Usage and impact of patient-reported outcomes in epilepsy

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

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.

OriginalsprogEngelsk
Artikelnummere3342
TidsskriftBrain and Behavior
Vol/bind13
Udgave nummer12
Antal sider8
ISSN2157-9032
DOI
StatusUdgivet - 2023

Bibliografisk note

Funding Information:
Magdalena Bosak received honoraria for publications from Sanofi; honoraria for lectures, travel expenses and conference fees from Sanofi, Adamed, Angelini Pharma, Neuraxpharm, UCB Pharma, and for the participation in advisory meetings from Sanofi and UCB Pharma outside the submitted work. Vasilios K Kimiskidis received grants from UCB Pharma and personal fees from Arriani and UCB Pharma outside the submitted work. Petr Marusic has received honoraria for lectures from Angelini Pharma, Egis, Eisai, and UCB Pharma, and has served on advisory boards for Angelini, Biogen, and UCB Pharma outside the submitted work. James W. Mitchell reported grants from the Association of British Neurologists and Guarantors of Brain Charity, personal fees from the International Consortium for Health Outcomes Measurement and the UNEEG medical, nonfinancial support from UCB Pharma, American Academy of Neurology, Epilepsy Foundation America, and Angelini Pharma outside the submitted work. Tim J von Oertzen has received payment or honoraria for lectures, presentations, or manuscript writing support from Angelini Pharma, Eisai, GW Pharmaceuticals, Jazz Pharma, Livanova, and UCB Pharma and has served on advisory boards for Angelini Pharma, Arvelle Therapeutics, GW Pharmaceuticals, Jazz Pharma, and Zogenix Pharma outside the submitted work. Simona Lattanzi has received speaker's or consultancy fees from Angelini Pharma, Eisai, GW Pharmaceuticals, Medscape, and UCB Pharma and has served on advisory boards for Angelini Pharma, Arvelle Therapeutics, BIAL, Eisai, GW Pharmaceuticals, and Rapport Therapeutics outside the submitted work. All authors reported personal fees from Ethos S.r.l. in compensation of time for the undertaking of the expert interviews.

Publisher Copyright:
© 2023 The Authors. Brain and Behavior published by Wiley Periodicals LLC.

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