources of information on trials were a consultant (80%, n=612), nurse (61%, n=467) or trial database (29%, n=220). 36% (n=276) were willing to travel for a study increasing to 56% (n=430) if travel costs were covered, and 43% (n=306) would travel worldwide for a study. £0 to over £100 per month for travel was reported to be affordable. Of the 14% (107 of 768) who had taken part in clinical trials; 72% (n=77) found it a positive experience. Free text responses indicated this was related to additional/longer monitoring. The lack of information relating to trials was a recurring theme. 21 participants were interviewed for the qualitative sub study, with three complementary themes emerging from these namely (1) information about clinical trials/research, (2) barriers to participation and (3) research priorities. Conclusion: This large UK study provides insights into the experiences and attitudes of patients with MBC in relation to clinical research. It demonstrates that patients are keen to be involved in research but face barriers to inclusions. Key messages include the need to develop patient facing trial databases, the importance of clinical staff in the provision of study information and a willingness to travel for a trial but the need for financial support. Addressing the issues identified in this survey are key to ensuring MBC patients not only have opportunities to participate in clinical research but also the ability to take these opportunities up.
Citation Format: Lesley Stephen, Janet A. Dunn, Claire Balmer, Sophie J. Gasson, Nada I. Elbeltagi, Ellen R. Copson, Carlo Palmieri. A UK study exploring the attitudes and experience of patients living with metastatic breast cancer with regard to clinical research: A patient advocate-academic collaborative study [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-07-37.