A UK study of the experiences, information needs and attitudes to clinical research among patients living with secondary breast cancer in the UK: A prospective co-developed study.

Stephen, Lesley, Dunn, Janet, Balmer, Claire, Elbeltagi, Nada, Gasson, Sophie, Copson, Ellen and Palmieri, Carlo ORCID: 0000-0001-9496-2718 (2025) A UK study of the experiences, information needs and attitudes to clinical research among patients living with secondary breast cancer in the UK: A prospective co-developed study. Breast (Edinburgh, Scotland), 85. 104644-. ISSN 0960-9776, 1532-3080

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Abstract

<h4>Background</h4>Clinical research is key to improving the outcomes of patients with metastatic breast cancer (MBC). However, participation is low, with little data on patients' attitudes and experiences of clinical research. This study aimed to explore the experience and attitude of patients in accessing and participating in clinical research in the UK.<h4>Methods</h4>An online survey, available between May and November 2021, was open to people living with MBC in the UK; this was complemented with by qualitative interviews.<h4>Findings</h4>768 responses were received (766 female, 2 male); median age was 51-60 years with 235 (31 %) having de novo disease. 660 (86 %) respondents were confident in their understanding of clinical research. Discussion of participation in research with an oncologist was reported by 173 (23 %) respondents. Accessing new treatments was the most common reason for study participants wanting to take part in research, 737 (96 %). Of the 107 (14 %) respondents who had taken part in clinical trials, 77 (72 %) reported a positive experience. 276 (36 %) would consider travelling to participate in research and 430 (56 %) would be more likely to travel if expenses were met. Themes emerging from the qualitative interviews include 'lack of information', 'barriers to participation' and 'participants research priorities'.<h4>Interpretation</h4>This is the largest UK prospective study in regards to the views of MBC patients towards research. It demonstrates keenness to be involved in research, but participants face barriers as well as a lack of opportunity for participation. Key messages include importance of clinical staff in providing research information, need to develop patient accessible information, and to support travel costs. Improvements within the UK health care system are necessary to enable MBC patients to have equitable access to clinical research.

Item Type:	Article
Uncontrolled Keywords:	Attitudes, Breast cancer, Clinical research, Experience, Metastatic
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Systems, Molec & Integrative Biology Faculty of Health & Life Sciences > Inst. Systems, Molec & Integrative Biology > Inst. Systems, Molec & Integrative Biology (T&R Staff) Faculty of Health & Life Sciences > Inst. Systems, Molec & Integrative Biology > Molecular & Clinical Cancer Medicine
Depositing User:	Symplectic Admin
Date Deposited:	05 Dec 2025 11:27
Last Modified:	05 Dec 2025 11:27
DOI:	10.1016/j.breast.2025.104644
Open Access URL:	https://doi.org/10.1016/j.breast.2025.104644
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3195880
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