Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study

Autores
Listik, Clarice; Listik, Eduardo; santos, Flavia de Paiva; Portela, Denise Maria Meneces Cury; Perez Lloret, Santiago; Araújo, Natália Rebeca de Alves; Carvalho, Pedro Rubens Araújo; Santos, Graziele Costa; Limongi, João Carlos Papaterra; Cardoso, Francisco; Mylius, Veit; Brugger, Florian; Fernandes, Ana Mercia; Barbosa, Egberto Reis; Teixeira, Manoel Jacobsen; Cury, Rubens Gisbert; Andrade, Daniel Ciampi de
Año de publicación
2023
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
Background Dystonia is associated with disabling nonmotor symptoms like chronic pain (CP), which is prevalent in dystonia and significantly impacts the quality of life (QoL). There is no validated tool for assessing CP in dystonia, which substantially hampers pain management. Objective The aim was to develop a CP classification and scoring system for dystonia. Methods A multidisciplinary group was established to develop the Dystonia-Pain Classification System (Dystonia-PCS). The classification of CP as related or unrelated to dystonia was followed by the assessment of pain severity score, encompassing pain intensity, frequency, and impact on daily living. Then, consecutive patients with inherited/idiopathic dystonia of different spatial distribution were recruited in a cross-sectional multicenter validation study. Dystonia-PCS was compared to validated pain, mood, QoL, and dystonia scales (Brief Pain Inventory, Douleur Neuropathique-4 questionnaire, European QoL-5 Dimensions-3 Level Version, and Burke–Fahn–Marsden Dystonia Rating Scale). Results CP was present in 81 of 123 recruited patients, being directly related to dystonia in 82.7%, aggravated by dystonia in 8.8%, and nonrelated to dystonia in 7.5%. Dystonia-PCS had excellent intra-rater (Intraclass Correlation Coefficient - ICC: 0.941) and inter-rater (ICC: 0.867) reliability. In addition, pain severity score correlated with European QoL-5 Dimensions-3 Level Version's pain subscore (r = 0.635, P < 0.001) and the Brief Pain Inventory's severity and interference scores (r = 0.553, P < 0.001 and r = 0.609, P < 0.001, respectively). Conclusions Dystonia-PCS is a reliable tool to categorize and quantify CP impact in dystonia and will help improve clinical trial design and management of CP in patients affected by this disorder.
Fil: Listik, Clarice. Universidade Federal de Sao Paulo.; Brasil
Fil: Listik, Eduardo. University of Alabama at Birmingahm; Estados Unidos
Fil: santos, Flavia de Paiva. Hospital Geral de Fortaleza; Brasil
Fil: Portela, Denise Maria Meneces Cury. Instituto de Ensino Superior do Piaui; Brasil
Fil: Perez Lloret, Santiago. Universidad Abierta Interamericana. Vicerrectoria de Investigación. Centro de Altos Estudios En Ciencias Sociales.; Argentina. Universidad de Buenos Aires; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
Fil: Araújo, Natália Rebeca de Alves. Instituto de Ensino Superior do Piaui; Brasil
Fil: Carvalho, Pedro Rubens Araújo. Hospital Geral de Fortaleza; Brasil
Fil: Santos, Graziele Costa. Universidade Federal de Sao Paulo; Brasil
Fil: Limongi, João Carlos Papaterra. Universidade de Sao Paulo; Brasil
Fil: Cardoso, Francisco. Universidade Federal de Minas Gerais; Brasil
Fil: Mylius, Veit. Philipps University; Alemania. Center for Neurorehabilitation; Suiza
Fil: Brugger, Florian. Kantonsspital St. Gallen; Suiza
Fil: Fernandes, Ana Mercia. Universidade de Sao Paulo; Brasil
Fil: Barbosa, Egberto Reis. Universidade de Sao Paulo; Brasil
Fil: Teixeira, Manoel Jacobsen. Universidade Federal de Minas Gerais; Brasil
Fil: Cury, Rubens Gisbert. Universidade de Sao Paulo; Brasil
Fil: Andrade, Daniel Ciampi de. Universidade de Sao Paulo; Brasil. Aalborg University; Dinamarca
Materia
chronic pain
dystonia
non motor symptoms
pain
Nivel de accesibilidad
acceso abierto
Condiciones de uso
https://creativecommons.org/licenses/by-nc-nd/2.5/ar/
Repositorio
CONICET Digital (CONICET)
Institución
Consejo Nacional de Investigaciones Científicas y Técnicas
OAI Identificador
oai:ri.conicet.gov.ar:11336/236563

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network_name_str CONICET Digital (CONICET)
spelling Development and Validation of the Dystonia-Pain Classification System: A Multicenter StudyListik, ClariceListik, Eduardosantos, Flavia de PaivaPortela, Denise Maria Meneces CuryPerez Lloret, SantiagoAraújo, Natália Rebeca de AlvesCarvalho, Pedro Rubens AraújoSantos, Graziele CostaLimongi, João Carlos PapaterraCardoso, FranciscoMylius, VeitBrugger, FlorianFernandes, Ana MerciaBarbosa, Egberto ReisTeixeira, Manoel JacobsenCury, Rubens GisbertAndrade, Daniel Ciampi dechronic paindystonianon motor symptomspainhttps://purl.org/becyt/ford/3.2https://purl.org/becyt/ford/3Background Dystonia is associated with disabling nonmotor symptoms like chronic pain (CP), which is prevalent in dystonia and significantly impacts the quality of life (QoL). There is no validated tool for assessing CP in dystonia, which substantially hampers pain management. Objective The aim was to develop a CP classification and scoring system for dystonia. Methods A multidisciplinary group was established to develop the Dystonia-Pain Classification System (Dystonia-PCS). The classification of CP as related or unrelated to dystonia was followed by the assessment of pain severity score, encompassing pain intensity, frequency, and impact on daily living. Then, consecutive patients with inherited/idiopathic dystonia of different spatial distribution were recruited in a cross-sectional multicenter validation study. Dystonia-PCS was compared to validated pain, mood, QoL, and dystonia scales (Brief Pain Inventory, Douleur Neuropathique-4 questionnaire, European QoL-5 Dimensions-3 Level Version, and Burke–Fahn–Marsden Dystonia Rating Scale). Results CP was present in 81 of 123 recruited patients, being directly related to dystonia in 82.7%, aggravated by dystonia in 8.8%, and nonrelated to dystonia in 7.5%. Dystonia-PCS had excellent intra-rater (Intraclass Correlation Coefficient - ICC: 0.941) and inter-rater (ICC: 0.867) reliability. In addition, pain severity score correlated with European QoL-5 Dimensions-3 Level Version's pain subscore (r = 0.635, P < 0.001) and the Brief Pain Inventory's severity and interference scores (r = 0.553, P < 0.001 and r = 0.609, P < 0.001, respectively). Conclusions Dystonia-PCS is a reliable tool to categorize and quantify CP impact in dystonia and will help improve clinical trial design and management of CP in patients affected by this disorder.Fil: Listik, Clarice. Universidade Federal de Sao Paulo.; BrasilFil: Listik, Eduardo. University of Alabama at Birmingahm; Estados UnidosFil: santos, Flavia de Paiva. Hospital Geral de Fortaleza; BrasilFil: Portela, Denise Maria Meneces Cury. Instituto de Ensino Superior do Piaui; BrasilFil: Perez Lloret, Santiago. Universidad Abierta Interamericana. Vicerrectoria de Investigación. Centro de Altos Estudios En Ciencias Sociales.; Argentina. Universidad de Buenos Aires; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Araújo, Natália Rebeca de Alves. Instituto de Ensino Superior do Piaui; BrasilFil: Carvalho, Pedro Rubens Araújo. Hospital Geral de Fortaleza; BrasilFil: Santos, Graziele Costa. Universidade Federal de Sao Paulo; BrasilFil: Limongi, João Carlos Papaterra. Universidade de Sao Paulo; BrasilFil: Cardoso, Francisco. Universidade Federal de Minas Gerais; BrasilFil: Mylius, Veit. Philipps University; Alemania. Center for Neurorehabilitation; SuizaFil: Brugger, Florian. Kantonsspital St. Gallen; SuizaFil: Fernandes, Ana Mercia. Universidade de Sao Paulo; BrasilFil: Barbosa, Egberto Reis. Universidade de Sao Paulo; BrasilFil: Teixeira, Manoel Jacobsen. Universidade Federal de Minas Gerais; BrasilFil: Cury, Rubens Gisbert. Universidade de Sao Paulo; BrasilFil: Andrade, Daniel Ciampi de. Universidade de Sao Paulo; Brasil. Aalborg University; DinamarcaJohn Wiley & Sons Ltd2023-07info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfapplication/pdfhttp://hdl.handle.net/11336/236563Listik, Clarice; Listik, Eduardo; santos, Flavia de Paiva; Portela, Denise Maria Meneces Cury; Perez Lloret, Santiago; et al.; Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study; John Wiley & Sons Ltd; Movement Disorders; 38; 7; 7-2023; 1163-11741531-8257CONICET DigitalCONICETenginfo:eu-repo/semantics/altIdentifier/doi/10.1002/mds.29423info:eu-repo/semantics/altIdentifier/url/https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29423info:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-nd/2.5/ar/reponame:CONICET Digital (CONICET)instname:Consejo Nacional de Investigaciones Científicas y Técnicas2025-09-03T09:48:41Zoai:ri.conicet.gov.ar:11336/236563instacron:CONICETInstitucionalhttp://ri.conicet.gov.ar/Organismo científico-tecnológicoNo correspondehttp://ri.conicet.gov.ar/oai/requestdasensio@conicet.gov.ar; lcarlino@conicet.gov.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:34982025-09-03 09:48:42.239CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicasfalse
dc.title.none.fl_str_mv Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
title Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
spellingShingle Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
Listik, Clarice
chronic pain
dystonia
non motor symptoms
pain
title_short Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
title_full Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
title_fullStr Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
title_full_unstemmed Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
title_sort Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study
dc.creator.none.fl_str_mv Listik, Clarice
Listik, Eduardo
santos, Flavia de Paiva
Portela, Denise Maria Meneces Cury
Perez Lloret, Santiago
Araújo, Natália Rebeca de Alves
Carvalho, Pedro Rubens Araújo
Santos, Graziele Costa
Limongi, João Carlos Papaterra
Cardoso, Francisco
Mylius, Veit
Brugger, Florian
Fernandes, Ana Mercia
Barbosa, Egberto Reis
Teixeira, Manoel Jacobsen
Cury, Rubens Gisbert
Andrade, Daniel Ciampi de
author Listik, Clarice
author_facet Listik, Clarice
Listik, Eduardo
santos, Flavia de Paiva
Portela, Denise Maria Meneces Cury
Perez Lloret, Santiago
Araújo, Natália Rebeca de Alves
Carvalho, Pedro Rubens Araújo
Santos, Graziele Costa
Limongi, João Carlos Papaterra
Cardoso, Francisco
Mylius, Veit
Brugger, Florian
Fernandes, Ana Mercia
Barbosa, Egberto Reis
Teixeira, Manoel Jacobsen
Cury, Rubens Gisbert
Andrade, Daniel Ciampi de
author_role author
author2 Listik, Eduardo
santos, Flavia de Paiva
Portela, Denise Maria Meneces Cury
Perez Lloret, Santiago
Araújo, Natália Rebeca de Alves
Carvalho, Pedro Rubens Araújo
Santos, Graziele Costa
Limongi, João Carlos Papaterra
Cardoso, Francisco
Mylius, Veit
Brugger, Florian
Fernandes, Ana Mercia
Barbosa, Egberto Reis
Teixeira, Manoel Jacobsen
Cury, Rubens Gisbert
Andrade, Daniel Ciampi de
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv chronic pain
dystonia
non motor symptoms
pain
topic chronic pain
dystonia
non motor symptoms
pain
purl_subject.fl_str_mv https://purl.org/becyt/ford/3.2
https://purl.org/becyt/ford/3
dc.description.none.fl_txt_mv Background Dystonia is associated with disabling nonmotor symptoms like chronic pain (CP), which is prevalent in dystonia and significantly impacts the quality of life (QoL). There is no validated tool for assessing CP in dystonia, which substantially hampers pain management. Objective The aim was to develop a CP classification and scoring system for dystonia. Methods A multidisciplinary group was established to develop the Dystonia-Pain Classification System (Dystonia-PCS). The classification of CP as related or unrelated to dystonia was followed by the assessment of pain severity score, encompassing pain intensity, frequency, and impact on daily living. Then, consecutive patients with inherited/idiopathic dystonia of different spatial distribution were recruited in a cross-sectional multicenter validation study. Dystonia-PCS was compared to validated pain, mood, QoL, and dystonia scales (Brief Pain Inventory, Douleur Neuropathique-4 questionnaire, European QoL-5 Dimensions-3 Level Version, and Burke–Fahn–Marsden Dystonia Rating Scale). Results CP was present in 81 of 123 recruited patients, being directly related to dystonia in 82.7%, aggravated by dystonia in 8.8%, and nonrelated to dystonia in 7.5%. Dystonia-PCS had excellent intra-rater (Intraclass Correlation Coefficient - ICC: 0.941) and inter-rater (ICC: 0.867) reliability. In addition, pain severity score correlated with European QoL-5 Dimensions-3 Level Version's pain subscore (r = 0.635, P < 0.001) and the Brief Pain Inventory's severity and interference scores (r = 0.553, P < 0.001 and r = 0.609, P < 0.001, respectively). Conclusions Dystonia-PCS is a reliable tool to categorize and quantify CP impact in dystonia and will help improve clinical trial design and management of CP in patients affected by this disorder.
Fil: Listik, Clarice. Universidade Federal de Sao Paulo.; Brasil
Fil: Listik, Eduardo. University of Alabama at Birmingahm; Estados Unidos
Fil: santos, Flavia de Paiva. Hospital Geral de Fortaleza; Brasil
Fil: Portela, Denise Maria Meneces Cury. Instituto de Ensino Superior do Piaui; Brasil
Fil: Perez Lloret, Santiago. Universidad Abierta Interamericana. Vicerrectoria de Investigación. Centro de Altos Estudios En Ciencias Sociales.; Argentina. Universidad de Buenos Aires; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
Fil: Araújo, Natália Rebeca de Alves. Instituto de Ensino Superior do Piaui; Brasil
Fil: Carvalho, Pedro Rubens Araújo. Hospital Geral de Fortaleza; Brasil
Fil: Santos, Graziele Costa. Universidade Federal de Sao Paulo; Brasil
Fil: Limongi, João Carlos Papaterra. Universidade de Sao Paulo; Brasil
Fil: Cardoso, Francisco. Universidade Federal de Minas Gerais; Brasil
Fil: Mylius, Veit. Philipps University; Alemania. Center for Neurorehabilitation; Suiza
Fil: Brugger, Florian. Kantonsspital St. Gallen; Suiza
Fil: Fernandes, Ana Mercia. Universidade de Sao Paulo; Brasil
Fil: Barbosa, Egberto Reis. Universidade de Sao Paulo; Brasil
Fil: Teixeira, Manoel Jacobsen. Universidade Federal de Minas Gerais; Brasil
Fil: Cury, Rubens Gisbert. Universidade de Sao Paulo; Brasil
Fil: Andrade, Daniel Ciampi de. Universidade de Sao Paulo; Brasil. Aalborg University; Dinamarca
description Background Dystonia is associated with disabling nonmotor symptoms like chronic pain (CP), which is prevalent in dystonia and significantly impacts the quality of life (QoL). There is no validated tool for assessing CP in dystonia, which substantially hampers pain management. Objective The aim was to develop a CP classification and scoring system for dystonia. Methods A multidisciplinary group was established to develop the Dystonia-Pain Classification System (Dystonia-PCS). The classification of CP as related or unrelated to dystonia was followed by the assessment of pain severity score, encompassing pain intensity, frequency, and impact on daily living. Then, consecutive patients with inherited/idiopathic dystonia of different spatial distribution were recruited in a cross-sectional multicenter validation study. Dystonia-PCS was compared to validated pain, mood, QoL, and dystonia scales (Brief Pain Inventory, Douleur Neuropathique-4 questionnaire, European QoL-5 Dimensions-3 Level Version, and Burke–Fahn–Marsden Dystonia Rating Scale). Results CP was present in 81 of 123 recruited patients, being directly related to dystonia in 82.7%, aggravated by dystonia in 8.8%, and nonrelated to dystonia in 7.5%. Dystonia-PCS had excellent intra-rater (Intraclass Correlation Coefficient - ICC: 0.941) and inter-rater (ICC: 0.867) reliability. In addition, pain severity score correlated with European QoL-5 Dimensions-3 Level Version's pain subscore (r = 0.635, P < 0.001) and the Brief Pain Inventory's severity and interference scores (r = 0.553, P < 0.001 and r = 0.609, P < 0.001, respectively). Conclusions Dystonia-PCS is a reliable tool to categorize and quantify CP impact in dystonia and will help improve clinical trial design and management of CP in patients affected by this disorder.
publishDate 2023
dc.date.none.fl_str_mv 2023-07
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://purl.org/coar/resource_type/c_6501
info:ar-repo/semantics/articulo
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/11336/236563
Listik, Clarice; Listik, Eduardo; santos, Flavia de Paiva; Portela, Denise Maria Meneces Cury; Perez Lloret, Santiago; et al.; Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study; John Wiley & Sons Ltd; Movement Disorders; 38; 7; 7-2023; 1163-1174
1531-8257
CONICET Digital
CONICET
url http://hdl.handle.net/11336/236563
identifier_str_mv Listik, Clarice; Listik, Eduardo; santos, Flavia de Paiva; Portela, Denise Maria Meneces Cury; Perez Lloret, Santiago; et al.; Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study; John Wiley & Sons Ltd; Movement Disorders; 38; 7; 7-2023; 1163-1174
1531-8257
CONICET Digital
CONICET
dc.language.none.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv info:eu-repo/semantics/altIdentifier/doi/10.1002/mds.29423
info:eu-repo/semantics/altIdentifier/url/https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29423
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
https://creativecommons.org/licenses/by-nc-nd/2.5/ar/
eu_rights_str_mv openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by-nc-nd/2.5/ar/
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv John Wiley & Sons Ltd
publisher.none.fl_str_mv John Wiley & Sons Ltd
dc.source.none.fl_str_mv reponame:CONICET Digital (CONICET)
instname:Consejo Nacional de Investigaciones Científicas y Técnicas
reponame_str CONICET Digital (CONICET)
collection CONICET Digital (CONICET)
instname_str Consejo Nacional de Investigaciones Científicas y Técnicas
repository.name.fl_str_mv CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicas
repository.mail.fl_str_mv dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar
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