1. Development and validation of the Dystonia Pain Classification System:a multicenter study
- Author
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Listik, Clarice, Listik, Eduardo, de Paiva Santos Rolim, Flávia, Meneses Cury Portela, Denise Maria, Perez Lloret, Santiago, Alves de Araújo, Natália Rebeca, Araújo Carvalho, Pedro Rubens, Santos, Graziele Costa, Papaterra Limongi, João Carlos, Cardoso, Francisco, Mylius, Veit, Brugger, Florian, Fernandes, Ana Mércia, Barbosa, Egberto Reis, Teixeira, Manoel Jacobsen, Ferraz, Henrique Ballalai, Teixeira Camargos, Sarah, Cury, Rubens Gisbert, de Andrade, Daniel Ciampi, Paulo do Nascimento, Rose Mary, Cunningham, Mauro, Silveira Moriyama, Laura, Maia Carvalho, Fernanda Martins, Curcino Nogueira Lino, Suzana, Vale, Fabricio, and Lapa, Jorge Dornellys da Silva
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pain classification ,Chronic pain ,pain ,dystonia ,non-motor symptoms - Abstract
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.
- Published
- 2023
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