Rating scales for behavioral symptoms in Huntington's disease: Critique and recommendations.
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.
Parkinson's Disease and Movement Disorders Center, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa, Ontario, Canada. tmestre@toh.on.ca.
Tiago A
TA
Mestre
Psychiatry Department, Leiden University Medical Centre, and Centre for Mental Health Care Delfland, Delft, Netherlands.
Erik
E
van Duijn
Krembil Research Institute, University Health Network and Institute of Health Policy, Management and Evaluation and Rehabilitation Institute, University of Toronto, Ontario, Canada.
Aileen M
AM
Davis
Assistance Publique-Hôpitaux De Paris, National Centre of Reference for Huntington's Disease, Neurology Department, Université Paris Est, Créteil; INSERM U955 E01, Institut Mondor De Recherché Biomédicale, École Normale Supérieure, Créteil-Paris, France.
Anne-Catherine
AC
Bachoud-Lévi
School of Healthcare Sciences, Cardiff University, Cardiff, Wales, United Kingdom.
Monica
M
Busse
Georgetown University, School of Medicine, Washington, District of Columbia, USA.
Karen E
KE
Anderson
Neurology and Clinical Pharmacology, University of Lisbon, Institute of Molecular Medicine, Lisbon, Portugal.
Joaquim J
JJ
Ferreira
Department of Neurology, Innsbruck Medical University, Innsbruck, Austria.
Philipp
P
Mahlknecht
Ribeirão Preto School of Medicine, University of São Paulo, São Paulo, Brazil.
Vitor
V
Tumas
CHDI Management/CHDI Foundation, Princeton, New Jersey, USA.
Cristina
C
Sampaio
Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.
Chris G
CG
Goetz
Department of Neurology, Hospital Universitário Hermanos Yagüe, Burgos, Spain.
Esther
E
Cubo
Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.
Glenn T
GT
Stebbins
National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain.
Pablo
P
Martinez-Martin
D001526:Behavioral Symptoms / Q000175:diagnosis / Q000209:etiology / Q000503:physiopathology*; D006801:Humans; D006816:Huntington Disease / Q000150:complications / Q000175:diagnosis / Q000503:physiopathology*; D011569:Psychiatric Status Rating Scales / Q000592:standards*; D012720:Severity of Illness Index
Huntington's disease; anxiety; behavior; depression; irritability; rating scales