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What people with myeloma really think about taking part in clinical trials

This project was conducted between 2015-2016.

Aim of project

To find out about myeloma patient perspectives on clinical trials in relation to treatment, information, and support.

Project summary

There is little robust evidence about the motivation for myeloma patients to participate in a clinical trial, or on the barriers they face, and what type of information patients expect throughout and at the end of their participation. Clinical trials are an important treatment option for myeloma patients at all stages of their myeloma and should be discussed with all patients who are likely to meet the eligibility criteria for a clinical trial. Yet a patient experience survey carried out by Myeloma UK in 2013 showed that only 46% of patients had discussed participating in a clinical trial with their doctor.

In this project, patients completed questionnaires and interviews about the following:

  • The motivation for myeloma patients to participate in a clinical trial
  • The barriers to myeloma patients participating in a clinical trial
  • What information patients expect before joining a clinical trial, during a clinical trial, and after their participation is complete

Who was involved with the project

The principal investigator was Dr Ceri Bygrave, Consultant Haematologist at the University Hospital of Wales.

How this project will help Myeloma patients

The information gathered from this project will be used to inform future myeloma based clinical trial protocols to enable them to be more patient friendly. If more participants are attracted to trials then more evidence can be gathered to move the field of myeloma forward and improve patient outcomes.

Acknowledgements and funding

The research was supported by a Myeloma UK Health Services Research Grant.

Outputs

You can read the final project report here.