Dystonia rating scales: Critique and recommendations

• Type of Material: Article
• Authors: Alberto Albanese, Università Cattolica del sacro Cuore; Francesca Del Sorbo, Istituto Neurologico Carlo Besta; Cynthia Comella, Rush Medical College; Hyder Jinnah, Emory University; Jonathan W. Mink, University of Rochester; Bart Post, Radboud University Nijmegen; Marie Vidailhet, Pitié-Salpêtrière Hospital; Jens Volkmann, University of Wurzburg; Thomas T. Warner, University College London; Albert F. G. Leentjens, Maastricht University Medical Centre; Pablo Martinez-Martin, Carlos III Institute of Health; Glenn T. Stebbins, Rush University; Christopher G. Goetz, Rush University; Anette Schrag, University College London
• Language: English
• Date: 2013-06-15
• Publisher: Wiley
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2013 Movement Disorder Society.
• Final Published Version (URL): http://dx.doi.org/10.1002/mds.25579
• Title of Journal or Parent Work: Movement Disorders
• ISSN: 0885-3185
• Volume: 28
• Issue: 7
• Start Page: 874
• End Page: 883
• Keywords: TERM-FOLLOW-UP; OPTIMIZING OUTCOME ASSESSMENT; SELECTIVE PERIPHERAL DENERVATION; torticollis; blepharospasm; botulinum neurotoxins; BILATERAL PALLIDAL STIMULATION; Life Sciences & Biomedicine; Clinical Neurology; Neurosciences & Neurology; QUALITY-OF-LIFE; dystonias; TOXIN TYPE-B; Science & Technology; DEEP-BRAIN-STIMULATION; BOTULINUM-TOXIN; PRIMARY GENERALIZED DYSTONIA; INCOBOTULINUMTOXINA NT 201; rating scales
• Research Categories: Health Sciences, Medicine and Surgery; Biology, Neuroscience

Abstract

Many rating scales have been applied to the evaluation of dystonia, but only few have been assessed for clinimetric properties. The Movement Disorders Society commissioned this task force to critique existing dystonia rating scales and place them in the clinical and clinimetric context. A systematic literature review was conducted to identify rating scales that have either been validated or used in dystonia. Thirty-six potential scales were identified. Eight were excluded because they did not meet review criteria, leaving 28 scales that were critiqued and rated by the task force. Seven scales were found to meet criteria to be "recommended": the Blepharospasm Disability Index is recommended for rating blepharospasm; the Cervical Dystonia Impact Scale and the Toronto Western Spasmodic Torticollis Rating Scale for rating cervical dystonia; the Craniocervical Dystonia Questionnaire for blepharospasm and cervical dystonia; the Voice Handicap Index (VHI) and the Vocal Performance Questionnaire (VPQ) for laryngeal dystonia; and the Fahn-Marsden Dystonia Rating Scale for rating generalized dystonia. Two "recommended" scales (VHI and VPQ) are generic scales validated on few patients with laryngeal dystonia, whereas the others are disease-specific scales. Twelve scales met criteria for "suggested" and 7 scales met criteria for "listed." All the scales are individually reviewed in the online information. The task force recommends 5 specific dystonia scales and suggests to further validate 2 recommended generic voice-disorder scales in dystonia. Existing scales for oromandibular, arm, and task-specific dystonia should be refined and fully assessed. Scales should be developed for body regions for which no scales are available, such as lower limbs and trunk.