Child 9 - 11 Redcap copy

Att 11_Child 9-11 Forms in REDCap.pdf

[NCBDDD] Documenting Outcomes Associated with Persistent Tic Disorders (Including Tourette Syndrome) in Children, Adolescents, and Young Adults Through Surveillance

Child 9 - 11 Redcap copy

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Page 1

Child 9-11

Timestamp

__________________________________

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
 
Public reporting burden of this collection of information is estimated to average 30 minutes, including the time for
reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing
and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to
respond to a collection of information unless it displays a currently valid OMB control number. Send comments
regarding this burden estimate or any other aspect of this collection of information, including suggestions for
reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS H21-8, Atlanta, Georgia
30333; ATTN: PRA (0920-24EG).
Completing the survey is voluntary. If you are not comfortable answering a question, just leave it blank. 
Please complete the following questions about yourself.
How old are you, in years?

__________________________________

If you are not between the ages of 9-11 years, please request an alternative form from the project staff.

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Page 2

Below is a list of sentences that describe how people feel. Read each phrase and decide if it is
"Not True or Hardly Ever True" or "Somewhat True or Sometimes True" or "Very True or Often
True" for you. Then for each sentence, select the response that seems to describe you for the
last 3 months.
When I feel frightened, it is hard to breathe.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I get headaches when I am at school.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I don't like to be with people I don't know well.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I get scared if I sleep away from home.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about other people liking me.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel like passing out.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am nervous.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I follow my mother or father wherever they go.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

People tell me that I look nervous.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I feel nervous with people I don't know well.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I get stomachaches at school.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel like I am going crazy.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about sleeping alone.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

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Page 3

I worry about being as good as other kids.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel like things are not
real.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I have nightmares about something bad happening to my
parents.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about going to school.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, my heart beats fast.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I get shaky.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I have nightmares about something bad happening to me.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about things working out for me.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I sweat a lot.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am a worrier.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I get really frightened for no reason at all.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am afraid to be alone in the house.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

It is hard for me to talk with people I don't know
well.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel like I am choking.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

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Page 4

People tell me that I worry too much.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I don't like to be away from my family.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am afraid of having anxiety (or panic) attacks.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry that something bad might happen to my parents.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I feel shy with people I don't know well.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about what is going to happen in the future.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel like throwing up.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about how well I do things.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am scared to go to school.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I worry about things that have already happened.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

When I get frightened, I feel dizzy.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I feel nervous when I am with other children or adults
and I have to do something while they watch me (for
example: read aloud, speak, play a game, play a
sport.)

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I feel nervous when I am going to parties, dances, or
any place where there will be people that I don't know
well.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

I am shy.

Not true or hardly ever true
Somewhat true or sometimes true
Very true or often true

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Page 5

Did anyone help you complete this survey?

Yes, someone helped me, but I completed most of
the survey on my own.
Yes, someone helped me with all or most of the
survey.
No, I completed the survey on my own.

You skipped some questions on this page. Please review and complete those questions before going to the next
page. If you intentionally skipped the questions, you can go to the next page.

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Page 1

ASQ
Please complete the survey below.Thank you!

Medical Record Number

Timestamp

__________________________________

__________________________________

Please ask the following questions only for those ages 9 and up.
Note to person administering the ASQ: Please provide the following information to the respondent before asking the
questions.
This survey asks about mental health and emotional well-being. If you answer that you have had suicidal thoughts or
behaviors, or purposely tried to hurt yourself, we may inform your doctor or other clinic staff. This would be to ensure
your safety and provide you with support and care.
By completing this survey, you accept and consent to this protocol. If you have concerns or need immediate help,
please tell the clinic staff.
1)  In the past few weeks, have you wished you were
dead?

Yes
No
Refused to answer

2) In the past few weeks, have you felt that you or
your family would be better off if you were dead?

Yes
No
Refused to answer

3) In the past week, have you been having thoughts
about killing yourself?

Yes
No
Refused to answer

4) Have you ever tried to kill yourself?

Yes
No
Refused to answer

4a) How?
__________________________________________
4b) When?
__________________________________________
The patient answered "No" to questions 1 through 4; therefore, screening is complete, and it is not necessary to ask
question #5. No intervention is necessary; however, clinical judgment can always override a negative screen.
Do you want to ask the patient question #5 (Are you
having thoughts of killing yourself right now?) or
finish the ASQ?

Ask question #5
Finish the ASQ

This patient is considered a positive screen. Ask question #5 to assess acuity.
5) Are you having thoughts of killing yourself right
now?

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Yes
No

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5b) Please describe:

__________________________________

Patient is acute positive screen (imminent risk identified)
Patient requires a STAT safety/full mental health evaluation. Patient cannot leave until evaluated for safety.
Keep patient in sight. Remove all dangerous objects from room. Alert physician or clinician responsible for patient's
care.
Provide resources to all patients: 988 Suicide and Crisis Lifeline, 988 (call, text), 
https://988lifeline.org/
Patient is non-acute positive screen (potential risk identified).
Patient requires a brief suicide safety assessment to determine if a full mental health evaluation is needed. If a
patient (or parent/guardian) refuses the brief assessment, this should be treated as an "against medical advice"
(AMA) discharge.
Alert physician or clinician responsible for patient's care.
Provide resources to all patients: 988 Suicide and Crisis Lifeline, 988 (call, text), 
https://988lifeline.org/
Initials of person (staff/professional) completing ASQ

Optional: Provide any comments on clinical information
entered on this form. Please do not use any patient
identifiers.

__________________________________

__________________________________________

Overview of ASQ - this information is included above, within skip logic, and only included here for reference.
If patient answers "No" to all questions 1 through 4, screening is complete (not necessary to ask question #5). No
intervention is necessary (*Note: Clinical judgment can always override a negative screen).
If patient answers "Yes" to any of questions 1 through 4, or refuses to answer, they are considered a positive screen.
Ask question #5 to assess acuity.
"Yes" to question #5 = acute positive screen (imminent risk identified)
Patient requires a STAT safety/full mental health evaluation. Patient cannot leave until evaluated for safety.
Keep patient in sight. Remove all dangerous objects from room. Alert physician or clinician responsible for patient's
care.
"No" to question #5 (but "Yes" or "Refused" to one of questions 1-4) = non-acute positive screen (potential risk
identified)
Patient requires a brief suicide safety assessment to determine if a full mental health evaluation is needed. If a
patient (or parent/guardian) refuses the brief assessment, this should be treated as an "against medical advice"
(AMA) discharge.
Alert physician or clinician responsible for patient's care.
Provide Resources to All Patients: 
•988 Suicide and Crisis Lifeline, Call or Text 988
•Visit https://988lifeline.org to chat

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Page 1

YGTSS
Please complete the survey below.Thank you!

Medical Record Number

Timestamp

__________________________________

__________________________________

This instrument to be completed by trained professional.
Motor Tics
Age of first motor tics, in years

Describe first motor tic:

Was tic onset sudden or gradual?

Age of worst motor tics, in years?

__________________________________

__________________________________

__________________________________

__________________________________

Motor Tic Symptom Checklist
Please select if the patient currently (during the past week) has each tic OR if they ever (but not currently) had the
tic. State age of onset (in years) if patient has had this behavior.
The patient has experienced, or others have noticed, involuntary and apparently purposeless bouts of:
eye movements
eye blinking, squinting, a quick turning of the eyes,
rolling of the eyes to one side, or opening eyes wide
very briefly.
What was the age of onset of this behavior?

eye gestures such as looking surprised or quizzical,
or looking to one side for a brief period of time, as
if s/he heard a noise.
What was the age of onset of this behavior?

nose, mouth, tongue movements, or facial grimacing
nose twitching, biting the tongue, chewing on the lip
or licking the lip, lip pouting, teeth baring, or
teeth grinding.
What was the age of onset of this behavior?

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Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________

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Page 2

broadening the nostrils as if smelling something,
smiling, or other gestures involving the mouth,
holding funny expressions, or sticking out the tongue.
What was the age of onset of this behavior?

head jerks/movements
touching the shoulder with the chin or lifting the
chin up.
What was the age of onset of this behavior?

throwing the head back, as if to get hair out of the
eyes.
What was the age of onset of this behavior?

shoulder jerks/movements
jerking a shoulder.
What was the age of onset of this behavior?

shrugging the shoulder as if to say "I don't know."

What was the age of onset of this behavior?

arm or hand movements
quickly flexing the arms or extending them, nail
biting, poking with fingers, or popping knuckles.
What was the age of onset of this behavior?

passing hand through the hair in a combing like
fashion, or touching objects or others, pinching, or
counting with fingers for no purpose, or writing
tics, such as writing over and over the same letter
or word, or pulling back on the pencil while writing.
What was the age of onset of this behavior?

leg, foot, or toe movements
kicking, skipping, knee-bending, flexing or extension
of the ankles; shaking, stomping or tapping the foot.

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Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

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Page 3

What was the age of onset of this behavior?

taking a step forward and two steps backward,
squatting, or deep knee-bending.
What was the age of onset of this behavior?

abdominal/trunk/pelvis movements
tensing the abdomen, tensing the buttocks.
What was the age of onset of this behavior?

other simple motor tics.

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

Please write example(s):
__________________________________________
What was the age of onset of this behavior?

Other complex motor tics
touching
What was the age of onset of this behavior?

tapping

What was the age of onset of this behavior?

picking

What was the age of onset of this behavior?

evening-up

What was the age of onset of this behavior?

reckless behaviors

What was the age of onset of this behavior?

03/04/2025 5:04pm

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________

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Page 4

stimulus-dependent tics (a tic which follows, for
example, hearing a particular word or phrase, seeing a
specific object, smelling a particular odor).
What was the age of onset of this behavior?

Please write example(s):

rude/obscene gestures; obscene finger/hand gestures.

What was the age of onset of this behavior?

unusual postures.

What was the age of onset of this behavior?

bending or gyrating, such as bending over.

What was the age of onset of this behavior?

rotating or spinning on one foot.

What was the age of onset of this behavior?

copying the action of another (echopraxia)

What was the age of onset of this behavior?

sudden tic-like impulsive behaviors.

What was the age of onset of this behavior?

Current
Ever

__________________________________

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________

Please describe this behavior.
__________________________________________
tic-like behaviors that could injure/mutilate others.

What was the age of onset of this behavior?

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Current
Ever

__________________________________

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Please describe this behavior.
__________________________________________
self-injurious tic-like behavior(s).

What was the age of onset of this behavior?

Please describe this behavior.

other involuntary and apparently purposeless motor
tics (that do not fit in any previous categories).
Please describe any other patterns or sequences of
motor tic behaviors:

Current
Ever

__________________________________

__________________________________

__________________________________________

Phonic (Vocal) Tics
Age of first vocal tics, in years

Describe first vocal tic:

Was tic onset sudden or gradual?

Age of worst vocal tics, in years

__________________________________

__________________________________

__________________________________

__________________________________

Phonic Tic Symptom Checklist
Please select if the patient currently (during the past week) has each tic OR if they ever (but not currently) had the
tic. State age of onset (in years) if patient has had this behavior.
The patient has experienced, or others have noticed, involuntary and apparently purposeless bouts of:
coughing.

What was the age of onset of this behavior?

throat clearing.

What was the age of onset of this behavior?

sniffing.

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Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

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What was the age of onset of this behavior?

whistling.

What was the age of onset of this behavior?

animal or bird noises.

What was the age of onset of this behavior?

other simple phonic tics.

What was the age of onset of this behavior?

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________

Please list:
__________________________________________
syllables.

What was the age of onset of this behavior?

Current
Ever

__________________________________

Please list:
__________________________________________
words.

What was the age of onset of this behavior?

Current
Ever

__________________________________

Please list:
__________________________________________
rude or obscene words or phrases.

What was the age of onset of this behavior?

Current
Ever

__________________________________

Please list:
__________________________________________

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Page 7

repeating what someone else said, either sounds,
single words or sentences. Perhaps repeating what's
said on TV (echolalia).
What was the age of onset of this behavior?

repeating something the patient said over and over
again (palilalia).
What was the age of onset of this behavior?

other tic-like speech problems, such as sudden changes
in volume or pitch.
What was the age of onset of this behavior?

Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________

Please describe:
__________________________________________
Describe any other patterns or sequences of phonic tic
behaviors:

What was the age of onset of this behavior?

03/04/2025 5:04pm

__________________________________________

__________________________________

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Page 8

Severity Ratings: Number (Past 7-10 days)
Current Motor Number
Current Phonic Number
______ ______
Rating Scale
(0) None (no tics) 
(1) Single tic
(2) Multiple discrete tics (2-5)
(3) Multiple discrete tics (>5) 
(4) Multiple discrete tics plus at least one
orchestrated pattern of multiple simultaneous or
sequential tics where it is difficult to distinguish
discrete tics. 
(5) Multiple discrete tics plus several (>2)
orchestrated paroxysms of multiple simultaneous or
sequential tics where it is difficult to distinguish
discrete tics. 

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Page 9

Severity Ratings: Frequency (Past 7-10 days)
Current Motor Frequency
Current Phonic Frequency
______ ______
Rating Scale
(0) None: No evidence of specific tic behaviors. 
(1) 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.
(2) 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. 
(3) 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.
(4) 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.
(5) Always: Specific tic behaviors are present
virtually all the time. Tic free intervals are
difficult to identify and do not last more than 5 to
10 minutes at most.

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Page 10

Severity Ratings: Intensity (Past 7-10 days)
Current Motor Intensity
Current Phonic Intensity
______ ______
Rating Scale
(0) Absent: Tics are not present at all
(1) Minimal: Tics are 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.
 
(2) Mild: Tics are not more forceful than comparable
voluntary actions or utterances and are typically not
noticed because of their intensity.
 
(3) Moderate: 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.
 
(4)  Marked: 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.
 
(5) Severe: 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.

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Severity Ratings: Complexity (Past 7-10 days)
Current Motor Complexity
Current Phonic Complexity
______ ______
Rating Scale
(0) None: Tics are not present OR if present, all
tics are clearly "simple" (sudden, brief, purposeless)
in character.
 
(1) Borderline: Some tics are not clearly "simple" in
character.
 
(2) Mild: Some tics are clearly "complex" (purposeful
in appearance) and mimic brief "automatic" behaviors,
such as grooming, syllables, or brief meaningful
utterances such as "ah huh", or "hi", that could be
readily camouflaged.
 
(3) Moderate: Some tics are more "complex" (more
purposeful 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).
 
(4) 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,
speech atypicalities, longer bouts of saying "what do
you mean" repeatedly or saying "fu" or "sh").
 
(5)  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).

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Severity Ratings: Interference (Past 7-10 days)
Current Motor Interference
Current Phonic Interference
______ ______
Rating Scale
(0) None: This means there are no tics present at
all.
 
(1) Minimal: When tics are present, they do not
interrupt the flow of behavior or speech.
 
(2) Mild: When tics are present, they occasionally
interrupt the flow of behavior or speech.
 
(3) Moderate: When tics are present, they frequently
interrupt the flow of behavior or speech.
 
(4) Marked: When tics are present, they frequently
interrupt the flow of behavior or speech, and they
occasionally disrupt intended action or communication.
 
(5) Severe: When tics are present, they frequently
disrupt intended action or communication.

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Page 13

Severity Ratings: Impairment (Past 7-10 days)
Current Motor Impairment
Current Phonic Impairment
______ ______
Rating Scale
(0) None
 
(10) Minimal: Tics associated with subtle
difficulties in self-esteem, family life, social
acceptance or school/job functioning (infrequent upset
or concern about tics vis a vis the future, periodic,
slight increase in family tensions because of tics;
friend or acquaintances may occasionally notice or
comment about tics in an upsetting way.
 
(20) Mild: Tics associated with minor difficulties in
self-esteem, family life, social acceptance, or
school/job functioning.
 
(30) Moderate: Tics associated with some clear
problems in self-esteem, family life, social
acceptance, or school/job functioning (episodes of
dysphoria, periodic distress and upheaval in the
family, frequent teasing by peers or episodic social
avoidance, periodic interference in school/job
performance because of tics).
 
(40) Marked: Tics associated with major difficulties
in self-esteem, family life, social acceptance, or
school/job functioning.
 
(50) Severe: Tics associated with extreme
difficulties in self-esteem, family life, social
acceptance, or school/job functioning (severe
depression with suicidal ideation, disruption of the
family [separation/divorce, residential placement],
disruption of social ties, severely restricted life
because of social stigma and social avoidance, removal
from school/job).
Initials of person completing this form.

Optional: Provide any comments on clinical information
entered on this form. Please do not use any patient
identifiers.

03/04/2025 5:04pm

__________________________________

__________________________________________

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Page 14

For the person conducting the assessment: How familiar
are you with this individual (being assessed with
YGTSS)?

03/04/2025 5:04pm

Not familiar (for example: this was my first
encounter with this individual, or previous
encounters were very brief)
Somewhat familiar (for example: I have interacted
with this individual on more than one occasion and
for more than just a brief encounter)
Very familiar (I have interacted with this
individual on several occasions AND am very
familiar with their tic symptoms)

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