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Outcome measurement in functional neurological disorder: A systematic review and recommendations

  • Susannah Pick
  • , David G. Anderson
  • , Ali A. Asadi-Pooya
  • , Selma Aybek
  • , Gaston Baslet
  • , Bastiaan R. Bloem
  • , Timothy R. Nicholson
  • , Richard J. Brown
  • , Alan J. Carson
  • , Trudie Chalder
  • , Maria Damianova
  • , Anthony S. David
  • , Mark J. Edwards
  • , Steven A. Epstein
  • , Alberto J. Espay
  • , Béatrice Garcin
  • , Laura H. Goldstein
  • , Mark Hallett
  • , Joseph Jankovic
  • , Eileen M. Joyce
  • Richard A. Kanaan, Roxanne C. Keynejad, Kasia Kozlowska, Kathrin Lafaver, W. Curt Lafrance, Anthony E. Lang, Alex Lehn, Sarah Lidstone, Carine W. Maurer, Bridget Mildon, Francesca Morgante, Lorna Myers, Clare Nicholson, Glenn Nielsen, David L. Perez, Stoyan Popkirov, Markus Reuber, Karen S. Rommelfanger, Petra Schwingenshuh, Tereza Serranova, Paul Shotbolt, Glenn T. Stebbins, Jon Stone, Marina A.J. Tijssen, Michele Tinazzi
  • King's College London
  • University of the Witwatersrand
  • Shiraz University of Medical Sciences
  • Thomas Jefferson University
  • University of Bern
  • Harvard University
  • Radboud University Nijmegen
  • University of Manchester
  • NHS Lothian
  • University College London
  • St Georges Hospital Medical School
  • Georgetown University
  • University of Cincinnati
  • Hôpital Avicenne
  • National Institutes of Health
  • Baylor College of Medicine
  • University of Melbourne
  • The Children's Hospital at Westmead
  • Northwestern University
  • Rhode Island Hospital
  • Centre of Excellence on Aging and Chronic Diseases of McGill Integrated University Health Network
  • Mater Neurosciences Centre
  • FND Hope International
  • Northeast Regional Epilepsy Group
  • University College London Hospitals NHS Foundation Trust
  • Ruhr University Bochum
  • University of Sheffield
  • Emory University
  • Medical University of Graz
  • Charles University
  • Rush University Medical Center
  • University of Groningen
  • University of Verona

Research output: Contribution to journalReview articlepeer-review

147 Scopus citations

Abstract

Objectives We aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes. Methods A systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group. Results Five FND-specific measures were identified - three clinician-rated and two patient-rated - but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost-utility (eg, healthcare resource use and quality-adjusted life years). Conclusions There are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population.

Original languageEnglish
Pages (from-to)638-649
Number of pages12
JournalJournal of Neurology Neurosurgery and Psychiatry
Volume91
Issue number6
DOIs
StatePublished - Jun 1 2020

Keywords

  • clinical neurology
  • conversion disorder
  • functional neurological disorder
  • movement disorders
  • neuropsychiatry

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