of0
 
CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Huntington's Disease
Sub-Domain: Emotional/Behavioral
CRF: Problem Behaviours Assessment HD - Short Version (PBA-s)
Item count: 36 (36 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C17190
Problem Behaviours Assessment - Short Form (PBA-S) - depressed mood severity score
PBASDepMoodSevScore
The score for severity of average depressed mood change over past four weeks as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Depressed Mood Severity
0;1;2;3;4;8;
Absent;Questionable;Low mood is present intermittently but does not interfere with everyday function;Subject feels sad much of the time and takes no pleasure from things that he/she usually enjoys, but may still be able to cheer up sometimes with a big effort;Subject feels sad and utterly miserable all day, takes no pleasure from things that he/she usually enjoys, does not cheer up anytime;Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric values
Rate the severity of participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested Prompts: Start the interview with an open ended question "Have you noticed any change in your mood since the last visit?" and then continue with more specific questioning as follows: In the past four weeks, have you been feeling sad? (or blue, or low in spirits?) Have you found yourself doing something you would ordinarily enjoy and realized you are not having fun? (Evidence of sad mood from behavioral observation includes sad voice or expression, tearfulness) (if yes to either of the above) Has your mood affected your daily activities? Does the depressed mood come and go or does it seem always to be there? Is there any change throughout the day? Can you snap out of it if someone tries to cheer you up?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s depressed mood severity rating
 
Single Pre-Defined Value Selected
       
C17191
Problem Behaviours Assessment - Short Form (PBA-S) - depressed mood frequency score
PBASDepMoodFrqScore
The score for frequency of average depressed mood change over past four weeks as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Depressed Mood Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the frequency of participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested Prompts: Start the interview with an open ended question "Have you noticed any change in your mood since the last visit?" and then continue with more specific questioning as follows: In the past four weeks, have you been feeling sad? (or blue, or low in spirits?) Have you found yourself doing something you would ordinarily enjoy and realized you are not having fun? (Evidence of sad mood from behavioral observation includes sad voice or expression, tearfulness) (if yes to either of the above) Has your mood affected your daily activities? Does the depressed mood come and go or does it seem always to be there? Is there any change throughout the day? Can you snap out of it if someone tries to cheer you up?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s depressed mood frequency rating
 
Single Pre-Defined Value Selected
       
C17192
Problem Behaviours Assessment - Short Form (PBA-S) - depressed mood worst rating score
PBASDepMoodWrstScore
The worst score for severity of Depressive Mood as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Depressed Mood Worst
0;1;2;3;4;8;
Absent;Questionable;Low mood is present intermittently but does not interfere with everyday function;Subject feels sad much of the time and takes no pleasure from things that he/she usually enjoys, but may still be able to cheer up sometimes with a big effort;Subject feels sad and utterly miserable all day, takes no pleasure from things that he/she usually enjoys, does not cheer up anytime;Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric Values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the worst level of severity during the interval since the participant/subject was last seen. Rate 2 if subject can easily enjoy amusing activities or visits from friends. Rate 3 if low mood has definite effect on subject's lifestyle, e.g. unable to enjoy company of friends or amusing diversions. See instrument for additional instructions and scoring guide.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s depressed mood worst rating
 
Single Pre-Defined Value Selected
       
C17193
Problem Behaviours Assessment - Short Form (PBA-S) - suicidal ideation severity score
PBASSucidIdeaSevScore
The severity score for suicidal ideation over past four weeks as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Suicidal Ideation Severity
0;1;2;3;4;8;
Absent;Questionable. also rate 1 if subject plans suicide at a later date when disease is more severe but obtains comfort from this as means to retain control of destiny;Sometimes very pessimistic with fleeting suicidal ideation;Subject has pervasive and distressing feelings of hopelessness and more prolonged or frequent suicidal ideation, but has not yet acted on this in any way;Subject has attempted suicide or has made preparations such as saving up tablets or planning ways to avoid discovery when doing it;Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you felt that life was not worth living or that you wouldn’t care if you didn’t wake in the morning? Have you found yourself thinking that life is not worth living or that you would be better off dead? Have you thought about harming yourself or even making an attempt at suicide? Are you planning to hurt yourself or kill yourself? Have you taken any steps towards carrying out your plan?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s suicidal ideation severity rating
 
Single Pre-Defined Value Selected
       
C17194
Problem Behaviours Assessment - Short Form (PBA-S) - suicidal ideation frequency score
PBASSucidIdeaFreqScore
The frequency score for suicidal ideation over past four weeks as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Suicidal Ideation Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you felt that life was not worth living or that you wouldn’t care if you didn’t wake in the morning? Have you found yourself thinking that life is not worth living or that you would be better off dead? Have you thought about harming yourself or even making an attempt at suicide? Are you planning to hurt yourself or kill yourself? Have you taken any steps towards carrying out your plan?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s suicidal ideation frequency rating
 
Single Pre-Defined Value Selected
       
C17195
Problem Behaviours Assessment - Short Form (PBA-S) - suicidal ideation worst score
PBASSucidIdeaWrstScore
The worst score for suicidal ideation since patient was last seen as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Suicidal Ideation Worst
0;1;2;3;4;8;
Absent;Questionable. also rate 1 if subject plans suicide at a later date when disease is more severe but obtains comfort from this as means to retain control of destiny;Sometimes very pessimistic with fleeting suicidal ideation;Subject has pervasive and distressing feelings of hopelessness and more prolonged or frequent suicidal ideation, but has not yet acted on this in any way;Subject has attempted suicide or has made preparations such as saving up tablets or planning ways to avoid discovery when doing it;Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s suicidal ideation worst rating
 
Single Pre-Defined Value Selected
       
C17196
Problem Behaviours Assessment - Short Form (PBA-S) - anxiety severity score
PBASAnxSevScore
The severity score for anxiety as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Anxiety Severity
0;1;2;3;4;8;
Absent;Questionable, vague unease (also rate 1 if subject's only worry or anxiety is about prognosis of HD);Subject experiences intermittent worry or anxiety, but symptom is not severe enough to cause significant distress or interfere with everyday activities. rate 2 for mild anticipatory anxiety prior to social events or unfamiliar activities e.g. hospital appointments;Unpleasant anxiety is present much of the time, and has a significant impact on subject's behaviour (e.g. avoids going to places or events associated with provoking anxiety);Worry, anxiety or panic are present all the time and have a major impact on subject's lifestyle (e.g. agoraphobia such that subject cannot leave home without an escort);Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric values
Rate the participant's/subject's avearge behavior over the past 4 weeks.If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you found yourself getting worried about things? (Evidence of anxiety includes worrying, panic, feeling frightened or fearful for no apparent reason). Further questions: In the past four weeks, have you found yourself getting worried about things? (Evidence of anxiety includes worrying, panic, feeling frightened or fearful for no apparent reason). Have you been worrying a great deal? What is it like when you worry? Have you often felt on edge, or keyed up, or mentally strained? Have you had difficulty in relaxing? Do your muscles feel tensed up? When people get anxious or panicky they often feel their heart beating fast or they start shaking or sweating or can’t get their breath. Have you had feelings like that?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s anxiety severity rating
 
Single Pre-Defined Value Selected
       
C17197
Problem Behaviours Assessment - Short Form (PBA-S) - anxiety frequency score
PBASAnxFrqScore
The frequency score for anxiety as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Anxiety Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks.If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you found yourself getting worried about things? (Evidence of anxiety includes worrying, panic, feeling frightened or fearful for no apparent reason). Further questions: In the past four weeks, have you found yourself getting worried about things? (Evidence of anxiety includes worrying, panic, feeling frightened or fearful for no apparent reason). Have you been worrying a great deal? What is it like when you worry? Have you often felt on edge, or keyed up, or mentally strained? Have you had difficulty in relaxing? Do your muscles feel tensed up? When people get anxious or panicky they often feel their heart beating fast or they start shaking or sweating or can’t get their breath. Have you had feelings like that?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s anxiety frequency rating
 
Single Pre-Defined Value Selected
       
C17198
Problem Behaviours Assessment - Short Form (PBA-S) - anxiety worst score
PBASAnxWrstScore
The worst score for anxiety since patient was last seen as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Anxiety Worst
0;1;2;3;4;8;
Absent;Questionable, vague unease (also rate 1 if subject's only worry or anxiety is about prognosis of HD);Subject experiences intermittent worry or anxiety, but symptom is not severe enough to cause significant distress or interfere with everyday activities;Unpleasant anxiety is present much of the time, and has a significant impact on subject's behavior (e.g. avoids going to places or events associated with provoking anxiety);Worry, anxiety or panic are present all the time and have a major impact on subject's lifestyle (e.g. agoraphobia such that subject cannot leave home without an escort);Unable to assess because condition too advanced (e.g. mute and immobile);
Numeric values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen. Rate 2 for mild anticipatory anxiety prior to social events or unfamiliar activities e.g. hospital appointments.
© COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s anxiety worst rating
 
Single Pre-Defined Value Selected
       
C17199
Problem Behaviours Assessment - Short Form (PBA-S) - irritability severity score
PBASIrritSevScore
The severity score for irritability as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Irritability Severity
0;1;2;3;4;
No more irritable than the average person;Questionable or trivial. within normal limits but worse than he/she used to be;Definitely more irritable than is reasonable but not to an extent which causes significant problems or distress for other household members.rate 2 if subject appeared to be in a bad mood, but rater considered that subject might have become angry if not treated with tact;Subject very irritable and looses temper over trivial matters. household members have to be careful what they say and do to avoid problems.rate 3 if subject’s appearance and behaviour suggestive of angry mood, such that outbursts would almost certainly have occurred if care had not been taken to placate subject or to keep out of his/her way;Subject very irritable and looses temper without any obvious reason at all. living with him/her is like walking on eggshells;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. This item is used to rate the ease with which the subject looses his/her temper, rather than the degree to which self-control is lost once the subject is angry (the latter is rated in the next item). It should also be used to record irritable moods which might have developed into an angry outburst if the carer had not acted with increased tact or discretion. In the past four weeks, have you been irritable, bad-tempered, moody or ‘cranky’? Do you think you get cross more easily than you used to? (if yes to above) How does this affect the people around you? Do you think they treat you differently when you are like that?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s irritability severity rating
 
Single Pre-Defined Value Selected
       
C17200
Problem Behaviours Assessment - Short Form (PBA-S) - irritability frequency score
PBASIrritFreqScore
The frequency score for irritability frequencies as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Irritability Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. This item is used to rate the ease with which the subject looses his/her temper, rather than the degree to which self-control is lost once the subject is angry (the latter is rated in the next item). It should also be used to record irritable moods which might have developed into an angry outburst if the carer had not acted with increased tact or discretion. In the past four weeks, have you been irritable, bad-tempered, moody or ‘cranky’? Do you think you get cross more easily than you used to? (if yes to above) How does this affect the people around you? Do you think they treat you differently when you are like that?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s irritability frequency rating
 
Single Pre-Defined Value Selected
       
C17201
Problem Behaviours Assessment - Short Form (PBA-S) - irritability worst score
PBASIrritWrstScore
The worst score for irritability over the last four weeks as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Irritability Worst
0;1;2;3;4;
No more irritable than the average person;Questionable or trivial|within normal limits but worse than he/she used to be;Definitely more irritable than is reasonable but not to an extent which causes significant problems or distress for other household members;Subject very irritable and looses temper over trivial matters|household members have to be careful what they say and do to avoid problems;Subject very irritable and looses temper without any obvious reason at all|living with him/her is like walking on eggshells;
Numeric Values
Rate the participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s irritability worst rating
 
Single Pre-Defined Value Selected
       
C17202
Problem Behaviours Assessment - Short Form (PBA-S) - angry aggressive behaviour severity score
PBASAngrAggrBehavSevScore
The severity score for angry or aggressive behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Angry or Aggressive Behaviour Severity
0;1;2;3;4;
Normal;Questionable;Verbal outbursts which are outside socially acceptable limits but do not cause significant problems or distress for other household members. for example, rate 2 if subject becomes angry with self or inanimate objects when confronted with frustrating situations due to disability, such as failure when attempting to rewire a plug;Temper tantrums are severe enough to cause significant distress for other household members and/or practical difficulties caring for the subject. rate 3 when verbal hostility or anger is directed towards another person (e.g. shouting, sarcastic name-calling, use of foul or abusive language). also rate 3 if there are explicit verbal threats of violence to another person, or behaviour causing a justifiable fear of personal violence (e.g. subject approaches too close, raises fist, mild pushing). also rate 3 for violence towards property;Subject has temper tantrums so severe that relationship with carers is compromised, creating risk that subject will be rejected. rate 4 if there has been any kind of actual physical assault (includes pushing, shoving, hitting, biting, scratching, kicking) or threatening behaviour involving weapons;
Numeric values
Rate the participant's/subject's behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you had any emotional or angry outbursts? Have you had times when you lost control of your temper? Have you hit, shoved or thrown things or expressed your temper in a physical way? Have you used threats or hostile words?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s angry or aggressive behaviour severity rating
 
Single Pre-Defined Value Selected
       
C17203
Problem Behaviours Assessment - Short Form (PBA-S) - angry aggressive behaviour frequency score
PBASAngrAggrBehavFrqScore
The frequency score for angry or aggressive behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Angry or Aggressive Behaviour Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. If the symptom has NOT been present in the past 4 weeks, or the rating for the past month does not adequately reflect symptom severity in the interval since the patient’s last assessment, use the third box to rate the WORST level of severity during the interval since patient was last seen. Suggested prompts: In the past four weeks, have you had any emotional or angry outbursts? Have you had times when you lost control of your temper? Have you hit, shoved or thrown things or expressed your temper in a physical way? Have you used threats or hostile words?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disea+V1091se: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s angry or aggressive behaviour frequency rating
 
Single Pre-Defined Value Selected
       
C17204
Problem Behaviours Assessment - Short Form (PBA-S) - angry aggressive behaviour worst score
PBASAngrAggrBehavWrstScore
The worst score for angry or aggressive behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Angry or Aggressive Behaviour Worst
0;1;2;3;4;
Normal;Questionable;Verbal outbursts which are outside socially acceptable limits but do not cause significant problems or distress for other household members;Temper tantrums are severe enough to cause significant distress for other household members and/or practical difficulties caring for the subject;Subject has temper tantrums so severe that relationship with carers is compromised, creating risk that subject will be rejected;
Numeric values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen. Rate 2 for mild anticipatory anxiety prior to social events or unfamiliar activities e.g. hospital appointments. Rate 2 if subject becomes angry with self or inanimate objects when confronted with frustrating situations due to disability, such as failure when attempting to rewire a plug. Rate 3 when verbal hostility or anger is directed towards another person (e.g. shouting, sarcastic name-calling, use of foul or abusive language). Also rate 3 if there are explicit verbal threats of violence to another person, or behavior causing a justifiable fear of personal violence (e.g. subject approaches too close, raises fist, mild pushing). Also rate 3 for violence towards property. Rate 4 if there has been any kind of actual physical assault (includes pushing, shoving, hitting, biting, scratching, kicking) or threatening behavior involving weapons.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s angry or aggressive behaviour worst rating
 
Single Pre-Defined Value Selected
       
C17205
Problem Behaviours Assessment - Short Form (PBA-S) - lack initiative apathy severity score
PBASLckInitApathSevScore
The severity score for lack of initiative (apathy) as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Lack of Initiative (Apathy) Severity
0;1;2;3;4;8;9;
Symptom absent;Questionable;Subject no longer tries new things. May need gentle prompting to initiate hobbies or pastimes which he/she usually enjoys, makes less effort to keep up with friends and relatives, tends to put off household tasks which were previously part of normal daily routine and may need gentle prompting to do these things;Needs quite overt prompting to take part in hobbies or pastimes which he/she used to enjoy, or to carry out routine daily household tasks, makes little or no effort to keep up with friends and leaves it to others to initiate any social contacts, able to take part in (and apparently enjoy) conversation but tends to follow and is less likely to initiate a change of subject.;No longer performs any household tasks, even if prompted repeatedly, never initiates activities, and displays no interest in hobbies or pastimes, markedly impoverished speech, rarely initiates new topics of conversation except in relation to own needs, active choices limited to selecting TV programmes to watch and perhaps switching on or changing channel to do this);Unable to assess because condition too advanced (e.g. mute and immobile);Missing data;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. Suggested prompts: In the past four weeks, have you found that you have lost interest in things that used to be important to you? Are you just as interested as always in trying new things, starting new projects? Do you have to be pushed to get started on chores that need doing? Do you leave it to friends to take the initiative for organizing social activities? Do you sit around a lot doing nothing?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s lack of initiative (apathy) severity rating
 
Single Pre-Defined Value Selected
       
C17206
Problem Behaviours Assessment - Short Form (PBA-S) - lack initiative apathy frequency score
PBASLckInitApathFreqScore
The frequency score for lack of initiative (apathy) as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Lack of Initiative (Apathy) Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. In the past four weeks, have you found that you have lost interest in things that used to be important to you? Are you just as interested as always in trying new things, starting new projects? Do you have to be pushed to get started on chores that need doing? Do you leave it to friends to take the initiative for organizing social activities? Do you sit around a lot doing nothing?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s lack of initiative (apathy) frequency rating
 
Single Pre-Defined Value Selected
       
C17207
Problem Behaviours Assessment - Short Form (PBA-S) - lack initiative apathy worst score
PBASLckInitApathWrstScore
The worst score for lack of initiative (apathy) as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Lack of Initiative (Apathy) Worst
0;1;2;3;4;8;9;
Symptom absent;Questionable;Subject no longer tries new things|may need gentle prompting to initiate hobbies or pastimes which he/she usually enjoys|makes less effort to keep up with friends and relatives|tends to put off household tasks which were previously part of normal daily routine and may need gentle prompting to do these things;Needs quite overt prompting to take part in hobbies or pastimes which he/she used to enjoy, or to carry out routine daily household tasks|makes little or no effort to keep up with friends and leaves it to others to initiate any social contacts|able to take part in (and apparently enjoy) conversation, but tends to follow and is less likely to initiate a change of subject;No longer performs any household tasks, even if prompted repeatedly.never initiates activities, and displays no interest in hobbies or pastimes.markedly impoverished speech, rarely initiates new topics of conversation except in relation to own needs.active choices limited to selecting TV programmes to watch, and perhaps switching on or changing channel to do this);Unable to assess because condition too advanced (e.g. mute and immobile);Absence of reliable information;
Numeric values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen. Rate 2 for mild anticipatory anxiety prior to social events or unfamiliar activities e.g. hospital appointments. This item will usually be rated 9 (data missing) in the absence of a reliable informant.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s lack of initiative (apathy) worst rating
 
Single Pre-Defined Value Selected
       
C17208
Problem Behaviours Assessment - Short Form (PBA-S) - perseverative thinking behavior severity score
PBASPersevThnkBehavSevScore
The severity score for Perseverative Thinking or Behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Perseverative Thinking or Behaviour Severity
0;1;2;3;4;8;9;
Symptom absent;Questionable;Mild perseverative behaviours or abnormal preoccupations are present but do not interfere with everyday life or cause significant distress for subject or carers;Abnormal preoccupations or repetitive behaviours occupy a significant proportion of subject's attention and cause distress for subject or practical problems for carers;Abnormal preoccupations occupy most of subject's attention for several days at a time, causing major problems or distress for subject and carers, or subject cannot be diverted from repetitive behaviours (pacing, smoking, repeatedly visiting the toilet) which interfere significantly with everyday care;Unable to assess because condition too advanced (e.g. mute and immobile);Absence of a reliable informant;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. Suggested prompts: In the past four weeks, have you found yourself getting stuck on certain ideas or actions? Have your family or friends complained that you are getting obsessed about something, or going on about it more than you should, or doing something over and over again? rate 2 if carer reports that subject tends to come out with comments which refer to an earlier topic of conversation, or when rater observes perseverative phenomena during examination (e.g. continues tandem walking after test completed). Rate 3 if carers report that subject will not let matter drop after an argument, and keeps returning to the same contentious issue all day, or has repetitive behaviours (see below) which cause some interference with everyday care
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s perseverative thinking or behaviour severity rating
 
Single Pre-Defined Value Selected
       
C17209
Problem Behaviours Assessment - Short Form (PBA-S) - perseverative thinking behavior frequency score
PBASPersevThnkBehavFrqScore
The frequency score for Perseverative Thinking or Behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Perseverative Thinking or Behaviour Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. In the past four weeks, have you found yourself getting stuck on certain ideas or actions? Have your family or friends complained that you are getting obsessed about something, or going on about it more than you should, or doing something over and over again?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s perseverative thinking or behaviour frequency rating
 
Single Pre-Defined Value Selected
       
C17210
Problem Behaviours Assessment - Short Form (PBA-S) - perseverative thinking behaviour worst score
PBASPersevThnkBehavWrstScore
The worst score for Perseverative Thinking or Behaviour as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Perseverative Thinking or Behaviour Worst
0;1;2;3;4;8;9;
Symptom absent;Questionable;Mild perseverative behaviours or abnormal preoccupations are present but do not interfere with everyday life or cause significant distress for subject or carers;Abnormal preoccupations or repetitive behaviours occupy a significant proportion of subject's attention and cause distress for subject or practical problems for carers;Abnormal preoccupations occupy most of subject's attention for several days at a time, causing major problems or distress for subject and carers, or subject cannot be diverted from repetitive behaviours (pacing, smoking, repeatedly visiting the toilet) which interfere significantly with everyday care;Unable to assess because condition too advanced (e.g. mute and immobile);Absence of a reliable informant;
Numeric Values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen. Rate 2 if carer reports that subject tends to come out with comments which refer to an earlier topic of conversation, or when rater observes perseverative phenomena during examination (e.g. continues tandem walking after test completed). Rate 3 if carers report that subject will not let matter drop after an argument, and keeps returning to the same contentious issue all day, or has repetitive behaviours (see below) which cause some interference with everyday care. This item will usually be rated 9 (data missing) in the absence of a reliable informant.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s perseverative thinking or behaviour worst rating
 
Single Pre-Defined Value Selected
       
C17211
Problem Behaviours Assessment - Short Form (PBA-S) - obsessive compulsive behavior severity score
PBASObsCompBehvSevScore
The severity score for Obsessive-Compulsive Behaviours as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Obsessive-Compulsive Behaviours Severity
0;1;2;3;4;
Symptom absent;Questionable or trivial;Obsessional thoughts or mild compulsive behaviours which do not interfere with everyday life or cause subject significant distress;Obsessive-compulsive behaviours are present to a degree which interferes with everyday life or causes significant distress for subject;Obsessional phenomena cause serious distress, are time consuming (>1 hour/day) or significantly interfere with the person’s normal routine, occupational functioning or usual social activities or relationships;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. Obsessive-compulsive phenomena diagnosed according to DSM-IV: • recurrent or persistent thoughts, impulses or images that are experienced, at some time during the disturbance, as intrusive and inappropriate, and that cause marked anxiety or distress • The thoughts, impulses or images are not simply excessive worries about real-life problems • The person attempts to ignore or suppress such thoughts, impulses or images, or to neutralise them with some other thought or action • The person recognises that the obsessional thoughts, impulses or images are a product of his or her own mind (not imposed from without) • Repetitive behaviours (e.g. hand-washing, ordering, checking) or mental acts (e.g. praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to rules that must be applied rigidly • The behaviours or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviours or mental acts are not connected in any realistic way with what they are designed to neutralise, or are clearly excessive Rate 2 if subject has mild obsessive-compulsive traits such as double checking (a small number of times) that doors are locked or ashtrays empty at night. Rate 3 if subject displays mild ritualistic behaviours such as hand-washing, turning lights on and off repetitively or ‘evening-up’ after touching things by touching with the other hand too
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s obsessive-compulsive behaviours severity rating
 
Single Pre-Defined Value Selected
       
C17212
Problem Behaviours Assessment - Short Form (PBA-S) - obsessive compulsive behavior frequency score
PBASObsCompBehvFrqScore
The frequency score for Obsessive-Compulsive Behaviours as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Obsessive-Compulsive Behaviours Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. Obsessive-compulsive phenomena diagnosed according to DSM-IV.
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s obsessive-compulsive behaviours frequency rating
 
Single Pre-Defined Value Selected
       
C17213
Problem Behaviours Assessment - Short Form (PBA-S) - obsessive compulsive behavior worst score
PBASObsesCompBehvWrstScore
The worst score for Obsessive-Compulsive Behaviours as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Obsessive-Compulsive Behaviours Worst
0;1;2;3;4;
Symptom absent;Questionable or trivial;Obsessional thoughts or mild compulsive behaviours which do not interfere with everyday life or cause subject significant distress;Obsessive-compulsive behaviours are present to a degree which interferes with everyday life or causes significant distress for subject;Obsessional phenomena cause serious distress, are time consuming (>1 hour/day) or significantly interfere with the person’s normal routine, occupational functioning or usual social activities or relationships;
Numeric Values
Score "WORST" box if the rating for the past month does not adequately reflect symptom severity in the interval since the participant's/subject's last assessment, rate the WORST level of severity during the interval since the participant/subject was last seen. Rate 2 if subject has mild obsessive-compulsive traits such as double checking (a small number of times) that doors are locked or ashtrays empty at night. Rate 3 if subject displays mild ritualistic behaviors such as hand-washing, turning lights on and off repetitively or 'evening-up' after touching things by touching with the other hand too.;
© COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s obsessive-compulsive behaviours worst rating
 
Single Pre-Defined Value Selected
       
C17214
Problem Behaviours Assessment - Short Form (PBA-S) - delusions paranoid thinking severity score
PBASDelusParanThnkSevScore
Scores for severities of Delusions/Paranoid Thinking as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Delusions/Paranoid Thinking Severity
0;1;2;3;4;8;9;
Symptom absent;Questionable or trivial;Overvalued ideas (not amounting to true delusions) are present for some part of the day but do not affect subject’s behaviour;Overvalued ideas are present for much of the day, and subject behaves as if these beliefs were true, although he/she can be persuaded (with difficulty) that he/she is mistaken;Delusions: false beliefs, held with unshakeable conviction, which are not shared by other members of subject's social and cultural group and have been present continuously for at least 7 days;Unable to assess because condition too advanced (e.g. mute and immobile);Absence of a reliable informant;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. Suggested Prompts: Any abnormal beliefs, including unfounded jealous suspicions and accusations of infidelity, should be rated here. I am going to ask you about unusual experiences that people sometimes have. In the past four weeks, has it ever seemed like people are out to get you or perhaps controlling you? Has it seemed like you have special powers or importance, or that books, TV and radio statements are referring to you? Are there any other unusual things you experience that I have not asked you about?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s delusions/paranoid thinking severity rating
 
Single Pre-Defined Value Selected
       
C17215
Problem Behaviours Assessment - Short Form (PBA-S) - delusions paranoid thinking frequency score
PBASDelusParanThnkFrqScore
The frequency score for Delusions/Paranoid Thinking as part of the Problem Behaviours Assessment - Short Form (PBA-S).
Delusions/Paranoid Thinking Frequency
0;1;2;3;4;9;
Never/almost never;Seldom (less than once/week);Sometimes (up to 4 times a week);Frequently (most days/5,6 or 7 times a week);Daily/almost daily for most (or all) of day;Not known or not applicable;
Numeric values
Rate the participant's/subject's average behavior over the past 4 weeks. suggested prompts: Any abnormal beliefs, including unfounded jealous suspicions and accusations of infidelity, should be rated here. I am going to ask you about unusual experiences that people sometimes have. In the past four weeks, has it ever seemed like people are out to get you or perhaps controlling you? Has it seemed like you have special powers or importance, or that books, TV and radio statements are referring to you? Are there any other unusual things you experience that I have not asked you about?
COPYRIGHT University of Ulm, Faculty of Medicine, EHDN Behavioural Phenotype Working Group (Version 1.4, February 2007). For enquiries, contact permissions@euro-hd.net A paper describing the reliability of the PBA-s (in English, Dutch and French) based on data from the TRACK-HD study is in preparation and will be submitted shortly. Craufurd D, Thompson J, Snowden JS. Behavioural changes in Huntington's disease: the Problem Behaviours Assessment. Neuropsychiatry, Neuropsychology and Behavioural Neurology 2001; 14 (4): 219-226.
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Problem Behaviours Assessment HD - Short Version (PBA-s)
Emotional/Behavioral
Outcomes and End Points
PBA-s delusions/paranoid thinking frequency rating
 
Single Pre-Defined Value Selected
       
11-23-2017
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