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Survey for European myeloma patients aims to understand information needs

Research news // 26th June 2019

Myeloma Patients Europe (MPE), an umbrella organisation of myeloma patient groups and associations is running a survey for European myeloma patients to understand their information needs. The survey is supported by the pharmaceutical company Amgen, who worked with MPE to develop the survey.

If you’re a myeloma patient living in the UK, who has received at least one prior treatment or are currently receiving your first treatment, MPE would be very grateful if you would take the time to complete the anonymous survey.

You can find the link to the survey here.

The survey asks patients a range of questions to better understand myeloma patient information needs and preferences. It particularly focuses on the types of information that are valued by patients and help them to make informed treatment decisions.

The survey also aims to understand:

  • Patient involvement in their last treatment decision and the factors that influenced this
  • How information is associated with confidence in treatment decision-making
  • Communication between healthcare professionals and patients on treatment decisions

What will happen to the responses collected?

The results of the survey will be published and will provide valuable insights into the needs of patients for a wide range of stakeholders, including pharmaceutical companies and patient groups, who will use the data to inform their own information provision to patients. MPE, and its members, will also use the results of the survey to inform their advocacy and campaigning strategies, which aim to improve the experience of patients across Europe.

Comparative data

The survey is being translated and run in 12 European countries: Austria, Finland, France, Germany, Hungary, Israel, Netherlands, Poland, Romania, Sweden, Switzerland and the UK.

The survey ultimately aims to get 1,000 myeloma patients across Europe taking part. Running the survey in several countries will enable country specific and comparative analysis of the results, allowing for an understanding of the differences in patient experience in different parts of Europe.

Where can I find further information?

For more information or if you have any questions about the survey, please email Kate Morgan, Policy Manager, Myeloma Patients Europe at morgan@mpeurope.org

MPE and Amgen would like to thank you in advance for completing the survey. Take the survey now.