Development of a rapid screener to elicit patient preferences for antiseizure medication discontinuation

Samuel W Terman; Jordan M Silva; Max Kuster; Jasper Lee; Amanda Brand; Kara Manuel; Navya Kalia; Micaela Dugan; Marla Reid; Katherine Mortati; Alexandra Tolmasov; Palak S Patel; James F Burke; Arthur C Grant; Susanna S O'Kula; Chloe E Hill

doi:10.1016/j.yebeh.2024.110240

Development of a rapid screener to elicit patient preferences for antiseizure medication discontinuation

Epilepsy Behav. 2024 Dec 31:163:110240. doi: 10.1016/j.yebeh.2024.110240. Online ahead of print.

Authors

Samuel W Terman¹, Jordan M Silva², Max Kuster³, Jasper Lee⁴, Amanda Brand⁵, Kara Manuel⁶, Navya Kalia⁷, Micaela Dugan⁸, Marla Reid⁹, Katherine Mortati¹⁰, Alexandra Tolmasov¹¹, Palak S Patel¹², James F Burke¹³, Arthur C Grant¹⁴, Susanna S O'Kula¹⁵, Chloe E Hill¹⁶

Affiliations

¹ University of Michigan, Department of Neurology, Ann Arbor, MI, USA. Electronic address: [email protected].
² University of Michigan Medical School, Ann Arbor, MI, USA. Electronic address: [email protected].
³ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
⁴ Hackensack Meridian School of Medicine, Edison, NJ, USA. Electronic address: [email protected].
⁵ Hackensack Meridian School of Medicine, Edison, NJ, USA. Electronic address: [email protected].
⁶ University of Michigan Medical School, Ann Arbor, MI, USA. Electronic address: [email protected].
⁷ University of Michigan Medical School, Ann Arbor, MI, USA. Electronic address: [email protected].
⁸ University of Michigan Medical School, Ann Arbor, MI, USA. Electronic address: [email protected].
⁹ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
¹⁰ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
¹¹ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
¹² Hackensack Meridian School of Medicine, Edison, NJ, USA; John F Kennedy University Medical Center Departments of Neurology and Psychiatry, Edison, NJ, USA. Electronic address: [email protected].
¹³ the Ohio State University, Department of Neurology, Columbus, OH, USA. Electronic address: [email protected].
¹⁴ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
¹⁵ State University of New York Downstate Health Sciences, University Department of Neurology, Brooklyn, NY, USA. Electronic address: [email protected].
¹⁶ University of Michigan, Department of Neurology, Ann Arbor, MI, USA. Electronic address: [email protected].

PMID: 39742652
DOI: 10.1016/j.yebeh.2024.110240

Abstract

Objective: While guidelines encourage individualized discussions of the risks and benefits of antiseizure medication (ASM) withdrawal after a period of seizure-freedom, no formal methods exist for assessing patient preferences. We report the initial development of a rapid patient preferences screener.

Methods: We conducted a mixed-methods study of adults who were ≥1 year seizure-free and seen for epilepsy across three institutions. We reviewed existing questionnaires and adapted three questions measuring core constructs influencing ASM decisions - views about ASMs, driving restrictions, and seizures. We added one additional "global" question, for 4 total questions. Participants rated question clarity and utility from 1 (low) to 7 (high).

Results: Of 32 participants, the median patient age was 46 (interquartile range [IQR] 33-56), with a median 3 years since their last seizure (IQR 2-11). Median responses were: 2 (IQR 1-5) for being bothered by ASMs, 2 (IQR 1-6) for feeling that a driving restriction would be disruptive, and 5 (IQR 4-7) for feeling that another seizure would be serious. Respondents tended to disagree that ASMs are doing more harm than good (median 1, IQR 1-2). Participants rated question clarity (median 6, IQR 6-7) and utility (median 7, IQR 6-7) highly.

Conclusions: We report the initial development of a pre-visit rapid screener of patient preferences pertinent to ASM withdrawal in well-controlled epilepsy. Patients endorsed the utility of such a screener and provided guidance to improve items. We hope that this work will ultimately improve shared decision-making.

Keywords: ASM withdrawal; Decision aids; Patient preferences; Patient-centered care.