Patient preference survey

MPE, in collaboration with the pharmaceutical company Amgen, carried out a survey in 2019-2020 for myeloma patients across 12 countries: Austria, Finland, France, Germany, Hungary, Israel, Netherlands, Poland, Romania, Sweden, Switzerland and the UK. 

The purpose of this survey was to better understand myeloma patient information needs and preferences with an emphasis on what type of information patients deem most relevant to make informed treatment decisions. The results of this survey were presented at ASH 2020.

You can read more information about the ASH 2020 poster on the results of the survey here.

You can view the ASH 2020 presentation here.


Brief overview of the results:

  • Out of the patients who accessed the online survey, 1559 patients met the eligibility criteria and were included in the primary analysis, and 1081 patients completed the full survey.
  • Time since diagnosis was 0-4 years for 53.1% of patients, and ≥16 years for 4.8% of patients. The majority of patients had received 1 line of therapy (40.1%), 20.5% had received 2 lines, 16.0% had received 3 lines and 19.9% had received ≥4 lines of treatment. Last treatment decision was taken <3 months before the survey for 26.1% of patients and >2 years ago for 25.5% of patients.
  • Of the 1112 patients who responded to a question about confidence in their most recent treatment decision, 54.4% reported being very confident, 37.2% reported being somewhat confident. Regarding the level of involvement in the treatment decision, 56.8%, reported feeling ‘very involved’ and 28.4% felt ‘somewhat involved’.
  • Confidence in making an informed treatment decision did not seem to be affected by the number of prior lines of therapy, treating physician, treatment site, or carer involvement.
  • Patients commonly received information about treatment location (84.5%), method of treatment administration (83.0%), treatment frequency (77.7%) and common side effects (72.2%). Information was less commonly received on overall survival benefit (38.4%), how long until myeloma returns (30.9%) and healthcare provider costs (20.0%).
  • Patients considered information relating to treatment effectiveness as the most important type of information, followed by information on treatment safety and tolerability.
  • Receiving the type of information considered most important by patients was significantly associated with increased patient confidence in making informed treatment choices. This suggests that placing a bigger emphasis on communicating treatment effectiveness with patients could increase their confidence in making an informed treatment decision.