Info-BC
Research type
Research Study
Full title
Supporting shared decision making in advanced breast cancer: What matters to patients in an era of personalised care (Info-BC)
IRAS ID
257134
Contact name
Peter Hall
Contact email
Sponsor organisation
The University of Edinburgh
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 6 months, 2 days
Research summary
Research Summary
Breast cancer is the most common form of cancer in women in the UK. Metastatic or secondary breast cancer refers to the situation when a cancer which began in or around the breast tissue has spread to another part of the body. Patients with metastatic cancer may undergo a range of systemic anti-cancer therapy (SACT) to control symptoms or extend life. Although a clinical team make recommendations about SACT, a patient's decision to undergo therapy is always a personal one and will depend on their own characteristics and values. The shared decision making process between a patient and their clinical team requires an assessment of the risks from treatment for an individual. There must also be a clear communication of risks and benefits between the patient and their clinical team. The aim of this project is to understand patient and clinician preferences about different treatment options. It will identify the characteristics of treatment (for example specific side-effects) that influence the choice of SACT. It will help to define the best content for developing specific information sources such as patient information documents and decision aids in advanced breast cancer. The project will involve the development of a Discrete Choice Experiment (DCE) through analysis of existing literature and interviews with patients. The DCE will then be piloted and developed into a survey for completion by the general public and members of the healthcare profession.
Summary of Results
We aimed to understand what matters most to patients, healthcare professionals and the general public when deciding systemic anti-cancer treatment (SACT) options for metastatic (secondary breast cancer) to inform the shared decision making process. We also wanted to identify attributes (features) which patients and healthcare professionals value most and which may influence the choice of treatment, or the decision to refuse treatment using available literature, analysis of the Scottish Medicine Consortium (SMC) Patient and Clinician Engagement (PACE) statements and qualitative interviews. A key output was the development of a discrete choice experiment (DCE) to understand how risks and benefits of treatment options are traded.
We found that survival was the most important attribute to the majority of respondents. It should not be assumed that people will trade overall survival over some toxicities, and this is especially relevant when new treatments are associated with significant toxicities but marginal gains in terms of overall survival. Differences were detected between the treatment preferences of people who had experienced cancer and healthcare professionals.
REC name
North of Scotland Research Ethics Committee 1
REC reference
19/NS/0066
Date of REC Opinion
1 May 2019
REC opinion
Further Information Favourable Opinion