TY - JOUR
T1 - Development and validation of the Dystonia Pain Classification System
T2 - a multicenter study
AU - Listik, Clarice
AU - Listik, Eduardo
AU - de Paiva Santos Rolim, Flávia
AU - Meneses Cury Portela, Denise Maria
AU - Perez Lloret, Santiago
AU - Alves de Araújo, Natália Rebeca
AU - Araújo Carvalho, Pedro Rubens
AU - Santos, Graziele Costa
AU - Papaterra Limongi, João Carlos
AU - Cardoso, Francisco
AU - Mylius, Veit
AU - Brugger, Florian
AU - Fernandes, Ana Mércia
AU - Barbosa, Egberto Reis
AU - Teixeira, Manoel Jacobsen
AU - Ferraz, Henrique Ballalai
AU - Teixeira Camargos, Sarah
AU - Pain in Dystonia study group
AU - Cury, Rubens Gisbert
AU - de Andrade, Daniel Ciampi
A2 - Paulo do Nascimento, Rose Mary
A2 - Cunningham, Mauro
A2 - Silveira Moriyama, Laura
A2 - Maia Carvalho, Fernanda Martins
A2 - Curcino Nogueira Lino, Suzana
A2 - Vale, Fabricio
A2 - Lapa, Jorge Dornellys da Silva
N1 - Funding source: the Pain Center - HC-FMUSP. MJT and DCA are funded by CNPq (scientific production scholarship by Conselho Nacional de Pesquisa. The Center for Neuroplasticity and Pain is supported by the Danish National Research Foundation (DNRF121). Daniel Ciampi de Andrade is supported by Novo Nordisk Grant NNF21OC0072828.
PY - 2023/7
Y1 - 2023/7
N2 - 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.
AB - 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.
KW - Chronic pain
KW - dystonia
KW - non-motor symptoms
KW - pain
KW - pain classification
UR - http://www.scopus.com/inward/record.url?scp=85159824242&partnerID=8YFLogxK
U2 - 10.1002/mds.29423
DO - 10.1002/mds.29423
M3 - Journal article
SN - 0885-3185
VL - 38
SP - 1163
EP - 1174
JO - Movement Disorders
JF - Movement Disorders
IS - 7
ER -