TS Clinical Rating Scales

Transcription

1 European Network for the Study of Gilles de la Tourette Syndrome TS Clinical Rating Scales Tara Murphy, Zsanett Tárnok, Cara Verdellen & Jolande van de Griendt June 7th 2012 Training School, Catania, June 2012

2 Yale Global Tic Severity Scale (YGTSS; Leckman et al., 1989)

3 General description Overview of each section Individual item content and severity Psychometric properties Tips for administration

4 YGTSS Is a clinician rated scale commonly used in clinical trials Golden Standard for rating tic severity Good validity & interrater agreement Is comprised of three main parts: Symptom checklist Severity Rating of motor and vocal tics Impairment Rating

5 The YGTSS assesses symptoms over the past week (and also assesses symptoms from the past) The clinician-administered measure can be conducted with the parent and child together or separately The clinician is given latitude to weigh information from multiple respondents and adjust ratings based on behavioral observations, clinical judgement and other sources of information

6 To start off: define tics Determine that the child understands the term tics Explain motor vs vocal Introduce simple vs complex tics Provide examples Provide the child permission to tic Point out movements/sounds that you think are tics, check if they are

7 Symptom Checklist Review common tics Simple motor Complex motor Simple vocal Complex vocal Check symptoms according to their current presence and past present other spaces are available to indicate other tics Other possibilities: - Indicate when the tic first appeared - Indicate if the tic was (n)ever present - Indicate whether you can validate the tic (saw it)

8 Simple motor tics Simple motor tic: Sudden, brief, meaningless movement Recurs in bouts One muscle group Examples: excessive eye blinking, nose movements, head shaking, shoulder jerking

9 Complex motor tics Complex motor tic: Sudden, stereotyped, semi-purposeful movement More than one muscle group Movement can last longer A constellation of movements as facial grimacing together with body movements Examples: touching things, obscene gestures, facial grimacing together with body movements, at the same time sticking out the tongue, head shaking and grimacing, directly followed by a vocal noise

10 Simple vocal tics Simple vocal tic: Fast, meaningless sounds Examples: coughing, throat clearing, sniffing, whistling, animal noises

11 Complex vocal tics Complex vocal tic: Language, words, sentences Examples: Syllables, words, coprolalia, echolalia, palilalia, but also blocking or disinhibited speech

12 Severity rating Administer as a semi structured interview Along five dimensions Number Frequency Intensity Complexity Interference Each dimension is scored on a six-point scale (0-5), for motor and vocal tics separately This will lead to a subtotal of maximum 25 points for motor tics and maximum 25 for vocal tics

13 Severity rating An impairment rating is added to obtain a global severity score (0-50) Total score varies between 0 and 100, higher scores indicate more severe tics

14 YGTSS scoring Motor Vocal Total scores Number Frequency Intensity Complexity Interference Total motor / Total vocal Impairment 0-50 Global YGTSS score 0-100

15 Number Motor Vocal None 0 Single tic 1 Multiple discrete tics (2-5) 2 Multiple discrete tics (>5) 3 Multiple discrete tics plus as least one orchestrated pattern of multiple simultaneous or sequential tics where it is difficult to distinguish discrete tics. 4 Multiple discrete tics plus several (>2) orchestrated paroxysms of multiple simultaneous or sequential tics that where it is difficult to distinguish discrete tics 5

16 Number Ìtem content: How many types of tics were seen during the last week (not to be confused with how many tics!) 0 = No tics Additional points: 1,2,3= simple tics 4,5 =require an orchestrated pattern of tics, difficult to distinguish tics from each other When a paroxysm of tics includes both motor and vocal tics score it under the predominant topography and be consistent. Do not score in both! Remember: it s not about the complexity of tics (this is criterium D), but about the number of different simple and complex tics

17 Frequency Motor Vocal NONE No evidence of specific tic behaviors 0 RARELY Specific tic behaviors have been present during previous week. These behaviors occur infrequently, often not on a daily basis. If bouts of tics occur, they are brief and uncommon. OCCASIONALLY Specific tic behaviors are usually present on a daily basis, but there are long tic-free intervals during the day. Bouts of tics may occur on occasion and are not sustained for more than a few minutes at a time. FREQUENTLY Specific tic behaviors are present on a daily basis. Tic free intervals as long as 3 hours are not uncommon. Bouts of tics occur regularly but may be limited to a single setting. ALMOST ALWAYS Specific tic behaviors are present virtually every waking hour of every day, and periods of sustained tic behaviors occur regularly. Bouts of tics are common and are not limited to a single setting. ALWAYS Specific tic behaviors are present virtually all the time. Tic free intervals are difficult to identify and do not last more than 5 to10 minutes at most

18 Frequency Item content: how often did your tics occur during the last week? 0 = No tics Follow up questions Do you have at least one motor tic every day? How about every hour, when awake on average? How about every five minutes? Look out for If the reported frequency varies from what you observe ask about the discrepancy It is not uncommon to tic more/less during discussion of tics

19 Intensity Motor Vocal ABSENT 0 MINIMAL INTENSITY Tics not visible or audible (based solely on patient's private experience) or tics are less forceful than comparable voluntary actions and are typically not noticed because of their intensity. 1 MILD INTENSITY Tics are not more forceful than comparable voluntary actions or utterances and are typically not noticed because of their intensity. 2 MODERATE INTENSITY Tics are more forceful than comparable voluntary actions but are not outside the range of normal expression for comparable voluntary actions or utterances. They may call attention to the individual because of their forceful character. MARKED INTENSITY Tics are more forceful than comparable voluntary actions or utterances and typically have an "exaggerated" character. Such tics frequently call attention to the individual because of their forceful and exaggerated character. SEVERE INTENSITY Tics are extremely forceful and exaggerated in expression. These tics call attention to the individual and may result in risk of physical injury (accidental, provoked, or self-inflicted) because of their forceful expression

20 Intensity Item content How forceful or strong are your tics? How noticeable are your tics because of their intensity? 0 = No tics Additional points Noticeability is due to INTENSITY or STRENGHT, not frequency or complexity! Follow up questions You can ask how much others notice the tics (aside from family members and adults who know the child well) Use your own observation How exaggerated are the tics? Do they turn heads in public? Does it lead to pain/ wounds?

21 Complexity Motor Vocal NONE If present, all tics are clearly "simple" (sudden, brief, purposeless) in character. 0 BORDERLINE Some tics are not clearly "simple" in character. MILD Some tics are clearly "complex" (purposive in appearance) and mimic brief "automatic" behaviors, such as grooming, syllables, or brief meaningful utterances such as "ah huh," "hi" that could be readily camouflaged. MODERATE Some tics are more "complex" (more purposive and sustained in appearance) and may occur in orchestrated bouts that would be difficult to camouflage but could be rationalized or "explained" as normal behavior or speech (picking, tapping, saying "you bet" or "honey", brief echolalia). MARKED Some tics are very "complex" in character and tend to occur in sustained orchestrated bouts that would be difficult to camouflage and could not be easily rationalized as normal behavior or speech because of their duration and/or their unusual, inappropriate, bizarre or obscene character (a lengthy facial contortion, touching genitals, echolalia, longer bouts of saying "what do you mean" repeatedly, or saying "fu" or "sh"). SEVERE Some tics involve lengthy bouts of orchestrated behavior or speech that would be impossible to camouflage or successfully rationalize as normal because of their duration and/or extremely unusual, inappropriate, bizarre or obscene character (lengthy displays or utterances often involving copropraxia, self-abusive behavior or coprolalia)

22 Complexity Item content How involved or orchestrated are the tics 0= no tics or simple tics only! Additional points: Usually rated based on observations and symptom checklist When a paroxysm of tics includes both phonic and motor tics score it under the predominant topography and be consistent. Do not score in both! Follow up questions: If necessary ask about how hard they are to camouflage/how much they stand out due for: Duration Bizarre or obscene character Inappropriateness Unusual nature

23 Interference Motor Vocal NONE 0 MINIMAL When tics are present, they do not interrupt the flow of behavior or speech. MILD When tics are present, they occasionally interrupt the flow of behavior or speech. MODERATE When tics are present, they frequently interrupt the flow of behavior or speech MARKED When tics are present, they frequently interrupt the flow of behavior or speech, and they occasionally disrupt intended action or communication. 4 SEVERE When tics are present, they frequently disrupt intended action or communication. 5

24 Interference Item content: How do tics get in the way 0 = no tics present; 1 = tics present but don t interfere Additional points: The key is the extent to which tics disrupt planned actions or speech First establish if tics do interfere, then rate the extent Use observations

25 Impairment NONE 0 MINIMAL Tics associated with subtle difficulties in self-esteem, family life, social acceptance, or school or job functioning (infrequent upset or concern about tics vis a vis the future, periodic, slight increase in family tensions because of tics, friends or acquaintances may occasionally notice or comment about tics in an upsetting way). MILD Tics associated with minor difficulties in self-esteem, family life, social acceptance, or school or job functioning MODERATE Tics associated with some clear problems in self-esteem family life, social acceptance, or school or job functioning (episodes of dysphoria, periodic distress and upheaval in the family, frequent teasing by peers or episodic social avoidance, periodic interference in school or job performance because of tics). 30 MARKED Tics associated with major difficulties in self-esteem, family life, social acceptance, or school or job functioning. 40 SEVERE Tics associated with extreme difficulties in self-esteem, family life, social acceptance, or school or job functioning (severe depression with suicidal ideation, disruption of the family (separation/divorce, residential placement), disruption of social tics - severely restricted life because of social stigma and social avoidance, removal from school or loss of job). 50

26 Impairment Item content How much do tics affect your life? 0=no impairment (followed by subtle, minor, clear, major, extreme difficulties) Queries How do tic affect your: Self-esteem School, grades Relationships with friends, family Social acceptance, involvement, avoidance Additional points Impairment rated as a single item (not specified for motor/vocal, but rating the whole tic package concurrently) 0-50 scale

27 Administration: Quick Facts Semi structured and clinician-administered This means you use the questions as your guide and ask follow up questions as needed The professional has the final judgement on ratings The YGTSS takes about minutes per assessment, quicker once the professional AND the patient have more experience with it. Parents are the primary informants but the child can be included as appropriate observation is helpful

28 Pitfalls & tips (or how to deal with.. ) A complex tic with a motor ánd vocal elements should be scored only once (as motor or vocal tic, depending on which is the most prominent) Do not entangle number and complexity One can show tics constantly, and have a low total score ór show a complex tic, infrequently, and have a high total score No clear boundaries between severity ratings Parents may report differently from children (e.g., intensity)

29 To make it even more difficult... Differentiate complex tics from multiple single tics Differentiate normal behaviour from tics (e.g., coughing, eye blinking, lip licking) Differentiate hyperactive behaviour from tics And stay consistent!

30 And now... So far the YGTSS theory NOW PRACTICE!