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. 2023 Dec;13(12):e3342.
doi: 10.1002/brb3.3342. Epub 2023 Nov 23.

Usage and impact of patient-reported outcomes in epilepsy

Kristl Vonck  1 , Arnaud Biraben  2 , Magdalena Bosak  3 , Poul Jørgen Jennum  4 , Vasilios K Kimiskidis  5 , Petr Marusic  6 , James W Mitchell  7 , Lara N Ferreira  8   9   10 , Martina Ondrušová  11   12 , Adrian Pana  13 , Ulf Persson  14 , Tim J von Oertzen  15 , Simona Lattanzi  16
Affiliations

Usage and impact of patient-reported outcomes in epilepsy

Kristl Vonck et al. Brain Behav. 2023 Dec.

Abstract

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.

Keywords: economics; epilepsy; patient-reported outcomes; seizure.

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Conflict of interest statement

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.

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