Bladder Cancer Cos Outcome Set (B-COS): the Patient Perspective

In research, treatments are evaluated on the balance between risks such as side effects, and benefits such as living longer. These risks and benefits are collectively called ‘outcomes'. A Core Outcome Set (COS) is a minimum list of outcomes researchers should use to report their trial results. It means results from different trials can be compared more easily and makes it easier for doctors to explain to patients what the impacts and side effects of different treatments are, including how they affect quality of life, to support decision making. This project aims to get the patient view on what outcomes should be included in a COS.

Background:Systematic reviews of BC trials highlight heterogeneity in what outcomes are reported, and how they are defined/measured. Heterogeneous outcome reporting hinders comparison of results from individual trials and precludes combining them in meta-analyses, making it difficult to produce evidence-based recommendations for clinical guidelines. This affects patients, as it is harder for clinicians to provide clear comparisons between different treatment options and their outcomes, impacting informed decision-making. Furthermore, there isn't impetus for trial teams to include Quality-of-Life (QoL) outcomes in trial designs.

A solution is to develop Core Outcome Sets (COS), an agreed-upon, standardised, minimum set of outcomes that should be reported in all clinical trials [1]. COS development involves patients as key stakeholders, providing their opinion alongside healthcare professionals (HCP), on what outcomes are important. This ensures outcomes relevant to patients, including QoL related outcomes, are incorporated.

This project aims to determine the patient consensus on the list of outcomes that should be included in a BC COS, an essential step in the development of a B-COS relevant and important to patients. This will complement previous work conducted by colleagues and will enable us to proceed to the next step of COS development.

Patient benefit: Involving patients in the development of the B-COS will ensure that outcomes important to patients are collected in future trials and will not only influence the development of future guidelines, but also facilitate patients in the treatment decision-making process.

Project Lead: 

Professor Mieke Van Hemelrijck - Kings College London; Dr Steven Maclennan- Senior Research Fellow University of Aberdeen, B-COS Project Lead; Anna Haire- PhD Student, King's College London.

Read about the other 2024 IOPP grant-awarded projects.