Parent Form Redcap copy

Att 9_Parent Forms in REDCap.pdf

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

Parent Form Redcap copy

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Page 1

Parent

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Public reporting burden of this collection of information is estimated to average 45 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.   
Today's Date:

Timestamp

What is this child's date of birth?

Child's Age

__________________________________

__________________________________

__________________________________

__________________________________

If your child is 18 years or older, please do not complete this form and request an adult form for your child instead.

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Page 2

Please answer the following questions about your child.
What is this child's race and/or ethnicity? Select all
that apply.

American Indian or Alaska Native. For example,
Navajo Nation, Blackfeet Tribe of the Blackfeet
Indian Reservation of Montana, Native Village of
Barrow Inupiat Traditional Government, Nome Eskimo
Community, Aztec, Maya, etc.
Asian. For example, Chinese, Asian Indian,
Filipino, Vietnamese, Korean, Japanese, etc.
Black or African American. For example, African
American, Jamaican, Haitian, Nigerian, Ethiopian,
Somali, etc.
Hispanic or Latino. For example, Mexican, Puerto
Rican, Salvadoran, Cuban, Dominican, Guatemalan,
etc.
Middle Eastern or North African. For example,
Lebanese, Iranian, Egyptian, Syrian, Iraqi,
Israeli, etc.
Native Hawaiian or Pacific Islander. For example,
Native Hawaiian, Samoan, Chamorro, Tongan, Fijian,
Marshallese, etc.
White. For example, English, German, Irish,
Italian, Polish, Scottish, etc.

Has a doctor or other health care provider EVER told you that this child has:
An anxiety disorder, such as generalized anxiety
disorder, panic disorder, or a phobia?

Yes
No

Anxiety is a feeling of constant worrying. Children
with severe anxiety problems may be diagnosed as
having anxiety disorders.
Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Depression?

Yes
No

Some common types of depression include major
depression (or major depressive disorder), bipolar
depression, dysthymia, post-partum depression, and
seasonal affective disorder.
Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Autism or Autism Spectrum Disorder?

Yes
No

Include diagnoses of Asperger's Disorder or Pervasive
Developmental Disorder (PDD).

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Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Attention Deficit Disorder or
Attention-Deficit/Hyperactivity Disorder, that is, ADD
or ADHD?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Obsessive-compulsive disorder or OCD?

Yes
No

Children with OCD feel the need to check things
repeatedly, or have certain thoughts or perform
routines and rituals over and over.
Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Post-traumatic stress disorder or PTSD?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Substance use disorder?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Frequent or severe headaches, including migraine?

Yes
No

Does this child currently have the condition?

Yes
No

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Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

A sleep disorder?

Yes
No

Examples of sleep disorders include sleep apnea,
insomnia, and narcolepsy.
Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Eating disorder?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Self-injurious behavior?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

A concussion or brain injury

Yes
No

A concussion or brain injury is when a blow or jolt to
the head causes problems such as headaches, dizziness,
being dazed or confused, difficulty remembering or
concentrating, vomiting, blurred vision, changes in
mood or behavior, or being knocked out.

Has a doctor, other health care provider, or educator EVER told you that this child has...
Examples of educators are teachers and school nurses.
Behavioral or conduct problems?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

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Developmental delay?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Intellectual disability (formerly known as mental
retardation)?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Speech disorder?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Language disorder?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Learning disability?

Yes
No

Does this child currently have the condition?

Yes
No

Would you describe it as mild, moderate or severe?

Mild
Moderate
Severe

Has a doctor or healthcare provider told you that this child currently has:
Allergies (such as food, drug, insect, seasonal, or
other)?

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Yes
No

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Asthma?

Yes
No

Autoimmune disease (such as Type 1 Diabetes, Celiac,
or Juvenile Idiopathic Arthritis)?

Yes
No

Type 2 Diabetes?

Yes
No

Epilepsy or seizure disorder?

Yes
No

Has this child ever shown extreme expression of anger,
often to the point of uncontrollable rage that is
disproportionate to the situation at hand?

Yes
No

Does this child currently show extreme expression of
anger?

Yes
No

Would you describe it as mild, moderate, or severe?

Mild
Moderate
Severe

Has this child ever had sensory processing problems?

Yes
No

For example, being hypersensitive (over-responsive) to
certain sensations (like certain lights, sounds,
touch, tastes, or smells) or hyposensitive
(under-responsive) and seek out sensory input, to the
point that it causes distress.

You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), you can go to the next page.

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Treatment for Tic Disorders and Related Conditions
The next questions ask about medications this child may be taking for their tic disorder or related conditions.
Related conditions include things like ADHD, OCD, anxiety, depression, behavior issues, or other mental health
conditions.
Has this child ever taken medication for a tic
disorder or related conditions?
At what age did this child first start taking
medication for a tic disorder or related conditions?
Is this child currently taking medication for a tic
disorder or related conditions?
What medications does this child currently take for a
tic disorder or related conditions?

Yes
No

__________________________________
Yes
No

__________________________________

Please list all.
Who usually makes sure this child takes their
medication for a tic disorder or related conditions? 

A parent or guardian
Another family member or adult
The child
Other person (Please specify relationship of other
person): ______

In the past 12 months, was there a time when this
child resisted taking their medication for a tic
disorder or related conditions?

Yes
No

Do not include resistance solely due to physical
reasons such as being unable to swallow a pill.
The next questions ask about other treatments for a tic disorder or related conditions.
Related conditions include things like ADHD, OCD, anxiety, depression, behavior issues, or other mental health
conditions.
Has this child ever received comprehensive behavioral
intervention for tics (CBIT) or habit reversal therapy
for a tic disorder?

Yes
No
Don't know

Is this child currently receiving comprehensive
behavior intervention for tics (CBIT) or habit
reversal therapy for a tic disorder?

Yes
No
Don't know

Has this child ever received school-based behavioral
treatment, support, or accommodation for a tic
disorder or related conditions?

Yes
No
Don't know

Do not include CBIT or habit reversal therapy.
Is this child currently receiving school-based
behavioral treatment, support, or accommodation for a
tic disorder or related conditions?

Yes
No
Don't know

Do not include CBIT or habit reversal therapy.

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Has this child ever received behavioral treatment
based outside of school for a tic disorder or related
conditions?

Yes
No
Don't know

Do not include CBIT or habit reversal therapy.
Is this child currently receiving behavior treatment
based outside of school for a tic disorder or related
conditions?

Yes
No
Don't know

Do not include CBIT or habit reversal therapy.
Has this child ever received any other treatment for a
tic disorder or related conditions?

Yes (Please specify): ______
No
Don't know

Is this child currently receiving any other treatment
for a tic disorder or related conditions?

Yes (Please specify): ______
No
Don't know

Does this child currently have a formal educational
plan, such as an Individualized Education Program,
also called an IEP or a 504 plan?

Yes
No
Don't know

Which one is it, an IEP or a 504 plan?

IEP
504
Something else
Both IEP and 504 plan

Overall, how satisfied are you with this child's tic
disorder treatment and management? 

Very satisfied
Somewhat satisfied
Somewhat dissatisfied
Very dissatisfied

In the past year, has your child received any of the
following for any mental, emotional, or behavioral
problem, across settings (school, doctor's office)?

Parent training
Social skills training
Cognitive behavioral therapy
Counseling (for example, talk therapy or
psychotherapy)
Other (Please specify): ______
None of these

Select all that apply.

You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), you can go to the next page.

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Healthcare Transition (from Pediatric to Adult Health Care) 

Do any of this child's doctors or other health care
providers treat only children?

Yes
No

Have they talked with you about when this child will
need to see doctors or other health care providers who
treat adults?

Yes
No

Has this child's doctor or other health care provider actively worked with this child to:
Make positive choices about their health. 
For example, by eating healthy, getting regular
exercise, not using tobacco, alcohol or other drugs,
or delaying sexual activity?
Gain skills to manage their health and health care.
For example, by understanding current health needs,
knowing what to do in a medical emergency, or taking
medications they may need?
Understand the changes in health care that happen at
age 18.
For example, by understanding changes in privacy,
consent, access to information, or decision-making?

Yes
No
Don't know

Yes
No
Don't know

Yes
No
Don't know

Did you and this child receive a summary of your
child's medical history (for example, medical
conditions, allergies, medications, immunizations)?

Yes
No

Have this child's doctors or other health care
providers worked with you and this child to create a
plan of care to meet their health goals and needs?

Yes
No

Do you and this child have access to this plan of
care?

Yes
No

Does this plan of care address transition to doctors
and other health care providers who treat adults?

Yes
No
No, this child already sees providers who treat
adults

Eligibility for health insurance often changes in
young adulthood. Do you know how this child will be
insured as they become an adult?

Yes
No

Has anyone discussed with you how to obtain or keep
some type of health insurance coverage as this child
becomes an adult?

Yes
No

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Do you have concerns about your child transitioning
from pediatric to adult healthcare providers to
provide care related to their tic disorder?

Yes
No

What are your main concerns?
__________________________________________
You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), you can go to the next page.

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School, Cost, and Service use
DURING THE PAST 12 MONTHS, about how many days did
this child miss school because of illness or injury?
Include days missed from any formal home schooling.

DURING THE PAST 12 MONTHS, about how many days did
this child miss school because of behavior, mood, or
tic related concerns?
Include days missed from any formal home schooling.

No missed school days
1-3 days
4-6 days
7-10 days
11 or more days
This child was not enrolled in school
No missed school days
1-3 days
4-6 days
7-10 days
11 or more days
This child was not enrolled in school

Which of the following best describes your current
employment status?

Employed full-time
Employed part-time
Working WITHOUT pay
Not employed but looking for work
Not employed and not looking for work
Retired

Does this child have another parent or adult caregiver
who lives in this household?

Yes
No

Which of the following best describes this caregiver's
current employment status?

Employed full-time
Employed part-time
Working WITHOUT pay
Not employed but looking for work
Not employed and not looking for work
Retired

DURING THE PAST 12 MONTHS, have you or other family members...
Left a job or taken a leave of absence because of this
child's health or health conditions?

Yes
No

Cut down on the hours you work because of this child's
health or health conditions?

Yes
No

Avoided changing jobs because of concerns about
maintaining health insurance for this child?

Yes
No

Including co-pays and amounts reimbursed from Health
Savings Accounts (HSA) and Flexible Spending Accounts
(FSA), how much money did you pay for this child's
medical, health, dental, and vision care DURING THE
PAST 12 MONTHS?

$0 (No medical or health-related expenses)
$1-$249
$250-$499
$500-$999
$1,000-$5,000
More than $5000

Do not include health insurance premiums or costs that
were or will be reimbursed by insurance or another
source.

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Page 12

Including co-pays and amounts reimbursed from Health
Savings Accounts (HSA) and Flexible Spending Accounts
(FSA), how much money did you pay for this child's
mental health care including prescriptions and office
visits DURING THE PAST 12 MONTHS?
Do not include health insurance premiums or costs that
were or will be reimbursed by insurance or another
source.

$0 (No medical or health-related expenses)
$1-$249
$250-$499
$500-$999
$1,000-$5,000
More than $5000

The next questions are about your family's medical bills. Include bills for doctors, dentists, hospitals, therapists,
medication, equipment, and nursing home or home care.
In the past 12 months, did anyone in your family have
problems paying or were unable to pay any medical
bills?

Yes
No

Does anyone in your family currently have any medical
bills that you are unable to pay at all?

Yes
No

If this child gets sick or has an accident, how
worried are you that your family will be able to pay
their medical bills? 

Very worried
Somewhat worried
Not at all worried

During the past 12 months, has medical care BEEN
DELAYED for this child because of the cost?

Yes
No

During the past 12 months, was there any time when
this child needed medical care, but DID NOT GET IT
because of the cost?

Yes
No

At any time in the past 12 months, did this child take
prescription medication?

Yes
No

During the past 12 months, did you DELAY filling a
prescription for this child to save money?

Yes
No

During the past 12 months, was there any time when
this child needed prescription medication, but DID NOT
GET IT because of the cost?

Yes
No

During the past 12 months, has this child been DELAYED
in getting counseling or therapy from a mental health
professional because of the cost?

Yes
No

During the past 12 months, was there any time when
this child needed counseling or therapy from a mental
health professional, but DID NOT GET IT because of the
cost?

Yes
No

During the past 12 months, has this child been DELAYED
in getting counseling or therapy from a mental health
professional because you couldn't get an appointment?

Yes
No

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How long was the delay?

During the past 12 months, how many times has this
child gone to a hospital emergency room about their
health?

Less than 3 months
3-6 months
7-12 months
More than 12 months

__________________________________

This includes emergency room visits that resulted in a
hospital admission.
During the past 12 months, has this child been
hospitalized overnight?

Yes
No

You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), you can go to the next page.

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Page 14

Please answer the following questions about this child.
What is this child's sex?

Male
Female

Which of the following best represents how your child
thinks of themself?

Gay (lesbian or gay)
Straight, this is not gay (or lesbian or gay)
Bisexual
Something else
I don't know the answer

The next questions are about health insurance. Include health insurance obtained through employment or purchased
directly as well as government programs like Medicare, Medicaid, and the Children's Health Insurance Program that
provide medical care or help pay medical bills.
Is this child covered by any kind of health insurance
or some other kind of health care plan?

Yes
No

What kinds of health insurance or health care coverage
does this child have?

Private health insurance
Medicare
Medigap
Medicaid
Children's Health Insurance Program (CHIP)
Military related health care: TRICARE (CHAMPUS) /
VA health care / CHAMP-VA
Indian Health Service
State-sponsored health plan
Other government program
No coverage of any type

Select all that apply.

Does this child have any of the following?
Serious difficulty concentrating, remembering, or
making decisions because of a physical, mental, or
emotional condition

Yes
No

Serious difficulty walking or climbing stairs

Yes
No

Difficulty dressing or bathing

Yes
No

Difficulty doing errands alone, such as visiting a
doctor's office or shopping, because of a physical,
mental, or emotional condition

Yes
No

Deafness or problems with hearing

Yes
No

Blindness or problems with seeing, even when wearing
glasses

Yes
No

You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), you can go to the next page.

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Page 15

Please answer the following questions about yourself and your family.
How are you related to this child?

Biological or adoptive parent
Step-parent
Grandparent
Foster parent
Other: Relative
Other: non-Relative

What is the HIGHEST level of school you have
completed?

Never attended/kindergarten only
Grade 1-11
12th grade, no diploma
GED or equivalent
High school graduate
Some college, no degree
Associate degree: occupational, technical, or
vocational program
Associate degree: academic program
Bachelor's degree (Example: BA, AB, BS, BBA)
Master's degree (Example: MA, MS, MEng, MEd, MBA)
Professional school degree (Example: MD, DDS, DVM,
JD)
Doctoral degree (Example: PhD, EdD)

What is your marital status?

Married
Not married, but living with a partner
Never married
Divorced
Separated
Widowed

The following questions are about the address where you currently live.
What is your current street address?
Example: 123 Main Street
What is the apartment or unit number (skip if none)?
Example: Apt. 5a
In what city do you currently live?

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__________________________________________

__________________________________

__________________________________

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In what state do you currently live?

Specify other place (not US state) you live

What is your current zip code (for address above)?

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Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
District of Columbia
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Other

__________________________________

__________________________________

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How many people are living or staying at this address?

__________________________________

Include everyone who usually lives or stays at this
address. Do NOT include anyone who is living somewhere
else for more than two months, such as a college
student living away or someone in the Armed Forces on
deployment.
What is your best estimate of your total family income
from all sources, before taxes, in the last year?

< $15,000
$15,000-$24,999
$25,000-49,999
$50,000-74,999
$75,000-99,999
$100,000-149,999
$150,000-199,999
$200,000 or higher

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.

If you are interested in receiving project updates in
the future, please enter your email address.  

__________________________________

You may decline to be re-contacted now or at any time
in the future.
You skipped one or more questions on this page. Please review and complete the question(s) before going to the
next page. If you intentionally skipped the question(s), 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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Page 2

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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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.

03/04/2025 5:04pm

Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

__________________________________
Current
Ever

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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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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?

03/04/2025 5:04pm

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.

03/04/2025 5:04pm

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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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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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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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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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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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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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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