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

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...

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Autores principales: Pick, Susannah, Anderson, David G, Asadi-Pooya, Ali A, Aybek, Selma, Baslet, Gaston, Bloem, Bastiaan R, Bradley-Westguard, Abigail, Brown, Richard J, Carson, Alan J, Chalder, Trudie, Damianova, Maria, David, Anthony S, Edwards, Mark J, Epstein, Steven A, Espay, Alberto J, Garcin, Béatrice, Goldstein, Laura H, Hallett, Mark, Jankovic, Joseph, Joyce, Eileen M, Kanaan, Richard A, Keynejad, Roxanne C, Kozlowska, Kasia, LaFaver, Kathrin, LaFrance, Jr., W Curt, Lang, Anthony E, Lehn, Alex, Lidstone, Sarah, Maurer, Carine W, Mildon, Bridget, Morgante, Francesca, Myers, Lorna, Nicholson, Clare, Nielsen, Glenn, Perez, David L, Popkirov, Stoyan, Reuber, Markus, Rommelfanger, Karen S, Schwingenshuh, Petra, Serranova, Tereza, Shotbolt, Paul, Stebbins, Glenn T, Stone, Jon, Tijssen, Marina AJ, Tinazzi, Michele, Nicholson, Timothy R
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7279198/
https://www.ncbi.nlm.nih.gov/pubmed/32111637
http://dx.doi.org/10.1136/jnnp-2019-322180
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author Pick, Susannah
Anderson, David G
Asadi-Pooya, Ali A
Aybek, Selma
Baslet, Gaston
Bloem, Bastiaan R
Bradley-Westguard, Abigail
Brown, Richard J
Carson, Alan J
Chalder, Trudie
Damianova, Maria
David, Anthony S
Edwards, Mark J
Epstein, Steven A
Espay, Alberto J
Garcin, Béatrice
Goldstein, Laura H
Hallett, Mark
Jankovic, Joseph
Joyce, Eileen M
Kanaan, Richard A
Keynejad, Roxanne C
Kozlowska, Kasia
LaFaver, Kathrin
LaFrance, Jr., W Curt
Lang, Anthony E
Lehn, Alex
Lidstone, Sarah
Maurer, Carine W
Mildon, Bridget
Morgante, Francesca
Myers, Lorna
Nicholson, Clare
Nielsen, Glenn
Perez, David L
Popkirov, Stoyan
Reuber, Markus
Rommelfanger, Karen S
Schwingenshuh, Petra
Serranova, Tereza
Shotbolt, Paul
Stebbins, Glenn T
Stone, Jon
Tijssen, Marina AJ
Tinazzi, Michele
Nicholson, Timothy R
author_facet Pick, Susannah
Anderson, David G
Asadi-Pooya, Ali A
Aybek, Selma
Baslet, Gaston
Bloem, Bastiaan R
Bradley-Westguard, Abigail
Brown, Richard J
Carson, Alan J
Chalder, Trudie
Damianova, Maria
David, Anthony S
Edwards, Mark J
Epstein, Steven A
Espay, Alberto J
Garcin, Béatrice
Goldstein, Laura H
Hallett, Mark
Jankovic, Joseph
Joyce, Eileen M
Kanaan, Richard A
Keynejad, Roxanne C
Kozlowska, Kasia
LaFaver, Kathrin
LaFrance, Jr., W Curt
Lang, Anthony E
Lehn, Alex
Lidstone, Sarah
Maurer, Carine W
Mildon, Bridget
Morgante, Francesca
Myers, Lorna
Nicholson, Clare
Nielsen, Glenn
Perez, David L
Popkirov, Stoyan
Reuber, Markus
Rommelfanger, Karen S
Schwingenshuh, Petra
Serranova, Tereza
Shotbolt, Paul
Stebbins, Glenn T
Stone, Jon
Tijssen, Marina AJ
Tinazzi, Michele
Nicholson, Timothy R
author_sort Pick, Susannah
collection PubMed
description 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.
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spelling pubmed-72791982020-06-15 Outcome measurement in functional neurological disorder: a systematic review and recommendations Pick, Susannah Anderson, David G Asadi-Pooya, Ali A Aybek, Selma Baslet, Gaston Bloem, Bastiaan R Bradley-Westguard, Abigail Brown, Richard J Carson, Alan J Chalder, Trudie Damianova, Maria David, Anthony S Edwards, Mark J Epstein, Steven A Espay, Alberto J Garcin, Béatrice Goldstein, Laura H Hallett, Mark Jankovic, Joseph Joyce, Eileen M Kanaan, Richard A Keynejad, Roxanne C Kozlowska, Kasia LaFaver, Kathrin LaFrance, Jr., W Curt Lang, Anthony E Lehn, Alex Lidstone, Sarah Maurer, Carine W Mildon, Bridget Morgante, Francesca Myers, Lorna Nicholson, Clare Nielsen, Glenn Perez, David L Popkirov, Stoyan Reuber, Markus Rommelfanger, Karen S Schwingenshuh, Petra Serranova, Tereza Shotbolt, Paul Stebbins, Glenn T Stone, Jon Tijssen, Marina AJ Tinazzi, Michele Nicholson, Timothy R J Neurol Neurosurg Psychiatry Neuropsychiatry 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. BMJ Publishing Group 2020-06 2020-02-28 /pmc/articles/PMC7279198/ /pubmed/32111637 http://dx.doi.org/10.1136/jnnp-2019-322180 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Neuropsychiatry
Pick, Susannah
Anderson, David G
Asadi-Pooya, Ali A
Aybek, Selma
Baslet, Gaston
Bloem, Bastiaan R
Bradley-Westguard, Abigail
Brown, Richard J
Carson, Alan J
Chalder, Trudie
Damianova, Maria
David, Anthony S
Edwards, Mark J
Epstein, Steven A
Espay, Alberto J
Garcin, Béatrice
Goldstein, Laura H
Hallett, Mark
Jankovic, Joseph
Joyce, Eileen M
Kanaan, Richard A
Keynejad, Roxanne C
Kozlowska, Kasia
LaFaver, Kathrin
LaFrance, Jr., W Curt
Lang, Anthony E
Lehn, Alex
Lidstone, Sarah
Maurer, Carine W
Mildon, Bridget
Morgante, Francesca
Myers, Lorna
Nicholson, Clare
Nielsen, Glenn
Perez, David L
Popkirov, Stoyan
Reuber, Markus
Rommelfanger, Karen S
Schwingenshuh, Petra
Serranova, Tereza
Shotbolt, Paul
Stebbins, Glenn T
Stone, Jon
Tijssen, Marina AJ
Tinazzi, Michele
Nicholson, Timothy R
Outcome measurement in functional neurological disorder: a systematic review and recommendations
title Outcome measurement in functional neurological disorder: a systematic review and recommendations
title_full Outcome measurement in functional neurological disorder: a systematic review and recommendations
title_fullStr Outcome measurement in functional neurological disorder: a systematic review and recommendations
title_full_unstemmed Outcome measurement in functional neurological disorder: a systematic review and recommendations
title_short Outcome measurement in functional neurological disorder: a systematic review and recommendations
title_sort outcome measurement in functional neurological disorder: a systematic review and recommendations
topic Neuropsychiatry
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7279198/
https://www.ncbi.nlm.nih.gov/pubmed/32111637
http://dx.doi.org/10.1136/jnnp-2019-322180
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