Usage and impact of patient-reported outcomes in epilepsy

Kristl Vonck, Arnaud Biraben, Magdalena Bosak, Poul Jørgen Jennum, Vasilios K Kimiskidis, Petr Marusic, James W Mitchell, Lara N Ferreira, Martina Ondrušová, Adrian Pana, Ulf Persson, Tim J von Oertzen, Simona Lattanzi*

*Corresponding author for this work


BACKGROUND: The use of patient-reported outcomes (PRO) in clinical practice is gaining increasing attention. This study aimed to provide a critical assessment of the current state-of-the-art and beliefs about the use of PRO in the management of people with epilepsy across some European countries.

METHODS: Structured interviews were conducted with European experts to collect insights about (I) the personal experience with PRO; (II) the value and impact of PRO in the decision-making process at the national level; and (III) the interest for and use of PRO by national health authorities.

RESULTS: Nine neurologists (Austria, Belgium, Czechia, Denmark, France, Greece, Italy, Poland, and United Kingdom), three health economists (Portugal, Romania, and Sweden), and one epidemiologist (Slovakia) participated. They all stated that PRO are collected at their own countries in the context of clinical trials and/or specific projects. During everyday clinical practice, PRO are collected routinely/almost routinely in Austria and Sweden and only at the discretion of the treating physicians in Czechia, Denmark, France, Greece, and Portugal. There was complete consensus about the favorable impact that the PRO can have in terms of clinical outcomes, healthcare resources utilization, and general patient satisfaction. Only participants from Portugal and Sweden answered that the PRO are perceived as very important by the National Health Authorities of their respective countries.

CONCLUSIONS: Differences exist in attitudes and perspectives about PRO in epilepsy across Europe. An active plan is warranted to harmonize the measurement of PRO and ensure they can be relevant to people with epilepsy and health services.

Original languageEnglish
Article numbere3342
JournalBrain and Behavior
Issue number12
Publication statusPublished - Dec 2023


  • Epilepsy/therapy
  • Europe
  • Humans
  • Italy
  • Patient Reported Outcome Measures
  • Poland


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