Outcome measurement in functional neurological disorder: a systematic review and recommendations.
Journal: Journal of neurology, neurosurgery, and psychiatry
Volume: 91
Issue: 6
Year of Publication: 2020
Affiliated Institutions:
Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Donald Gordon Medical Centre, University of the Witwatersrand, Johannesburg, South Africa.
Epilepsy Research Center, Shiraz Medical School, Shiraz University of Medical Sciences, Shiraz, Iran, Islamic Republic of.
Department of Neurology, University Hospital Bern & University of Bern, Bern, Switzerland.
Department of Psychiatry, Brigham & Women's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Department of Neurology, Radboud University Nijmegen Medical Centre, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, Netherlands.
School of Health Sciences, The University of Manchester, Manchester, UK.
Department of Clinical Neurosciences, School of Molecular and Clinical Medicine, Western General Hospital, University of Edinburgh, Edinburgh, UK.
Institute of Mental Health, Division of Psychiatry, Faculty of Brain Sciences, University College London, London, United Kingdom.
Neuroscience Research Centre, Institute of Molecular and Clinical Sciences, St George's University, London, UK.
Department of Psychiatry, Georgetown University, Washington, District of Columbia, USA.
Gardner Family Center for Parkinson's Disease and Movement Disorders, Department of Neurology, University of Cincinnati, Cincinnati, Ohio, USA.
Department of Neurology, Hopital Avicenne, Assistance Publique, Hôpitaux de Paris, Paris, Île-de-France, France.
Human Motor Control Section, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, USA.
Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas, USA.
University College London Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
Department of Psychiatry, Austin Health, University of Melbourne, Melbourne, Victoria, Australia.
Discipline of Psychiatry and Child and Adolescent Health, The Children's Hospital at Westmead, Sydney Medical School, Sydney, New South Wales, Australia.
Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
Departments of Psychiatry and Neurology, Rhode Island Hospital, Brown Medical School, Providence, RI, USA.
Movement Disorders Clinic and the Edmond J. Safra Program in Parkinson's Disease, University Health Network, Toronto, Ontario, Canada.
Mater Neurosciences Centre, Brisbane, Queensland, Australia.
Department of Neurology, Stony Brook University Renaissance School of Medicine, Stony Brook, New York, USA.
FND Hope International, Salmon, Idaho, USA.
Northeast Regional Epilepsy Group, New York, New York, USA.
Therapy Services, The National Hospital for Neurology and Neurosurgery, London, UK.
Departments of Neurology and Psychiatry, Therapy Services, Massachusetts General Hospital, Harvard Medical School, Boston, MA, United States.
Department of Neurology, University Hospital Knappschaftskrankenhaus Bochum, Ruhr University Bochum, Bochum, Germany.
Academic Neurology Unit, University of Sheffield, Royal Hallamshire Hospital, Sheffield, UK.
Departments of Neurology and Psychiatry and Behavioral Sciences, Emory Centre for Ethics, Emory University School of Medicine, Atlanta, Georgia, USA.
Department of Neurology, Medical University of Graz, Graz, Austria.
Department of Neurology and Center of Clinical Neuroscience, Charles University in Prague, Prague, Czech Republic.
Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.
Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands.
Department of Neuroscience, Biomedicine, and Movement, University of Verona, Verona, Italy.
Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK timothy.nicholson@kcl.ac.uk.
Abstract summary
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.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.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).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.
Authors & Co-authors:
Pick Susannah S
Anderson David G DG
Asadi-Pooya Ali A AA
Aybek Selma S
Baslet Gaston G
Bloem Bastiaan R BR
Bradley-Westguard Abigail A
Brown Richard J RJ
Carson Alan J AJ
Chalder Trudie T
Damianova Maria M
David Anthony S AS
Edwards Mark J MJ
Epstein Steven A SA
Espay Alberto J AJ
Garcin Béatrice B
Goldstein Laura H LH
Hallett Mark M
Jankovic Joseph J
Joyce Eileen M EM
Kanaan Richard A RA
Keynejad Roxanne C RC
Kozlowska Kasia K
LaFaver Kathrin K
LaFrance W Curt WC
Lang Anthony E AE
Lehn Alex A
Lidstone Sarah S
Maurer Carine W CW
Mildon Bridget B
Morgante Francesca F
Myers Lorna L
Nicholson Clare C
Nielsen Glenn G
Perez David L DL
Popkirov Stoyan S
Reuber Markus M
Rommelfanger Karen S KS
Schwingenshuh Petra P
Serranova Tereza T
Shotbolt Paul P
Stebbins Glenn T GT
Stone Jon J
Tijssen Marina Aj MA
Tinazzi Michele M
Nicholson Timothy R TR
Study Outcome
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