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Myeloma Patients Europe (MPE), in collaboration with the pharmaceutical company Amgen, launched a survey in 2019 for European myeloma patients to understand their treatment information needs.

The survey was run in 12 European countries: Austria, Finland, France, Germany, Hungary, Israel, Netherlands, Poland, Romania, Sweden, Switzerland and the UK. This survey is now closed in all countries, reaching the target of gathering 1,000 patient responses.

MPE wants to extend a massive thank-you to every patient who participated and to our members for their valuable help in reviewing and disseminating the survey in their country. 

About the survey

The survey asked a range of questions designed to better understand myeloma patient information needs and preferences, particularly focusing on the types of information that are valued by patients to make informed treatment decisions.

It also aimed 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.
Next steps

Now the survey has closed to recruitment in all 12 countries, the analysis of the patient responses will take place over the coming months.

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

It is hoped that the results of the survey will be published at a scientific congress and included in a relevant journal for publication. MPE will keep members, particularly those who participated in the survey, up to date on next steps with the survey analysis and timelines for publication.

In the meantime, if you have any questions or comments, please email morgan@mperuope.org

 

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