NINDS CDE Huntington's Disease Behavioral Psychology Subgroup ...

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NINDS CDE Huntington’s Disease Behavioral Psychology SubgroupRecommended CDE’s Page 2 of 2Type of Instrument Instrument Core? CommentsObsessive/CompulsivePerseverative1) Padua-Inventory-OCD-Wash-U-Revised2) Florida ObsessiveCompulsive Inventory1) No2) NoIrritability 1) Irritability Scale 1) Core only if Irritability ismain focus.Sleep1)Scale for Outcomes of 1) NoParkinson’s disease- Sleep2) Pittsburgh Sleep Quality 2) NoIndex3) Cambridge Brain Repair 3) NoCentre (BRC) HD SleepQuestionnaireThere are no good scales for the type of O/C and Perseverativesymptoms seen in HD- this is an area of research need.This is the only irritability scale with significant data in HDpopulations to support its use.There are no good scales for evaluation of sleep disorders inHD. This is an area of research need.Psychosis None There are no good scales for psychotic symptoms seen in HD,this is an area of research need.HD Version 1.0
Description of Apathy Evaluation Scale forHD Common Data ElementsInstrument Name:Classification:Short Description ofInstrument:ScoringMeasurementsPsychometricPropertiesApathy Evaluation ScaleCoreSummary/ Overview of Instrument: Semi-structures interview with 18 questionsassessing apathy in the past four weeks. This scale was originally designed forpatients with Parkinson’s disease or Alzheimer’s disease.Construct measured: ApathyGeneric vs. disease specific: GenericIntended use of instrument/ purpose of tool: Assessment of severity of apathyMeans of administration: Paper and pencilLocation of administration: Clinic or homeIntended respondent: Patient/self (AES-S), Informant (AES-I) and Clinician(AES-C) version# of items: 18# of subscales and names of sub-scales: NoneScoring: Rating of each item is based on a semi-structured interview. Theinterview should begin with a description of the subject’s interest, activities anddaily routine. The items should be anwered based on the subject’s thoughts,emotions, and actions; based on both verbal and non-verbal information of thepast 4 weeks. For each item ratings should be judged: 4 possible responses foreach question: ‘not at all’, ‘slightly’, ‘somewhat’, ‘a lot’.Standardization of scores to a reference population (z scores, T scores, etc):Not availableIf scores have been standardized to a reference population, indicate frameof reference for scoring (general population, HD subjects, other disease groups,etc). Not availableType of scale used to describe individual items and total/subscale scores:ContinuousReliability:Test-retest or intra-interview (within rater) reliability: AES-S = 0.76; AES-I = 0.94;AES-C = 0.88Inter-interview (between-rater) reliability (as applicable): Inter-rater reliability wasonly tested for the AES-C and w as found to be go od (intraclass correlationcoefficient = 0.94 (Marin, 1991).Internal consistency: Coefficient alpha: AES-S = 0.86; AES-I = 0.94; AES-C =0.90HD Version 1.0 Page 1 of 2
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Page 9: Description of Apathy Scale forHD C
Page 12 and 13: Description of Cambridge Brain Repa
Page 16 and 17: Description of Frontal Systems Beha
Page 18 and 19: Description of Frontal Systems Beha
Page 20: Description of Hospital and Anxiety
Page 23: Description of Padua Inventory- Was
Page 26 and 27: Description of Pittsburgh Sleep Qua
Page 28 and 29: Description of Problem Behaviours A
Page 30 and 31: Description of Problem Behaviours A
Page 32 and 33: Description of Scale for Outcomes o

NINDS CDE Huntington's Disease Behavioral Psychology Subgroup ...

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