MSBC Study
Research type
Research Study
Full title
A national study of the experiences, information needs and attitudes to clinical research of patients living with secondary breast cancer in the UK
IRAS ID
288301
Contact name
Janet Dunn
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Research Summary
Breast cancer remains the most common cancer in the UK with over 55000 cases diagnosed every year. Although survival rates have increased significantly over the last 20 years, 30% of patients still experience recurrent or metastatic disease. It is currently estimated that 36,000 UK women are living with metastatic disease.
Clinical research is key to improving treatments in secondary breast cancer and participation in research is known to be beneficial for individuals. Providing patients with opportunities to take part in clinical research is therefore a priority in “Achieving World-Class Cancer Outcomes: A Strategy For England 2015-2020” (Independent Cancer Taskforce). However, data from the National Cancer Research Institute (NCRI)indicates that, although the number of breast cancer trials increased from 137 to 162 between 2011 and 2018, the total number of patients recruited reduced from 42189 to 12628.
Modern treatments are increasingly targeted to highly defined biological subgroups of patients, reducing the number of patients who will be eligible for individual studies. Furthermore, the greater commercial portfolio and increasing complexity of many trials limits centres which will open to recruitment and be biased to larger academic centres. NCRI data confirms significant variation in the recruitment numbers from region to region. Furthermore, patient representatives within the NCRI Breast Clinical Studies Group have highlighted personal difficulties in both identifying and accessing relevant clinical trials.
This patient initiated project will investigate the experiences of being offered clinical trial recruitment or seeking clinical trial opportunities and identify the barriers affecting recruitment into clinical trials via a comprehensive survey open to all people living with secondary breast cancer. Additional qualitative data will be gathered via telephone interviews to enhance understanding.Summary of Results
Clinical trials (CTs) vital to improve health treatment and care. However, few people with metastatic cancer take part. This UK study, led by a woman living with metastatic breast cancer (MBC), was designed to explore issues people with MBC experience regarding accessing and participating in CTs.The study comprised an online survey and interviews. 768 valid survey responses were received which were supplemented with 21 telephone interviews to investigate issues further.
It was found that:
Fewer than 14% of the survey responders had taken part in CTs but it had been a positive experience for 72% of those that had.
People with MBC want much more information about CTs. Most would prefer to receive this from their consultant but 77% had not.
Consequently, only 39% felt very involved in treatment decisions.
The most common reason cited for wanting to take part in CTs was to access new treatments (96%) although 63% were concerned about potential side effects.
Most respondents were prepared to travel beyond their treating centre for CT opportunities; some would even travel abroad. However, this was described as “another layer of exclusionâ€.
This large, unique, patient-led study informs us that, despite living with significant ill health, people with MBC are keen to be involved in CTs. However, they are thwarted by a lack of information and opportunities. Addressing the issues identified will help to ensure that people have appropriate CT access.REC name
London - Fulham Research Ethics Committee
REC reference
21/LO/0232
Date of REC Opinion
27 Apr 2021
REC opinion
Further Information Favourable Opinion