Search

Seizure documentation is an essential component of epilepsy management. Not all persons with epilepsy choose to document their seizures, but many view the practice as essential to managing their disease. While seizure documentation is a valuable aspect of patient care, clinicians and patients must remain aware that seizure underreport and overreport commonly occur due to lack of seizure awareness. Additionally, in rare cases, persons with epilepsy may intentionally conceal their seizures from clinicians. The continued development of electronic seizure diaries and epilepsy self-management software provides patients with new and expanding options for seizure documentation and disease management. In order for these tools to be utilized most effectively, patient input must be central to their development. Given the limitations of seizure documentation, the development of accurate, non-invasive seizure detection devices is crucial for accurate seizure monitoring., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Jonathan Goldstein has no competing interests to report. Churl-Su Kwon has no competing interests to report. Michael Harmon has no competing interests to report. Alison Kukla has no competing interests to report. Jeffrey Buchhalter receives compensation for consulting work from Biocodex, the Epilepsy Foundation, Epilepsy Study Consortium, Epilog Care, Neurocrine Biosciences and UCB Pharma. Susan T. Herman receives grant support from the Epilepsy Foundation, NIH, Marinus Pharmaceuticals, and CREmedical, and compensation for consulting from BioSerenity. Susan McCallum has no competing interests to report. Lisa Raman has no competing interests to report. Brandy E. Fureman receives salary support from the Epilepsy Foundation, and grant funding from UCB Biopharma (Human Epilepsy Project 2), PCORI and the James M. Anderson Center for Health Systems Excellence (RI-PCC-2017 (sub: 03699), the CDC (1NU58DP006256-02-00), the National Association of Epilepsy Centers, and has no other conflicts of interest. Nathalie Jetté receives grant funding paid to her institution for grants unrelated to this work from NINDS (NIH U24NS107201, NIH IU54NS100064). She also receives an honorarium for her work as an Associate Editor of Epilepsia., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Objective: The objective of the study was to identify functioning and quality-of-life (QOL) patient-reported outcome measurements (PROMs) feasible for use in the waiting room of adult epilepsy clinics., Material and Methods: We searched PubMed and Web of Science for articles on in English, Spanish, Portuguese, Italian, and French published by the end of February 15th, 2019. We screened retrieved titles and abstracts looking for publications that reported the use of PROMs to measure functioning and QOL in epilepsy. The authors, clinical experts, and patient advocates from the Epilepsy Foundation of America conceptualized a set of desirable feasibility attributes for PROMs implementation in the waiting room of adult epilepsy clinics. These attributes included brief time for completion (i.e., ≤3 min), free cost, coverage of four minimum QOL domains and respective facets, and good evidence of psychometric properties. We defined QOL domains according to the World Health Organization's classification and created psychometric appraisal criteria based on the Food and Drug Administration's (FDA) Guidance., Results: Eighteen candidate instruments were identified and compared with respect to desirable attributes for use in adult epilepsy clinics. We found that the Quality-of-life in epilepsy (QOLIE)-10 and Patient-Reported Outcome Measurement Information System-10 (PROMIS-10) were the most feasible PROMs for implementation in adult epilepsy clinics based on our criteria. The QOLIE-10 and PROMIS-10 still lack ideal evidence of responsiveness in people with epilepsy., Conclusion: This is the first systematic review that aimed to assess feasibility properties of available functioning and QOL PROMs. The QOLIE-10 and PROMIS-10 are potentially feasible instruments for implementation in the waiting room of adult epilepsy clinics. Further studies assessing the responsiveness of these PROMs are needed and will contribute to the selection of the most appropriate instrument for longitudinal use in adult epilepsy clinical practice., (Copyright © 2019 Elsevier Inc. All rights reserved.)