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Pain Assessment in Cervical Dystonia: Insights from the PIDS and Dystonia-PCS Scales

F. Rolim, D. Monteiro, P. Santos, A. Lima Verde, D. Portela, M. Cordellini, C. Listik, F. Carvalho (Fortaleza, Brazil)

Meeting: 2025 International Congress

Keywords: Dystonia: Clinical features, Pain

Category: Dystonia: Epidemiology, phenomenology, clinical assessment, rating scales

Objective: To assess pain in patients with cervical dystonia using Pain in Dystonia Scale (PIDS) and Dystonia-Pain Classification System (Dystonia-PCS).

Background: Dystonia is a heterogeneous group of movement disorders that can have acquired hereditary or idiopathic causes (1). Although it has been widely studied for its motor aspects, few studies have been conducted on its non-motor symptoms, such as pain, which significantly impacts patients’ lives. Pain in cervical dystonia can be intense, and its proper assessment is essential for effective therapeutic management. The PIDS and Dystonia-PCS scales were developed to measure this pain precisely. A comparison between the two has not yet been conducted (2,3,4).

Method: Single-center cross-sectional study with 19 patients diagnosed with cervical dystonia. Sociodemographic and clinical variables were collected, including age at diagnosis, gender, schooling, length of illness, etiology, and presence of associated movement disorders. Pain was assessed by PIDS and Dystonia-PCS scales.

Results: We evaluated 19 patients diagnosed with cervical dystonia. Average age at diagnosis was 43.8 years (SD = 14.3). Most patients were female (77.8%), and 55.5% had been living with dystonia for between 6 and 15 years. The predominant cause of the condition was idiopathic, accounting for 88.8% of cases. Only one patient presented with associated parkinsonism. Cervical region was the most affected by pain. PIDS scores had an average of 15 points (SD = 8,5; 0-27). Dystonia-PCS scores had a mean of 34.6 (SD = 25.17; 0-81), reflecting a wide variation in pain intensity and subjective impact among the patients assessed.

Conclusion: Both PIDS and Dystonia-PCS scales were developed to assess pain in dystonia, offering complementary insights. PIDS focuses on quantifying pain intensity and distribution, allowing for a detailed assessment of how pain varies across different body regions. In contrast, Dystonia-PCS not only measures pain intensity but also considers the broader impact of pain on a patient’s overall well-being. The higher variability in scores observed in the Dystonia-PCS highlights its sensitivity to individual differences in pain perception and experience.

References: 1.Albanese A, Sorbo FD, Comella C, Jinnah HA, Mink JW, Post B, Vidailhet M, Volkmann J, Warner TT, Leentjens AF, Martinez-Martin P, Stebbins GT, Goetz CG, Schrag A. Dystonia rating scales: critique and recommendations. Mov Disord. 2013 Jun 15;28(7):874-83. doi: 10.1002/mds.25579. PMID: 23893443; PMCID: PMC4207366.
2.Listik C, Listik E, de Paiva Santos Rolim F, Meneses Cury Portela DM, Perez Lloret S, de Alves Araújo NR, Carvalho PRA, Santos GC, Limongi JCP, Cardoso F, Mylius V, Brugger F, Fernandes AM, Reis Barbosa E, Jacobsen Teixeira M, Ferraz HB, Camargos ST; Pain in Dystonia Study Group; Cury RG, de Andrade DC. Development and Validation of the Dystonia-Pain Classification System: A Multicenter Study. Mov Disord. 2023 Jul;38(7):1163-1174. doi: 10.1002/mds.29423. Epub 2023 May 20. PMID: 37208983.
3.Bruno V, Achen B, Morgante F, Erro R, Fox SH, Edwards MJ, Schrag A, Stamelou M, Appel-Cresswell S, Defazio G, Chaudhuri KR, Pirio Richardson S, Jinnah HA, Martino D. The Pain in Dystonia Scale (PIDS)-Development and Validation in Cervical Dystonia. Mov Disord. 2023 Jul;38(7):1175-1186. doi: 10.1002/mds.29452. Epub 2023 May 25. PMID: 37226973.
4.Tinazzi M, Artusi CA. Filling the Gap in Assessing Pain in Dystonia. Mov Disord. 2023 Jul;38(7):1121-1124. doi: 10.1002/mds.29505. PMID: 37505206.

To cite this abstract in AMA style:

F. Rolim, D. Monteiro, P. Santos, A. Lima Verde, D. Portela, M. Cordellini, C. Listik, F. Carvalho. Pain Assessment in Cervical Dystonia: Insights from the PIDS and Dystonia-PCS Scales [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/pain-assessment-in-cervical-dystonia-insights-from-the-pids-and-dystonia-pcs-scales/. Accessed October 5, 2025.
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