An e-Delphi approach to develop a patient-reported outcome measure to assess functional/dissociative seizures...

Area of Science:

• Neurology
• Psychiatry
• Patient-Reported Outcomes

Background:

• Functional/dissociative seizures (FDS) represent a significant clinical challenge due to the absence of validated severity measures.
• Developing a reliable FDS severity scale is crucial for both clinical management and research advancement.

Purpose of the Study:

• To achieve consensus on items for a patient-reported outcome measure assessing FDS severity.
• To develop a condition-specific tool for evaluating the impact of FDS.

Main Methods:

• A three-round electronic-Delphi survey was employed.
• Participants included individuals with FDS, healthcare professionals, researchers, and caregivers.
• Iterative development of survey tasks based on participant feedback ensured robust consensus building.

Main Results:

• A total of 90 participants initiated the study, with 55 completing round three.
• 136 candidate items were evaluated, resulting in a final measure with 29 severity items, 6 frequency/duration items, and a symptom checklist.
• 90% of participants in the final round expressed satisfaction with the proposed FDS severity measure.

Conclusions:

• Consensus was reached on items for an FDS severity scale, despite the condition's inherent variability.
• The developed measure, co-produced by experts and individuals with lived experience, is poised for future validation.
• This new scale holds promise for enhancing clinical practice and research in FDS.