Adult Form

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX

Attachment 3: Adult Self Report (18 years and older)
Table of Contents
A.
B.
C.
D.
E.
F.
G.
H.
I.
J.

Date of Birth and Race/Ethnicity
Patient Health Questionnaire (PHQ-9)
Self-injury and Suicide
Co-occurring
Treatment
Healthcare Transition
Cost and Service Use
Additional Demographic Questions
Generalized Anxiety Disorder 7-item (GAD-7)
Clinical Assessment:
a. Ask Suicide Screening Questions (ASQ)
b. Yale Global Tic Severity Scale (YGTSS)

Public reporting burden of this collection of information is estimated to average 60 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).

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Questions from national surveys and previously validated measures were prioritized for inclusion in the this survey.
Question sources for the adult self-report survey include the following instruments:
• National Survey of Children’s Health (NSCH) https://www.census.gov/content/dam/Census/programssurveys/nsch/tech-documentation/questionnaires/2023/2023_NSCH-T3_FINAL.pdf
• National Health Interview Survey (NHIS) (https://www.cdc.gov/nchs/nhis/)
• Behavioral Risk Factor Surveillance System (BRFSS) (https://www.cdc.gov/brfss/)
• Current Population Survey (CPS) https://www.census.gov/programs-surveys/cps/technicaldocumentation/questionnaires.html
• SEED Follow-Up Survey https://www.cdc.gov/autism/seed/follow-up.html
• National Survey on the Diagnosis and Treatment of ADHD and Tourette syndrome (NS-DATA)
https://ftp.cdc.gov/pub/Health_Statistics/NCHS/slaits/ns_data/NS_DATA_Questionnaire.pdf
• National Survey on Drug Use and Health (NSDUH) https://www.samhsa.gov/data/data-we-collect/nsduhnational-survey-drug-use-and-health
• Youth Risk Behavior Survey
https://www.cdc.gov/yrbs/media/pdf/2023/2023_YRBS_Standard_HS_Questionnaire.pdf
The survey will include two validated measures:
• Patient Health Questionnaire (PHQ-9)
• Generalized Anxiety Disorder 7-item (GAD-7)
Additionally, there will be a 2-part clinical assessment (this is included in the burden calculation):
a. Ask Suicide Screening Questions (ASQ)
b. Yale Global Tic Severity Scale (YGTSS)
•
We were mindful of the benefits of using previously tested and/or approved questions for adoption in the tic
surveillance survey. All above surveys and instruments underwent extensive pilot and field testing and/or were
previously approved and fully implemented in previous studies. Moreover, many of the questions we used are from
surveys of nationally representative samples of US children and adults. This holds an added benefit of allowing us to
compare data collected from our survey to external prevalence rates for health indicators in the general U.S. population.
In compiling questions into a single survey, we made only minor revisions to some of these existing questions. For
example, we revised parent-report healthcare transition questions from the Longitudinal National Survey of Children’s
Health to ask young adults directly about their experiences with healthcare transition. We also added mention of mental
health care, specifically, to questions on healthcare as this has been reported as a major area of impact for individuals
with tic disorders.
We have noted where each survey question originated (in the “Taken From” column). We have also annotated whether
modifications were made using yellow highlight. New questions and answers are highlighted in blue.

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
A. Date of Birth and Race/Ethnicity
Section Intro

Taken From

This survey asks questions about your mental health and emotions. If you say
that you have thought about hurting yourself or have tried to do so, we may
inform your doctor or clinic staff. This is to make sure you are safe and to help
you get support and care.

Revised from a previous
project.

By filling out this survey, you agree to this process. If you have any worries or
need help right away, please talk to the clinic staff.
You do not have to complete the survey if you don’t want to. If you feel
uncomfortable with a question, you can leave it blank.

Proposed Question
Response options
Taken From
Note: Today’s date and the time stamp will be automatically populated by REDCap, and will not be seen by
respondents. Today’s date will be used to calculate age to make sure individual’s are completing the correct
form, and the time will be used in any notifications (if they are completing the wrong form or indicate self-harm
or suicide) so the project staff will know which respondent endorsed those items (if multiple people are
completing the form at the same time). Age will also not be seen by the respondent. If the respondent indicates
they are not between 18-26, they will receive the following message: If you are under the age of 18, over the
age of 26, or if you are filling this out for a child under the age of 18, please request an alternative form from
the project staff.
What is your date of birth?
Month/Day/Year
Please answer the following questions about yourself.
What is your race and/or ethnicity?
 American Indian or Alaska Native. HHS/OMB approved method
Select all that apply.
For example, Navajo Nation,
to ask R/E questions.
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.

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX






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.

B. Patient Health Questionnaire (PHQ-9)
Proposed Question

Response options

Over the last 2 weeks, how often have you been bothered by any of the
following problems?
Little interest or pleasure
 Not at all
in doing things
 Several days
 More than half the days
 Nearly every day
Feeling down, depressed,
 Not at all
or hopeless
 Several days
 More than half the days
 Nearly every day
Trouble falling or staying
 Not at all
asleep, or sleeping too
 Several days
much
 More than half the days
 Nearly every day
Feeling tired or having
 Not at all
little energy
 Several days
 More than half the days
 Nearly every day
Poor appetite or
 Not at all
overeating
 Several days
 More than half the days
 Nearly every day
Feeling bad about yourself
 Not at all
- or that you are a failure
 Several days
or have let yourself or
 More than half the days
your family down
 Nearly every day
Trouble concentrating on
 Not at all
things, such as reading the
 Several days
newspaper or watching
 More than half the days
television
 Nearly every day

Taken From
PHQ-9 (validated measure)
PHQ-9

PHQ-9

PHQ-9

PHQ-9

PHQ-9

PHQ-9

PHQ-9

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Moving or speaking so
slowly that other people
could have
noticed? Or the opposite
— being so fidgety or
restless that you have
been moving around a lot
more than usual
Thoughts that you would
be better off dead or of
hurting yourself in some
way
If you checked off any problems,
how difficult have these problems
made it for you to do your work,
take care of things at home, or get
along with other people?






Not at all
Several days
More than half the days
Nearly every day

PHQ-9










Not at all
Several days
More than half the days
Nearly every day
Not difficult at all
Somewhat difficult
Very difficult
Extremely difficult

PHQ-9

PHQ-9 [Only asked if
respondent selects
something other than “not at
all” for any of the PHQ-9
questions].

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
C. Self-injury and Suicide
Question
During the past 12 months, how many times did you do
something to purposely hurt yourself without wanting to die,
such as cutting or burning yourself on purpose?

Response Options

Taken From









0 times
1 time
2 or 3 times
4 or 5 times
6 or more times
Yes
No

YRBS

During the past 12 months, did you make any plans to kill
yourself?




Yes
No

NSDUH [SUI02]

During the past 12 months, did you try to kill yourself?




Yes
No

NSDUH [SUI03]

[IF SUI03=1] During the past 12 months, did you get medical
attention from a doctor or other health professional as a result of
an attempt to kill yourself?




Yes
No

NSDUH [SUI04]

[IF SUI04=1] Did you stay in a hospital overnight or longer because
you tried to kill yourself?




Yes
No

NSDUH [SUI05]

The next few questions are about thoughts of suicide.
At any time in the past 12 months, that is from [DATEFILL] up to
and including today, did you seriously think about trying to kill
yourself?

If you ever feel like you need to talk about mental health issues, emotional pain, or problems
with alcohol or drugs, you can call or text the 988 Suicide and Crisis Lifeline at 988.
Counselors are available 24/7 to listen and help you find services in your area. They can
speak with you in English or Spanish.
Please save this number and website:
988 (call or text)
https://988lifeline.org/

NSDUH [SUI01]

NSDUH AHELP,
adapted
In NSDUH, this
information was
originally only
offered if YSUI01,
YSUI02 or

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
YSUI03=1, but we
will provide for all.

[If the respondent skipped any questions in this section, they will receive the following message:]
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.

D. The next questions ask about any other conditions you might have along with your tic disorder.
Questions and Response Options

Taken From

Have you EVER been told by a doctor or other
health professional that you had:

Question B: Do
you currently have
the condition?
[Skip logic: Only
those who
respond “Yes” to
previous question
will be asked
Question B]

Any type of anxiety disorder?
Some common types of anxiety
disorders include generalized anxiety
disorder, social anxiety disorder,
panic disorder, and phobias.
Any type of depression?
Some common types of depression
include major depression (or major
depressive disorder), bipolar
depression, dysthymia, post-partum
depression, and seasonal affective
disorder.
Autism or Autism Spectrum Disorder?

Question C:
Would you
describe it as
mild, moderate
or severe?
[Skip logic: Only
those who
respond “Yes”
to question B
will be asked
Question C]
 Mild
 Moderate
 Severe

Stem is from NHIS.
Follow-up is
adapted for selfreport from NSCH.




Yes
No




Yes
No

NHIS, follow-up
questions adapted
from NSCH.
Removed OCD and
PTSD as examples.




Yes
No




Yes
No





Mild
Moderate
Severe

NHIS, follow-up
questions adapted
from NSCH.




Yes
No




Yes
No





Mild
Moderate
Severe

NSCH

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
This includes diagnoses of Asperger's
Disorder or Pervasive Developmental
Disorder (PDD).
Attention Deficit Disorder or AttentionDeficit/Hyperactivity Disorder, that is,
ADD or ADHD?
Obsessive-compulsive disorder or OCD?




Yes
No




Yes
No




Yes
No




Yes
No

Post-traumatic stress disorder or PTSD?




Yes
No




Yes
No

Substance use disorder?




Yes
No




Yes
No




Yes
No







Yes
No




Self-injurious behavior?

A concussion or brain injury?

Substance abuse is the frequent use of
substances such as drugs that can be
physically dangerous and can potentially
lead to legal problems and frequent
social or interpersonal problems.
Frequent or severe headaches, including
migraine?
A sleep disorder?
Examples of sleep disorders include sleep
apnea, insomnia, and narcolepsy.
Eating disorder?

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.
Questions and Response Options














Mild
Moderate
Severe
Mild
Moderate
Severe
Mild
Moderate
Severe
Mild
Moderate
Severe

NSCH

Yes
No





Mild
Moderate
Severe

NSCH




Yes
No





Mild
Moderate
Severe

NS-DATA

Yes
No




Yes
No





Mild
Moderate
Severe




Yes
No




Yes
No





Mild
Moderate
Severe



Yes
No

SEED follow-up
survey, with
addition of severity
question.
SEED follow-up
survey, with
addition of severity
question.
Adapted from
NSCH. NSCH first
asks about whether
they sought care,
and then about if
they were told.

NS-DATA, NHIS
(pulled from
anxiety question).
NS-DATA, NHIS
(pulled from
anxiety question).
NS-DATA

Taken From

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Have you EVER been told by a
doctor or educator that you had:
Examples of educators are teachers
and school nurses.

Question B: Do you
currently have the
condition?

Question C: Would you
describe it as mild,
moderate or severe?

[Skip logic: Only those
who respond “Yes” to
previous question will
be asked Question B]

[Skip logic: Only those who
respond “Yes” to question B
will be asked Question C]

Behavioral or
conduct problems?




Yes
No




Yes
No

Developmental
delay?




Yes
No




Yes
No

Intellectual disability
(formerly known as
mental retardation)?




Yes
No




Yes
No

Speech disorder?




Yes
No







Yes
No




Yes
No

Language disorder?

Learning disability?

Stem is from NHIS.
Follow-up is
adapted for selfreport from NSCH.











Mild
Moderate
Severe
Mild
Moderate
Severe
Mild
Moderate
Severe

NSCH

Yes
No





Mild
Moderate
Severe

NSCH




Yes
No





Mild
Moderate
Severe

NSCH




Yes
No





Mild
Moderate
Severe

NSCH
NSCH

Adapted: split out
into two questions
(speech and
language separate)

Adapted: split out
into two questions
(speech and
language separate)
NSCH

Questions and Response Options

Taken From

Has a doctor or other health care provider told you that you currently have:
Allergies (such as food, drug, insect, seasonal, or other)?
 Yes
 No

NSCH

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Asthma?
Autoimmune disease (such as Type 1 Diabetes, Celiac, or Juvenile
Idiopathic Arthritis)?
Type 2 Diabetes?
Epilepsy or Seizure Disorder?
Question
Have you ever shown extreme expression of anger, often
to the point of uncontrollable rage that is
disproportionate to the situation at hand?
[If yes to ever} Do you currently show extreme expression
of anger?
[If yes to current] Would you describe it as mild,
moderate or severe?
Have you ever had sensory processing problems?






Yes
No
Yes
No

NSCH






Yes
No
Yes
No

NSCH

Response Options
 Yes
 No








Yes
No
Mild
Moderate
Severe
Yes
No

NSCH

NSCH
Taken From
Adapted from NS-DATA
question on intermittent
explosive disorder

Edited from SEED question
asking about sensory integration
disorder, which isn’t recognized
For example, being hypersensitive (over-responsive) to
as a disorder, so we are
certain sensations (like certain lights, sounds, touch,
rephrasing as problems the
tastes, or smells) or hyposensitive (under-responsive) and
seek out sensory input, to the point that it causes distress.
adult might be experiencing.
[If the respondent skipped any questions in this section, they will receive the following message:]
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.

E. The next questions ask about treatment for tic disorders and related conditions.
Question
Response:
The next questions ask about medications you may be taking for a tic disorder or
related conditions.
Related conditions include things like ADHD, OCD, anxiety, depression, behavior issues,
or other mental health conditions.
Have you ever taken medication for a tic disorder
 Yes [Go to TS_C1_2]
or related conditions?
 No [Go to TS_C3_1]
At what age did you first start taking medication
for a tic disorder or related conditions?
Are you currently taking medication for a tic
disorder or related conditions?

Free text

 Yes [Go to TS_C1_4];
 No [Go to TS_C3_1];

Origin and notes:

NS-DATA TS_C1_1
NS-DATA TS_C1_2

NS-DATA TS_C1_3

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
What medications do you currently take for a tic
disorder or related conditions?

Free text

Please list all.
Who usually makes sure you take your
medication for a tic disorder or related
conditions?

Please specify the relationship of the other
person who usually makes sure you take your
medication for a tic disorder or related
conditions:

 I do
 A parent or guardian
 Another family member or
adult
 Other person (please specify
relationship of other person)

Free text

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.
Have you ever received comprehensive
 Yes [go to TS_C3_1A;]
behavioral intervention for tics (CBIT) or habit
 No [go to TS_C3_2];
reversal therapy for a tic disorder?
 Don’t know [go to
TS_C3_2];
Are you currently receiving comprehensive
 Yes
behavior intervention for tics (CBIT) or habit
 No
reversal therapy for a tic disorder?
 Don’t know
Have you ever received school-based behavioral
 Yes [GO TO TS_C3_2A];
treatment, support, or accommodation for a tic
 No [GO TO TS_C3_3];
 Don’t know [GO TO
disorder or related conditions?
TS_C3_3]
Do not include CBIT or habit reversal therapy.
Are you currently receiving school-based
 Yes
behavioral treatment, support, or
 No
 Don’t know
accommodation for a tic disorder or related
conditions?
 Not currently in school
Do not include CBIT or habit reversal therapy.

NS-DATA TS_C1_4_NEW
Original question had
multiple choice/select all
response options (phone
survey).
NS-DATA TS_C2_1
Original response options:
(1) A PARENT OR
GUARDIAN
(2) ANOTHER FAMILY
MEMBER
(3) SOMEONE AT SCHOOL
(4) A BABYSITTER OR
NANNY
(5) THE CHILD
(6) OTHER PERSON
Note: This will only be
asked if selected “other”
for previous question, and
a space will appear in
previous question. This
text will not show.

NS-DATA TS_C3_1

NS-DATA TS_C3_1A
NS-DATA TS_C3_2

NS-DATA TS_C3_2A

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
Have you ever received behavioral treatment
based outside of school for a tic disorder or
related conditions?





Yes [GO TO TS_C3_3A]
No [GO TO TS_C3_4];
Don’t know

NS-DATA TS_C3_3

Are you currently receiving behavior treatment
based outside of school for a tic disorder or
related conditions?





Yes
No
Don’t know

NS-DATA TS_C3_3A

Have you ever received any other treatment for a
tic disorder or related conditions?





NS-DATA TS_C3_4

Please specify any other treatment you have ever
received for a tic disorder or related conditions:



Yes
No [GO TO TS_C4_3];
Don’t know [GO TO
TS_C4_3];
Free text

Are you currently receiving any other treatment
for a tic disorder or related conditions?





Please specify any other treatment you are
currently receiving for a tic disorder or related
conditions:



Yes
No (skip next question)
Don’t know (skip next
question)
Free text

Overall, how satisfied are you with your tic
disorder treatment and management? Would you
say you are very satisfied, somewhat satisfied,
somewhat dissatisfied or very dissatisfied?






Very satisfied;
Somewhat satisfied;
Somewhat dissatisfied;
Very dissatisfied;

NS-DATA TS_C4_3

In the past year, have you received any of the
following for any mental, emotional, or
behavioral problem, across settings (school,
doctor’s office)?




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

PLAY-MH



Select all that apply.



[Note: REDCap programmed to
not allow response of “none of
these” and another response].
[If other] Please specify any other treatment you
have received for any mental, emotional, or
behavioral problem.



Free text

Note: This will only be
asked if selected “YES” for
previous question
NS-DATA TS_C3_4A

Note: This will only be
asked if selected “YES” for
previous question

Replaced “his/her” with
“any”. Each of these
treatment types were
asked as separate
questions – propose
combining with “select all
that apply” response
options.
Omitted “parent training”
from adult response
options.
Note: This will only be
asked if “Other” selected
for previous question, and
a box will appear in
previous question, they
will not see the question
text here.

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
[If the respondent skipped any questions in this section, they will receive the following message:]
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.

F. The next questions ask about the transition from pediatric to adult health care.
Proposed Question
SINCE TURNING 18, have you made the transfer to a
primary care provider who treats adults?

Response Options
 I already saw a primary
care provider who treats
adults before I turned 18
➔ SKIP to question B22
 Yes
 No – skip to B20

[If yes,] How satisfied were you with the health care
providers’ help to transfer your care to adult health
care?






Very satisfied
Somewhat satisfied
Somewhat dissatisfied
Very dissatisfied

NSCH longitudinal
survey B17, adapted
for self-report, added
skip pattern

[If no to first question,] Has a doctor or other health
care provider talked with you about the process of
transferring to adult care?
Have any of your doctors or other health care providers
helped with finding a new primary care provider who
treats adults?




Yes
No





Yes, and I have seen a
primary care provider who
treats adults
Yes, but I have not been
able to see a primary care
provider who treats adults
No

NSCH longitudinal
survey B20, adapted
for self-report
NSCH longitudinal
survey B21, adapted
for self-report. Only
one Yes option
included on NSCH. We
split in two.




Yes
No – skip to B24

NSCH longitudinal
survey B22, adapted
for self-report



Yes, and I have seen a
mental health provider
who cares for adults
Yes, but I have not been
able to see a mental health
provider who cares for
adults
No

NSCH longitudinal
survey B23, adapted
for self-report. Only
one Yes option
included on NSCH. We
split in two.

Examples of assistance include suggesting names of
adult providers, making introductions, or sending a
letter to the new provider.
SINCE TURNING 18, have you needed to see a mental
health professional?
Mental health professionals include psychiatrists,
psychologists, psychiatric nurses, and clinical social
workers.
[If yes,] Did your doctors or other health care providers
help with finding mental health professionals who care
for adults?







Taken From
NSCH longitudinal
survey B16, adapted
for self-report

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
SINCE TURNING 18, have you needed to see a specialist
other than a mental health professional?

Yes
No, skip next question

NSCH longitudinal
survey B24, adapted
for self-report

NSCH longitudinal
survey B25, adapted
for self-report. Only
one Yes option
included on NSCH. We
split in two.



Yes, and I have seen a
specialist who cares for
adults
Yes, but I have not been
able to see a specialist who
cares for adults
No

SINCE TURNING 18, did you need to find a new health
professional for care related to your tic disorder?




Yes
No, skip to New3

Did your doctors or other health care providers help
with finding a health professional who cares for adults
with tic disorders?



Examples of assistance include suggesting names of
adult providers, making introductions, or sending a
letter to the new provider.



Yes, and I have seen a
health professional who
cares for adults with tic
disorders
Yes, but I have not been
able to see a health
professional who cares for
adults with tic disorders
No

New question, based
on NSCH longitudinal
survey questions
(New1)
New question, based
on NSCH longitudinal
survey questions
(New2)




Examples of specialists include doctors like surgeons,
heart doctors, allergy doctors, skin doctors, and others
who specialize in one area of health care. Do not include
dentists or other oral health care providers.
Did your doctors or other health care providers help

with finding specialists who care for adults (other than
mental health professionals)?



SINCE TURNING 18, have you had any of the following
challenges in finding a health professional who treats
tic disorders in adults?
Select all that apply.
Providers in my area that treat tic disorders in adults…

 are not accepting new
patients
 do not take my health
insurance
 do not have appointments
in the next 6 months
 do not have appointments
that fit my schedule
 do not offer in-person
appointments
 do not telehealth/virtual
appointments
 there are no providers that
treat tic disorders in adults
in my area
 I have had a different
problem

New question, based
on NSCH longitudinal
survey questions
(New3)

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
 I haven’t had any problems
finding a health professional
who treats tic disorders in
adults
Free Text (word limit: 125
words)

[If answered “I have had a different problem” in
New question, based
previous question] What other challenges (not listed
on NSCH longitudinal
survey questions
above) have you faced in finding a health professional
who treats tic disorders in adults?
(New4)
[If the respondent skipped any questions in this section, they will receive the following message:]
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.

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
G. The next questions ask about employment and use of health care services.
Question
LAST WEEK, did you work for pay at a
job or business?

Responses
 Yes [go to EMPHOURS_A]
 No [go to EMPNOWRK_A]

Did you have a job or business LAST
WEEK, but were temporarily absent
due to illness, vacation, family or
maternity leave, or some other reason?
What is the MAIN reason you were not
working for pay at a job or business last
week?




Yes [go to EMPHOURS_A]
No [go to EMPWHYNOT_A]

NHIS EMPNOWRK_A









Unemployed, laid off, looking for work
Seasonal/contract work
Retired
Unable to work for health reasons/disabled
Taking care of house or family
Going to school
Working at a family-owned job or business not
for pay [go to EMPHOURS_A]
Other

NHIS
EMPWHYNOT_A


When was the last time you worked for
pay at a job or business, even if only for
a few days?

How many hours per week do you
USUALLY work in total at ALL jobs or
businesses?
[If previous question is missing] When
you work do you USUALLY work 35
hours or more per week in total at ALL
jobs or businesses?
During the past 12 months, about how
many days of work did you miss
because you had an illness, injury, or
disability?
Do not include family or
paternity/maternity leave.
Last year, how much was paid out-ofpocket for your OWN medical care,
such as copays for doctor and dentist
visits, diagnostic tests, prescription

Within the past 12 months [if
EMPWHYNOT_A= “Seasonal/contract work”
[go to EMPHOURS_A] else [go to Next
Section]]
 1-5 years ago [go to Next Section – about out
of pocket expenses]
 Over 5 years ago [go to Next Section about out
of pocket expenses]
 Never worked [go to Next Section about out of
pocket expenses]
Free text [001-168 range of values]





Yes
No

Free text [000-365 Range of values]






$0 (No medical or health-related expenses)
$1-$249
$250-$499
$500-$999

From
NHIS EMPLASTWK_A

NHIS
EMPWHENWRK_A

NHIS EMPHOURS_A
NHIS EMPFULLTIM_A

NHIS EMPDAYMISS_A

CPS (ASEC); response
options from NSCH

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
medicine, glasses and contacts, and
medical supplies?

 $1,000-$5,000
 More than $5,000

Include any amount paid out-of-pocket
on your behalf by anyone in this
household.
Last year, how much was paid out-ofpocket for your non-prescription
healthcare products such as vitamins,
allergy and cold medicine, pain
relievers, quit smoking aids, AND
anything else not yet reported?]








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

CPS (ASEC) ; response
options from NSCH








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

Adapted from CPS
questions above;
response options
from NSCH

Include any amount paid out-of-pocket on
your behalf by anyone in this household.

Last year, how much was paid out-ofpocket for your OWN mental health
care, including copays for doctor visits,
prescription medicine, and therapy or
counseling?

Include any amount paid out-of-pocket on
your behalf by anyone in this household.
During the past 12 months, have you
DELAYED getting counseling or therapy
from a mental health professional because
of the cost?
During the past 12 months, was there any
time when you needed counseling or
therapy from a mental health professional,
but DID NOT GET IT because of the cost?
During the past 12 months, have you
DELAYED getting care from a mental health
professional because you couldn’t get an
appointment?
If yes, how long was the delay?




Yes
No

NHIS




Yes
No

NHIS




Yes
No

Adapted from NHIS
questions above

 Less than 3 months
 3-6 months
 7-12 months
 More than 12 months
The next questions are about your medical bills. Include bills for doctors, dentists,
hospitals, therapists, medication, equipment, and nursing home or home care.
In the past 12 months, did you have
 Yes
problems paying or were unable to pay  No
any medical bills?
Do you currently have any medical bills  Yes
that you are unable to pay at all?
 No

New question

If you get sick or have an accident, how
worried are you that you will be able to
pay your medical bills? Are you very

NHIS





Very worried
Somewhat worried
Not at all worried

NHIS
NHIS
NHIS

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
worried, somewhat worried, or not at
all worried?
During the past 12 months, have you
DELAYED getting medical care because
of the cost?
During the past 12 months, was there
any time when you needed medical
care, but DID NOT GET IT because of
the cost?
At any time in the past 12 months, did
you take prescription medication?




Yes
No

NHIS RXDL12M_A




Yes
No

NHIS RXDG12M_A




Yes
No [skip next 3 questions]

NHIS

During the past 12 months, were any of the following true for you?

NHIS
NHIS RXSK12M_A

You skipped medication doses
to save money.




Yes
No

You took less medication to
save money.




Yes
No

NHIS RXLS12M_A

You DELAYED filling a
prescription to save money.




Yes
No

NHIS RXDL12M_A

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




Yes
No

NHIS RXDG12M_A
(asked of all)



Open ended (restrict to 0-365)

NHIS




Yes
No

NHIS

During the past 12 months, how many
times have you gone to a hospital
emergency room about your health?
During the past 12 months, have you
been hospitalized overnight?

[If the respondent skipped any questions in this section, they will receive the following message:]
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.
H. Additional Questions About You
Proposed Question
Which of the following best represents how you
think of yourself?

What is your sex?

Response options
 Gay (lesbian or gay)
 Straight, this is not gay
(or lesbian or gay)
 Bisexual
 Something else
 I don’t know the
answer
 Male
 Female

Taken From
HHS/OMB approved
question

HHS/OMB approved
question

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
What is the HIGHEST level of school you have
completed or the highest degree you have received?


















Are you now married, living with a partner together
as an unmarried couple, or neither?

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)

Married
Living with a partner
together as an
unmarried couple
 Neither
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.
Are you covered by any kind of health insurance or
 Yes
some other kind of health care plan?
 No [skip next 3
questions]
[If yes to having health insurance] What kinds of
 Private health
health insurance or health care coverage do you
insurance
have? Is it...Private health insurance, Medicare,
 Medicare
Medicare supplement, Medicaid, Children's Health
 Medigap
Insurance Program or CHIP, military related health
 Medicaid
care including TRICARE, CHAMPUS, VA health care
 Children's Health
and CHAMP-VA, Indian Health Service, a stateInsurance Program
sponsored health plan, or another government
(CHIP)
program?
 Military related health
care: TRICARE
Select all that apply.



NHIS HHC.0350.00.1

NHIS

NHIS

NHIS
NHIS

[Note: REDCap
programmed to not allow
response of “none of
these” and another
response].

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX





[If yes to having health insurance] Health insurance
plans are usually obtained in one person's name
even if other family members are covered by that
plan. That person is called the policyholder. Are you
the policyholder for your health insurance plan?
[If no to being the policy holder] How are you
related to the policyholder for your health
insurance? Are you the policyholder's child, spouse,
former spouse, or are you related in some other
way?
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?
In what state do you currently live?




(CHAMPUS) / VA health
care / CHAMP-VA
Indian Health Service
State-sponsored health
plan
Other government
program
No coverage of any
type
Yes [skip next question]
No

Child
Spouse
Former spouse
Some other
relationship
Free Text





Free text
Free Text
[Drop down menu to select
one]
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
District of Columbia
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine

NHIS

NHIS

New

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX

Please specify other place (not US state) you live
What is your current zip code (for address above)?
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?

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 (please specify)
Free text
Free text, validated in
REDCap to match zip code
format (5 numbers)
Free Text [Numeric]








<$15,000
$15,000-$24,999
$25,000-49,999
$50,000-74,999
$75,000-99,999
$100,000-149,999

For those who answer
“Other” for state

NSCH

NHIS
Slightly different
response categories than
NHIS

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX

Some people who are deaf or have serious difficulty
hearing use assistive devices to communicate by
phone. Are you deaf or do you have serious difficulty
hearing?
Are you blind or do you have serious difficulty
seeing, even when wearing glasses?






$150,000-199,999
$200,000 or higher
Yes
No




Yes
No

BRFSS 2022 CDIS.01
BRFSS 2022 CDIS.02

Because of a physical, mental, or emotional
 Yes
BRFSS 2022 CDIS.03
condition, do you have serious difficulty
 No
concentrating, remembering, or making decisions?
Do you have serious difficulty walking or climbing
 Yes
BRFSS 2022 CDIS.04
stairs?
 No
Do you have difficulty dressing or
 Yes
BRFSS 2022 CDIS.05
bathing?
 No
Because of a physical, mental, or emotional
 Yes
BRFSS 2022 CDIS.06
condition, do you have difficulty doing errands alone  No
such as visiting a doctor’s office or shopping?
[If the respondent skipped any questions in this section, they will receive the following message:]
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.
I.

The final questions ask about problems that may have bothered you over the past 2 weeks, followed by two
additional questions about you.

Question

Response Options

Over the last 2 weeks, how often have you been bothered by the following
problems?
Feeling nervous, anxious or on edge
 Not at all
 Several days
 More than half the
days
 Nearly every day
Not being able to stop or control worrying
 Not at all
 Several days
 More than half the
days
 Nearly every day

Worrying too much about different things





Not at all
Several days
More than half the
days

Taken From
GAD-7
GAD-7

GAD-7

GAD-7

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX

Trouble relaxing





Not at all
Several days
More than half the
days
Nearly every day
Not at all
Several days
More than half the
days
Nearly every day
Not at all
Several days
More than half the
days
Nearly every day
Not at all
Several days
More than half the
days
Nearly every day
Not difficult at all
Somewhat difficult
Very difficult
Extremely difficult






Becoming easily annoyed or irritable






Feeling afraid as if something awful
might happen







If you checked off any problems, how
difficult have these problems made it for
you to do your work, take care of things at
home, or get along with other people?





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

Nearly every day






Being so restless that it is hard to sit still

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.
Free text

GAD-7

GAD-7

GAD-7

GAD-7

GAD-7 [only asked of those
who endorse more than “not
at all” in this section]

New

New

You may decline to be re-contacted now or at any
time in the future.
[If the respondent skipped any questions in this section, they will receive the following message:]

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
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.

J.

Clinical Assessments
a. Ask Suicide Screening Questions (ASQ)
b. Yale Global Tic Severity Scale (YGTSS)

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
The following questions will be asked by a trained professional, not as part of the survey.
a.

Ask Suicide Screening Questions (ASQ) (these are in a separate REDCap form since they are not part of the
self-report survey; these questions will be asked by a healthcare provider or trained program staff member to
individuals with tic disorders aged 9-26 years with possible input from parent for children 9-17 years.

Question

Response Options

Taken From

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
ASQ
 No
 Refused to answer
2) In the past few weeks, have you felt that you or your family
 Yes
ASQ
would be better off if you were dead?
 No
 Refused to answer
3) In the past week, have you been having thoughts about
 Yes
ASQ
killing yourself?
 No
 Refused to answer
4) Have you ever tried to kill yourself?
 Yes
ASQ
 No
 Refused to answer
[If yes to 4,]
Free text
ASQ
4a) How?
4b) When?
The patient answered "No" to questions 1 through 4; therefore,
 Ask question #5
Incorporated
screening is complete, and it is not necessary to ask question
 Finish the ASQ
from ASQ
#5. No intervention is necessary; however, clinical judgment
instructions,
can always override a negative screen.
within skip
pattern. ASQ
instructions
Do you want to ask the patient question #5 (Are you having
included
thoughts of killing yourself right now?) or finish the ASQ?
below.
[If “Yes” or “Refused” to any of the above (Q1-Q4)] This patient is
 Yes
ASQ
considered a positive screen. Ask question #5 to assess acuity.
 No
5) Are you having thoughts of killing yourself right now?

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
[If yes to Q5]
5b) Please describe:
[If yes to Q5]
Patient is acute positive screen (imminent risk identified)

Open ended

ASQ

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/ (and
relevant local information)
[If no to Q5]
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
Open ended
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

ASQ

Form Approved
OMB NO. 0920-24EG
Exp. Date XX/XX/20XX
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

ID #:

Y G T S S
Yale Global Tic Severity Scale
Yale Child Study Center

October 1992 version

1

NAME:

TODAY'S DATE :

/

/

RATER:

MOTOR TIC SYMPTOM CHECKLIST
Description of Motor Tic Symptoms. Motor tics usually begin in childhood and are characterized by
sudden jerks or movements, such as forceful eye blinking or a rapid head jerk to one side or the other.
The same tics seem to recur in bouts during the day and are worse during periods of fatigue and/or stress.
Many tics occur without warning and may not even be noticed by the person doing them. Others are
preceded by a subtle urge that is difficult to describe (some liken it to the urge to scratch an itch). In
many cases it is possible to voluntarily hold back the tics for brief periods of time. Although any part of
the body may be affected, the face, head, neck, and shoulders are the most common areas involved. Over
periods of weeks to months, motor tics wax and wane and old tics may be replaced by totally new ones.
Simple motor tics can be described as a sudden, brief, "meaningless" movement that recurs in bouts (such
as excessive eye blinking or squinting). Complex motor tics are sudden, stereotyped (i.e., always done in
the same manner) semi-purposeful (i.e., the movement may resemble a meaningful act, but is usually
involuntary and not related to what is occurring at the time) movements that involve more than one
muscle group. There may often be a constellation of movements such as facial grimacing together with
body movements. Some complex tics may be misunderstood by other people (i.e., as if you were
shrugging to say "I don't know"). Complex tics can be difficult to distinguish from compulsions; however,
it is unusual to see complex tics in the absence of simple ones. Often there is a tendency to explain away
the tics with elaborate explanations (e.g., “I have hay fever that has persisted” even though it is not the
right time of year). Tics are usually at their worst in childhood and may virtually disappear by early
adulthood, so if you are completing this form for yourself, it may be helpful to talk to your parents, an
older sibling, or a relative, as you answer the following questions.
• Age of first motor tics? ________________ years old
• Describe first motor tic: ________________________________________________
• Was tic onset sudden or gradual?

_______________________________________

• Age of worst motor tics? ________________ years old

Motor Tic Symptom Checklist
In the boxes on the left below, please check with a mark (x) the tics the patient
1) has EVER experienced
2) is CURRENTLY experiencing (during the past week)
State AGE OF ONSET (in years) if patient has had that behavior.
Also, in the tic descriptions below, please circle or underline the specific tics that the patient has
experienced (circle or underline the words that apply).
2

Ever

[In Years]
CurAge
rent
of
onset

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.
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.
-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.
broadening the nostrils as if smelling something, smiling, or other
gestures involving the mouth, holding funny expressions, or
sticking out the tongue.
-head jerks/movements.
touching the shoulder with the chin or lifting the chin up.
throwing the head back, as if to get hair out of the eyes.
-shoulder jerks/movements.
jerking a shoulder.
shrugging the shoulder as if to say "I don't know."
-arm or hand movements.
quickly flexing the arms or extending them, nail biting, poking with
fingers, or popping knuckles.
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.
-leg, foot or toe movements.
kicking, skipping, knee-bending, flexing or extension of the ankles;
shaking, stomping or tapping the foot.
taking a step forward and two steps backward, squatting, or deep
knee-bending.

3

Ver

Ever

Current

Age
of
onset

The patient has experienced, or others have noticed, involuntary and
apparently purposeless bouts of:

Ver

-abdominal/trunk/pelvis movements.
tensing the abdomen, tensing the buttocks.
-other simple motor tics.
Please write example(s):

-other complex motor tics.
touching
tapping
picking
evening-up
reckless behaviors
stimulus-dependent tics (a tic which follows, for example, hearing a
particular word or phrase, seeing a specific object, smelling a
particular odor). Please write example(s):
____________________________________________________________
rude/obscene gestures; obscene finger/hand gestures.
unusual postures.
bending or gyrating, such as bending over.
rotating or spinning on one foot.
copying the action of another (echopraxia)
sudden tic-like impulsive behaviors. Please describe:
____________________________________________________________
tic-like behaviors that could injure/mutilate others. Please describe:
____________________________________________________________
self-injurious tic-like behavior(s). Please describe:
____________________________________________________________
-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:
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
___________________________________________________________

4

Phonic (Vocal) Tics
Description of Phonic (or Vocal) Tic Symptoms Phonic tics usually begin in childhood,
typically after motor tics have already started, but they can be the first tic symptoms. They are
characterized by a sudden utterance of sounds such as throat clearing or sniffing. The same
tics seem to recur in bouts during the day and are worse during periods of fatigue and/or
stress. Many tics occur without warning and may not even be noticed by the person doing
them. Others are preceded by a subtle urge that is difficult to describe (some liken it to the
urge to scratch an itch). In many cases it is possible to voluntarily hold back the tics for brief
periods of time. Over periods of weeks to months, phonic tics wax and wane and old tics may
be replaced by totally new ones. Simple phonic tics are utterances of fast, meaningless sounds
whereas complex phonic tics are involuntary, repetitive, purposeless utterances of words,
phrases or statements that are out of context, such as uttering obscenities (i.e., coprolalia), or
repeating over and over again what other people have said (i.e., echolalia). Complex tics can
be difficult to distinguish from compulsions; however, it is unusual to see complex tics in the
absence of simple ones. Often there is a tendency to explain away the tics with elaborate
explanations (e.g., “I have hay fever that has persisted” even though it is not the right time of
year). Tics are usually at their worst in childhood and may virtually disappear by early
adulthood, so if you are completing this form for yourself, it may be helpful to talk to your
parents, an older brother or sister, or older relative, as you answer the following questions.

• Age of first vocal tics? ________________ years old.
• Describe first vocal tic: ________________________________________________
• Was tic onset sudden or gradual? _________________________________________
• Age of worst vocal tics? ________________ years old.

5

Phonic Tic Symptom Checklist
In the boxes on the left below, please check with a mark (x) the tics the patient
1) has EVER experienced
2) is CURRENTLY experiencing (during the past week)
State AGE OF ONSET (in years) if patient has had that behavior.
Also, in the tic descriptions below, please circle or underline the specific tics that the patient has
experienced (circle or underline the words that apply).
[In Years]

Ever Current

Age The patient has experienced, or others have noticed, bouts of
of involuntary and apparently purposeless utterance of:
onset
-coughing.
-throat clearing.
-sniffing.
-whistling.
-animal or bird noises.
-Other simple phonic tics. Please list:
-syllables. Please list:
-words. Please list:
-rude or obscene words or phrases. Please list:
-repeating what someone else said, either sounds, single words or
sentences. Perhaps repeating what’s said on TV (echolalia).
-repeating something the patient said over and over again
(palilalia).
-other tic-like speech problems, such as sudden changes in volume
or pitch. Please describe:

Describe any other patterns or sequences of phonic tic behaviors:

6

Ver

SEVERITY RATINGS
Motor

NUMBER
None
Single tic
Multiple discrete tics (2-5)
Multiple discrete tics (>5)
Multiple discrete tics plus as least one orchestrated pattern of multiple simultaneous or
sequential tics where it is difficult to distinguish discrete tics
Multiple discrete tics plus several (>2) orchestrated paroxysms of multiple simultaneous
or sequential tics that where it is difficult to distinguish discrete tics

o
o
o
o
o

o
o
o
o
o

0
1
2
3
4

o

o

5

Motor

FREQUENCY
NONE No evidence of specific tic behaviors
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 to 10 minutes at most.

ABSENT
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.
MILD INTENSITY Tics are not more forceful than comparable voluntary actions or
utterances and are typically not noticed because of their intensity.
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.

7

Phonic

o
o

o
o

0
1

o

o

2

o

o

3

o

o

4

o

o

5

Motor

INTENSITY

Phonic

Phonic

o
o

o
o

0
1

o

o

2

o

o

3

o

o

4

o

o

5

Motor

COMPLEXITY
NONE If present, all tics are clearly "simple" (sudden, brief, purposeless) in character.
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, speech atypicalities, 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).

o
o
o

o
o
o

0
1
2

o

o

3

o

o

4

o

o

5

Motor

INTERFERENCE
NONE
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.
SEVERE When tics are present, they frequently disrupt intended action or
communication.

8

Phonic

Phonic

o
o
o
o

o
o
o
o

0
1
2
3

o

o

4

o

o

5

IMPAIRMENT
NONE
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).
MARKED Tics associated with major difficulties in self-esteem, family life, social acceptance, or
school or job functioning.
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).

o
o

0
10

o

20

o

30

o

40

o

50

SCORING
Number
(0-5)

Frequency
(0-5)

Intensity
(0-5)

Complexity
(0-5)

Interference
(0-5)

Motor Tic
Severity
Vocal Tic
Severity

Total Tic Severity Score = Motor Tic Severity + Vocal Tic Severity (0-50)

Total Yale Global Tic Severity Scale Score (Total Tic Severity Score +
Impairment) (0-100)

9

Total
(0-25)