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
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
Background: 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.
Methods: 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.
Findings: 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'.
Interpretation: 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.
Attitudes, Breast cancer, Clinical research, Experience, Metastatic
Stephen, Lesley
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Dunn, Janet
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Balmer, Claire
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Elbeltagi, Nada
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Gasson, Sophie
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Copson, Ellen
a94cdbd6-f6e2-429d-a7c0-462c7da0e92b
Palmieri, Carlo
e6321c8b-c189-4173-ac81-05af5b20c611
20 November 2025
Stephen, Lesley
09234c2e-2ee8-447b-9828-b3c5b0984b8f
Dunn, Janet
73ba3d7f-8148-4828-8b82-57f1399d9e2d
Balmer, Claire
8bcbba84-5172-487c-81b5-9d7e4a313788
Elbeltagi, Nada
d1305394-497c-438c-8564-05899e626312
Gasson, Sophie
7a8097ce-5033-4a4b-a0ad-eacad0b99e95
Copson, Ellen
a94cdbd6-f6e2-429d-a7c0-462c7da0e92b
Palmieri, Carlo
e6321c8b-c189-4173-ac81-05af5b20c611
Stephen, Lesley, Dunn, Janet, Balmer, Claire, Elbeltagi, Nada, Gasson, Sophie, Copson, Ellen and Palmieri, Carlo
(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.
The Breast, 85, [104644].
(doi:10.1016/j.breast.2025.104644).
Abstract
Background: 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.
Methods: 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.
Findings: 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'.
Interpretation: 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.
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Accepted/In Press date: 10 November 2025
e-pub ahead of print date: 12 November 2025
Published date: 20 November 2025
Keywords:
Attitudes, Breast cancer, Clinical research, Experience, Metastatic
Identifiers
Local EPrints ID: 508229
URI: http://eprints.soton.ac.uk/id/eprint/508229
ISSN: 0960-9776
PURE UUID: 5c83abf5-1872-4f96-b374-b1d31aa7db46
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Date deposited: 14 Jan 2026 18:08
Last modified: 14 Jan 2026 18:09
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Contributors
Author:
Lesley Stephen
Author:
Janet Dunn
Author:
Claire Balmer
Author:
Nada Elbeltagi
Author:
Sophie Gasson
Author:
Carlo Palmieri
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