Development of the Comprehensive Cervical Dystonia Rating Scale: Methodology.

• Type of Material: Article
• Authors: Cynthia L. Comella, Rush Medical School; Susan H. Fox, University of Toronto; Kailash P. Bhatia, University College London; Joel S. Perlmutter, Washington University in St. Louis; Hyder Jinnah, Emory University; Mateusz Zurowski, University of Toronto; William McDonald, Emory University; Laura Marsh, Baylor College of Medicine; Ami R. Rosen, Emory University; Tracy Waliczek, Rush Medical School; Laura J. Wright, Washington University in St. Louis; Wendy R. Galpern, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.; Glenn T. Stebbins, Rush Medical School
• Language: English
• Date: 2015-06
• Publisher: Wiley
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2015 International Parkinson and Movement Disorder Society
• Final Published Version (URL): http://dx.doi.org/10.1002/mdc3.12131
• Title of Journal or Parent Work: Movement Disorders Clinical Practice
• ISSN: 2330-1619
• Volume: 2
• Issue: 2
• Start Page: 135
• End Page: 141
• Grant/Funding Information: This study was funded by National Institutes of Health (NIH) grant NS 065701 from the National Institute of Neurological Disorders and Stroke (NINDS) and the Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS), NIH. Funding was also received from the DMRF and Allergan Inc.
• Keywords: cervical dystonia; TWSTRS; Neurology; rating scale; CDIP-58; focal dystonia
• Research Categories: Health Sciences, Medicine and Surgery; Biology, Neuroscience

Abstract

We present the methodology utilized for development and clinimetric testing of the Comprehensive Cervical Dystonia (CD) Rating scale, or CCDRS. The CCDRS includes a revision of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS-2), a newly developed psychiatric screening tool (TWSTRS-PSYCH), and the previously validated Cervical Dystonia Impact Profile (CDIP-58). For the revision of the TWSTRS, the original TWSTRS was examined by a committee of dystonia experts at a dystonia rating scales workshop organized by the Dystonia Medical Research Foundation. During this workshop, deficiencies in the standard TWSTRS were identified and recommendations for revision of the severity and pain subscales were incorporated into the TWSTRS-2. Given that no scale currently evaluates the psychiatric features of cervical dystonia (CD), we used a modified Delphi methodology and a reiterative process of item selection to develop the TWSTRS-PSYCH. We also included the CDIP-58 to capture the impact of CD on quality of life. The three scales (TWSTRS2, TWSTRS-PSYCH, and CDIP-58) were combined to construct the CCDRS. Clinimetric testing of reliability and validity of the CCDRS are described. The CCDRS was designed to be used in a modular fashion that can measure the full spectrum of CD. This scale will provide rigorous assessment for studies of natural history as well as novel symptom-based or disease-modifying therapies.