A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review

Felipe J S Jones; Farrah L Ezzeddine; Susan T Herman; Jeffrey Buchhalter; Brandy Fureman; Lidia M V R Moura

doi:10.1016/j.yebeh.2019.106704

A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review

Epilepsy Behav. 2020 Jan:102:106704. doi: 10.1016/j.yebeh.2019.106704. Epub 2019 Dec 6.

Authors

Felipe J S Jones¹, Farrah L Ezzeddine², Susan T Herman³, Jeffrey Buchhalter⁴, Brandy Fureman⁵, Lidia M V R Moura⁶

Affiliations

¹ Department of Neurology, Massachusetts General Hospital, Wang Ambulatory Care Center, 720, 55 Fruit Street, Boston, MA 02114, United States of America. Electronic address: felipe.jones@mgh.harvard.edu.
² Department of Epidemiology, Harvard T.H Chan School of Public Health, 677 Huntington Avenue, Boston, MA 02115, United States of America. Electronic address: ezzeddine@hsph.harvard.edu.
³ Department of Neurology, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Ave., Boston, MA 02215, United States of America. Electronic address: sherman2@bidmc.harvard.edu.
⁴ Department of Pediatrics, Cumming School of Medicine, University of Calgary, 3330 Hospital Drive NW, Calgary, Alberta, Canada.
⁵ Research and New Therapies, Epilepsy Foundation, 8301 Professional Pl #200, Landover, MD 20785, United States of America. Electronic address: bfureman@efa.org.
⁶ Department of Neurology, Massachusetts General Hospital, Wang Ambulatory Care Center, 720, 55 Fruit Street, Boston, MA 02114, United States of America. Electronic address: lidia.moura@mgh.harvard.edu.

PMID: 31816482
DOI: 10.1016/j.yebeh.2019.106704

Abstract

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.

Keywords: Epilepsy; PROMs; Patient-reported outcomes; QOL; Quality of life.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Adult
Epilepsy*
Humans
Patient Reported Outcome Measures*
Psychometrics* / instrumentation
Psychometrics* / standards
Quality of Life*

Grants and funding

R01 NS047029/NS/NINDS NIH HHS/United States