Metastatic and Secondary Breast Cancer (MSBC) Survey
In January 2021 Make 2nds Count awarded a grant to Professor Janet Dunn, Head of Cancer Trials at Warwick Clinical Trials Unit within Warwick Medical School. With this funding Prof Dunn and her team, in collaboration with Make 2nds Count, University of Liverpool, University of Southampton and the Clatterbridge Cancer Centre, designed and delivered a large scale survey of UK secondary breast cancer patients.
The MSBC Survey was a patient led study and was developed in collaboration with these academic partners and Lesley Stephen acting as the patient representative. Lesley, who has been living with metastatic breast cancer since 2014 is a patient advocate who campaigns for better patient access to research, treatments and support. She is a Trustee at Make 2nds Count.
The MSBC Survey aimed to investigate the experiences of patients living with secondary breast cancer and if they had been offered clinical trial opportunities, as well as identifying barriers into recruitment. We hope this research will lead to solutions that can help patients access to clinical trials.
Results of the Survey
- The majority of secondary breast cancer patients have never had a conversation with their clinician about clinical trials. Only 23% of oncologists had raised the subject of clinical trials with patients, and only 32% of patients had raised the subject with their clinician themselves.
- 74% had never searched an online clinical trial registry, however 87% would likely use a patient friendly registry specific to secondary breast cancer.
- Early access to new treatments (96%) and helping future patients by taking part in research (93%) were identified as benefits of clinical trials.
- 63% were discouraged by the possible side effects of being on a trial. Many reported that they thought they would be treated as ‘a guinea pig’, that a trial was a last resort, or that they would be given a placebo.
- Many surveyed were open to travel, with 57% of patients willing to travel abroad to take part in a clinical trial.
- Only 39% of patients felt very involved in making decisions about their treatment.
Next Steps for the MSBC Survey
This large UK study has provided insights into the experiences and attitudes of patients with secondary breast cancer in relation to clinical trial research. The MSBC Survey has demonstrated that patients are keen to be involved in research but face barriers to inclusion. Key messages include the need to develop patient friendly 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.
At Make 2nds Count we are determined to address the barriers to clinical trials are patients are facing. Following this research, we launched the UK Clinical Trial Registry, a one-stop shop for trials suitable for secondary breast cancer patients. We pioneered the Patient Trials Advocate service which supports patients interested in finding out more about clinical trials. In future we plan to work together with like-minded organisations to open up the UK cancer clinical trials conversation.