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Understanding the Patient Perspective of Seizure Severity in Epilepsy: Development of a Conceptual Model

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Abstract

Purpose

For patients with uncontrolled epilepsy, the severity and postictal sequelae of seizures might be more impactful than their frequency. Seizure severity is often assessed using patient-reported outcome (PRO) instruments; however, evidence of content validity for existing instruments is lacking. Our aim was to understand the real-life experiences of patients with uncontrolled epilepsy.

Methods

A preliminary conceptual model was developed. The model was refined through (1) a targeted literature review of qualitative research on seizure severity; (2) interviews with four clinical epilepsy experts to evaluate identified concepts; and (3) qualitative interviews with patients with uncontrolled epilepsy, gathering descriptions of symptoms and impacts of epilepsy, focusing on how patients experience and describe “seizure severity.” Findings were summarized in a final conceptual model of seizure severity in epilepsy.

Results

Twenty-five patients (12 who experienced primary generalized tonic–clonic seizures and 13 who experienced partial-onset seizures) expressed 42 different symptoms and 26 different impacts related to seizures. The final conceptual model contained a wide range of concepts related to seizure frequency, symptoms, and duration.

Conclusion

Our model identified several new concepts that characterize the patient experience of seizure severity. A seizure severity PRO instrument should cover a wide range of seizure symptoms alongside frequency and duration of seizures. This qualitative work reinforces the notion that measuring seizure frequency is insufficient and that seizure severity is important in defining the patient’s experience of epilepsy. This model could be used to assess the content validity of existing PRO instruments, or could support the development of a new one.

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Acknowledgments

The authors wish to acknowledge and thank the epilepsy experts and patients who completed the interviews, and Barbara Pelgrims, Ph.D. (UCB Pharma, Brussels, Belgium), for publication coordination. Editorial assistance was provided by Jennifer Bodkin, Ph.D. (Evidence Scientific Solutions, Horsham, UK), and funded by UCB Pharma. This included formatting of the text and tables, collection of author contribution and conflict of interest statements, and assistance with the online submission process by uploading files.

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Authors and Affiliations

  1. UCB Pharma, 208 Bath Road, Slough, SL1 3WE, UK

    Simon Borghs

  2. Quintiles, Pittsburgh, PA, USA

    Erin L. Tomaszewski

  3. AstraZeneca, Gothenburg, Sweden

    Katarina Halling

  4. Consultant, Châtel-Censoir, France

    Christine de la Loge

Authors
  1. Simon Borghs
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  2. Erin L. Tomaszewski
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  4. Christine de la Loge
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Corresponding author

Correspondence to Simon Borghs.

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Author contributions

All authors contributed to the design of the study. Erin Tomaszewski and Katarina Halling collected the data. Simon Borghs, Erin Tomaszewski, and Katarina Halling analyzed and interpreted the data. All authors contributed to the development and final decision to submit the manuscript, and act as guarantors.

Funding

This study was funded by UCB Pharma.

Conflict of interest

Simon Borghs is an employee of UCB Pharma. Erin Tomaszewski and Katarina Halling were employees of PRO Consulting at the time when this research was conducted. Christine de la Loge was an employee of UCB Pharma at the time when this research was conducted and is currently an independent consultant.

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Borghs, S., Tomaszewski, E.L., Halling, K. et al. Understanding the Patient Perspective of Seizure Severity in Epilepsy: Development of a Conceptual Model. Patient 9, 419–431 (2016). https://doi.org/10.1007/s40271-016-0165-0

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