Rating scales for behavioral symptoms in Huntington's disease: Critique and recommendations |
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| Authors: | Tiago A. Mestre MD MSc Erik van Duijn MD PhD Aileen M. Davis PhD Anne‐Catherine Bachoud‐Lévi MD PhD Monica Busse Karen E. Anderson Joaquim J. Ferreira MD PhD Philipp Mahlknecht MD PhD Vitor Tumas MD PhD Cristina Sampaio MD PhD Chris G. Goetz MD Esther Cubo MD Glenn T. Stebbins PhD Pablo Martinez‐Martin PhD the Members of the MDS Committee on Rating Scales Development |
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| Affiliation: | 1. Parkinson's Disease and Movement Disorders Center, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa, Ontario, Canada;2. Psychiatry Department, Leiden University Medical Centre, and Centre for Mental Health Care Delfland, Delft, Netherlands;3. Krembil Research Institute, University Health Network and Institute of Health Policy, Management and Evaluation and Rehabilitation Institute, University of Toronto, Ontario, Canada;4. Assistance Publique‐H?pitaux De Paris, National Centre of Reference for Huntington's Disease, Neurology Department, Université Paris Est, Créteil‐Paris, France;5. School of Healthcare Sciences, Cardiff University, Cardiff, Wales, United Kingdom;6. Georgetown University, School of Medicine, Washington, District of Columbia, USA;7. Neurology and Clinical Pharmacology, University of Lisbon, Institute of Molecular Medicine, Lisbon, Portugal;8. Department of Neurology, Innsbruck Medical University, Innsbruck, Austria;9. Ribeir?o Preto School of Medicine, University of S?o Paulo, S?o Paulo, Brazil;10. CHDI Management/CHDI Foundation, Princeton, New Jersey, USA;11. Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA;12. Department of Neurology, Hospital Universitário Hermanos Yagüe, Burgos, Spain;13. National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain |
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| Abstract: | Behavioral symptoms are an important feature of Huntington's disease and contribute to impairment in quality of life. The Movement Disorder Society commissioned the assessment of the clinimetric properties of rating scales in Huntington's disease to make recommendations regarding their use, following previously used standardized criteria. A systematic literature search was conducted to identify the scales used to assess behavioral symptoms in Huntington's disease. For the purpose of this review, 7 behavioral domains were deemed significant in Huntington's disease: irritability, anxiety, depression, apathy, obsessive‐compulsive behaviors, psychosis, and suicidal ideation. We included a total of 27 behavioral rating scales, 19 of which were of a single behavioral domain and the remaining 8 scales included multiple behavioral domains. Three rating scales were classified as “recommended” exclusively for screening purposes: the Irritability Scale for irritability, the Beck Depression Inventory‐II, and the Hospital Anxiety and Depression Scale for depression. There were no “recommended” scales for other purposes such as diagnosis, severity, or change in time or to treatment. The main challenges identified for assessment of behavioral symptoms in Huntington's disease are the co‐occurrence of multiple behavioral symptoms, the particular features of a behavioral symptom in Huntington's disease, and the need to address stage‐ and disease‐specific features, including cognitive impairment and lack of insight. The committee concluded that there is a need to further validate currently available behavioral rating scales in Huntington's disease to address gaps in scale validation for specific behavioral domains and purpose of use. © 2016 International Parkinson and Movement Disorder Society |
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| Keywords: | Huntington's disease behavior anxiety depression irritability rating scales |
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