Clinimetric Testing of the Modules for the Comprehensive Cervical Dystonia Rating Scale (CCDRS) (S27.004)

OBJECTIVE: To test the clinimetrics of the modular comprehensive cervical dystonia (CD) rating scale (CCDRS), that evaluates severity of motor and non-motor features BACKGROUND: The CCDRS is a modular, comprehensive scale that rates the multiple features of CD not currently captured by other scales. DESIGN/METHODS: Patients with CD were evaluated with the CCDRS developed using a modified Delphi methodology. The CCDRS includes 3 modules: revised Toronto Western Spasmodic Torticollis Rating scale (TWSTRS-2); TWSTRS-PSYCH (a psychiatric screen); and the Cervical Dystonia Impact Profile-58 (CDIP-58). With classical clinimetric techniques we analyzed the modules of the CCDRS for reliability, item correlations, and factor structure. RESULTS: 209 CD patients (73% women, age 59+10 years, CD duration 15+12 years) were included from 10 sites. Internal consistency of the TWSTRS-2 severity had an acceptable Cronbach’s alpha of 0.60. Item to total correlations showed that elimination of selected items with low correlations (<0.20) (anterocollis, retrocollis, lateral and sagittal shift, dystonic neck tremor and effect of sensory tricks) increased alpha to 0.71. Construct validity of the total TWSTRS-2 using an exploratory factor analysis showed three factors: Motor severity, disability and pain. Items with low item to total correlations above did not have sufficient factor loadings to be included. The TWSTRS-PSYCH had a Cronbach’s alpha of 0.84. All item to total correlations were satisfactory, and factor analysis results revealed one factor. When TWSTRS-2 and TWSTRS-PSYCH were combined, alpha increased to 0.88 with four factors (motor, disability, pain and psychiatric issues). The CDIP-58 had an alpha (0.98) with 8 factors. However, several items loaded on multiple factors. CONCLUSIONS: The modules of the CCDRS are reliable with a logical factor structure. Together these modules incorporate objective and patient perceptions to provide within a single scale a method for assessing the neurological burden of cervical dystonia. Study Supported by: Dystonia Coalition (NIH-NINDS/ORDR-NCATS U54 N5065701; Dystonia Medical Research Foundation; Dystonia Study Group; Allergan Pharmaceuticals Disclosure: Dr. Comella has received personal compensation for activities with Ipsen, Merz, Allergan, Inc., Medtronic, Inc., Teva Neuroscience, US World Meds, and Impax. Dr. Comella has received research support from Ipsen, Merz, Allergan, Inc., NIH, Dystonia Coalition, and Dystonia Medical Research Foundation. Dr. Perlmutter has received personal compensation for activities with the University of Louisville, Toronto Western University Hospital, the University of Maryland, and Rhode Island General Hospital. Dr. Perlmutter has received research support from Express Scripts, the National Institutes of Health, American Parkinson Disease Association, HDSA, CHDI, and the Michael J Fox Foundation. Dr. Jinnah has received research support from Psyadon Pharmaceuticals, Inc., and Merz Pharma. Dr. Adler has received personal compensation for activities with Merz, Impax, Teva Neuroscience, and Novartis. Dr. Adler has received research support from Avid Radiopharmaceuticals. Dr Barbano has received personal compensation for activities with Allergan as a consultant. Dr Barbano has received research support from Allergan and Merz Pharma. Dr. Factor has received personal compensation for activities with University of Florida, Merz Pharma, Chelsea Therapeutics, and ADAMAS. Dr. Factor has received personal compensation in an editorial capacity for Current Neurology and Neuroscience, and Up to Date. Dr. Factor has received research support from Ceregene, Teva Neuroscience, Ipsen, EMD Serono, Medtronic, Inc., and Allergan, Inc. Dr. Fox has received personal compensation for activities with Merz Pharma, UCB Phama, Novartis, Teva Neuroscience, and Ipsen. Dr. Fox has received research support from Merck Serono. Dr. Goetz has received personal compensation for activities with AOP Orphan, Addex Pharma, Advanced Studies of Medicine, Boston Scientific Corp., CHDI Foundation, Health Advances, ICON Clinical Research, Ingenix, and the National Institutes of Health. Dr. Goetz has received personal compensation in an editorial capacity for Oxford University Press, Elsevier Publishers, Wolters Kluwer Health-Lippincott, Wilkins and Williams, Movement Disorder, American Academy of Neurology, and the Unviersity of Pennsylvania. Dr. Goetz has received research support from the National Institutes of Health, the Michael J Fox Foundation, and The Parkinson9s Disease Foundation. Dr. Galpern has nothing to disclose. Dr. Jankovic has received personal compensation for activities with Allergan, Inc., Chelsea Therapeutics, EMD Serono, Merz Pharmaceuticals, Lundbeck, and Teva Neuroscience as a consultant. Dr. Jankovic has received personal compensation in an editorial capacity for Medlink: Neurology in Clinical Practice. Dr. Jankovic has received research support from Allergan, Inc, Allon Therapeutics, Ceregene, Inc, Chelsea Therapeutics, Diana Helis Henry Medical Research Foundation, EMD Serono, Huntington9s Disease Society of America, Huntington Study Group, Impax Pharmaceuticals, and Ipsen Limited. Dr. Marsh has received research support from Veterans Health Administration, National Institutes of Health, American Psychiatric Association, and Dystonia Medical Research Association. Dr. Mcdonald has nothing to disclose. Dr. Reich has received royalty payments from Movement Disorders: 100 Instructive Cases. Dr. Reich has received research support from NINDS, Chiltern, Synosia, and Phytopharm. Dr. Rodriguez has received personal compensation for activities with Allergan Inc., Merz Pharma, Lundbeck Research USA, Inc., and Teva Neuroscience. Dr. Rosen has nothing to disclose. Dr. Severt has received personal compensation for activities with Teva Neuroscience, Allergan Inc., Merz Pharma, and UCB Pharma. Dr. Severt has received research support from Teva Neuroscience and Merz Pharma. Dr. Waliczek has nothing to disclose. Dr. Stebbins has received personal compensation for activities with Adamas Pharmaceuticals, Ceregene Inc., CHDI Management, Ingenix Pharmaceuticals, and Neurocrine Biosciences as a consultant.