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OMB No. 0920-xxxx
Exp. Date: xx/xx/xxxx
Attachments 7e-7f-7g-7h: Second follow-up Survey of SEED 1 Adult Children
Public reporting burden of this collection of information is estimated to average 30 minutes per response, 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 D-74, Atlanta, GA 30333: ATTN: PRA (0920-xxxx).
SEED Follow-Up Study: Second Follow-up Survey of Young
Adults (Self-Report)
Contents
A. Exit from High School .............................................................................................................................................2
B. Living Situation .......................................................................................................................................................3
C. Daily Activities and Social Participation .................................................................................................................3
D. Vocational Support and Training ...........................................................................................................................5
E. Job and Work Experience .......................................................................................................................................7
F. Financial Support ................................................................................................................................................. 10
G. Health & Health Care Service Use and Need ...................................................................................................... 11
H. Educational & Developmental Services .............................................................................................................. 14
I. Romantic Relationships and Sexual Orientation, and Gender Identity ................................................................ 15
J. Sex Education and Behavior ................................................................................................................................. 16
K. Substance Use and Behaviors.............................................................................................................................. 18
L. Beliefs & Interests ................................................................................................................................................ 19
1
A. Exit from High School
1. When did you complete your high school education?
Month
Year
I did not attend high school (Skip to Section B, Living Situation)
2. When you left high school, did you…
Receive a regular diploma
Receive an occupational diploma
Receive a certificate of completion
Take a test and receive a GED without completing all classes
Drop out or stop going
Get expelled (or suspended but did not return)
I did not attend high school
Other, specify: __________________________________
3. Since leaving high school, have you… (Check all that apply)
Attended a 2 year or community college
Graduated with a diploma, certificate, or license from a 2 year or community college
Attended a vocational, business, or technical school after high school
Graduated with a diploma, certificate, or license from a vocational, business, or technical school
Attended a 4-year college
Graduated with a degree, certificate, or license from a 4-year college
Attended a graduate program (e.g., master’s or doctoral program)
Graduated with an advanced degree (e.g., master’s or doctoral degree)
4. Are you currently enrolled in college or planning to attend college?
No
Yes, Part-time
Yes, Full-time
2
B. Living Situation
1. Where do you currently live or what is your current living situation? (Check only one)
Independently (alone) with some assistance
Independently (alone) with no assistance
Independently (with spouse or roommate)
With parent(s) or foster parent(s)
With an adult family member who is not a parent (e.g., sibling, aunt, uncle, cousin, etc.)
Specify relationship: ____________
With a legal guardian who is not a family member
In a group home within the community
In a residential facility separated from the community
Other (Specify, please print): ____________________________
C. Daily Activities and Social Participation
1. Since leaving high school, have you participated in:
Yes
No
Don’t
know
A sports team or taken sport lessons?
Any clubs or organizations?
Any other organized activities or lessons, such as music, dance or
language?
Any type of community service or volunteer work at school, church, or in
the community?
Any work, including regular jobs as well as babysitting, cutting grass, or
other occasional work?
2. IN THE LAST 6 MONTHS, how often do you usually do the following:
Never
At
least
once
Every
other
month
Monthly
Weekly
Daily
Get together socially with friends or neighbors?
Call or text friends on the phone?
Use email, instant messaging, Skype, texting,
Facebook/Instagram/Snapchat messaging or
taken part in chat rooms?
3
Gotten together with ANY relatives, not
including those who live with you?
Gone to church, temple, or another place of
worship for services or other activities?
Gone to a show or movie, sports events, club
meeting, or another group event?
Gone out to eat at a restaurant?
3. DURING THE PAST MONTH, on how many days have you done a total of 30 minutes or more of physical
activity, which was enough to raise your breathing rate? This may include sports, exercise, and brisk walking
or cycling for recreation or to get to and from places but should not include housework or physical activity
that may be part of your job.
Number of days of exercise during the past month: ____
4. ON AN AVERAGE WEEKDAY, about how much time do you usually spend in front of a TV
watching TV programs or movies, including streaming services such as Netflix, Hulu, Apple+?
None
Less than 1 hour
1 hour
2 hours
3 hours
4 or more hours
I don’t know
5. ON AN AVERAGE WEEKDAY, about how much time do you usually spend with computers,
tablets, cell phones, handheld video games, and other electronic devices, doing things other
than schoolwork or watching videos on YouTube/TikTok, TV shows, or movies?
None
Less than 1 hour
1 hour
2 hours
3 hours
4 or more hours
I don’t know
4
D. Vocational Support and Training
The next questions are about services or training you may have received after high school exit to help you find
and/or keep a job.
1. After you exited high school, did you receive any of the following services? (Check all the apply)
Service
Yes
No
a.
Testing to find out your work interests or abilities.
Don’t
know
b.
Training in specific job skills, for example food services, computer
skills, or training for another kind of job.
Training in basic skills needed for work, like counting change, telling
time, or using transportation to get to work.
Career counseling, like help in figuring out jobs that might best suit
you.
Help in learning how to search for available job positions online,
write a resume, or prepare for a job interview.
Job shadowing, such as visiting a workplace and watching the way a
job is done.
Apprenticeships or internships.
Other services or training?
Specify: _____________________________
c.
d.
e.
f.
g.
h.
2. Do you think you are getting enough job or career training?
Yes
No
Don’t know
3. How useful do you think job or career training is in helping you get a job?
Very useful
Somewhat useful
Not very useful
Not at all useful
Don’t know
4. Do you think you need job training or additional training that is not being provided now?
Yes
No (Skip to Section E)
Don’t know (Skip to Section E)
5. What other kinds of job training or help do you think you need? (Check all that apply)
5
Testing to find out your work interests or abilities
Training in specific job skills, for example food services, computer skills, or training for another kind
of job
Training in basic skills needed for work like counting change, telling time, or using transportation to
get to work
Career counseling like help in figuring out jobs you might be suited to
Help in finding or applying for a job such as learning how to search for available job positions online,
write a resume, or prepare for a job interview
Job shadowing, visiting a workplace and watching the way the job is done
Apprenticeships or internships
Other, specify: __________________________
Don’t know
6
E. Job and Work Experience
1. At any time since leaving high school have you worked for pay other than work around the house?
Yes (Skip to question 3)
No
2. You have told us you are not currently working for pay. Please help us understand your situation.
Check all that apply then skip to Section F , Financial Support.
☐
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☐
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Want to work but can't find work
Have tried to work but faced discrimination or other difficulties with employers
because of a disability
Do not wish to work at present (taking care of family members, a stay-at-home
parent, etc.)
Not able to work because it would interfere with federal or state benefits (such as
disability payments)
Not able to work because the workplace would be too challenging (because of ASD
or other health or mental health issues)
Have an unpaid internship or volunteer position
Full-time or part-time college student
Other (Specify:_____________________________________________________)
Skip to Section F, Financial Support
3. What is the longest time you have worked at a particular job since leaving high school?
Number of
Weeks
OR
Number of
Months
OR
Number of
Years
OR
☐ Don’t Know
4. For your current or most recent job, how many hours per week do/did you work on average?
1 - 9 hours
10 - 19 hours
20 - 29 hours
30 - 39 hours
40 or more hours
5. If you work(ed) part-time, or less than 40 hours per week at your current or most recent job, do you
work part-time because you want to, or would you rather work full-time?
Does not apply, I work(ed) full time
I want to work part-time
I would rather work full-time
Other, specify __________________
7
6. For your current or most recent job, about how much are/were you paid per hour, per month, or per
year at this job?
$
per hour
OR
per month
$
OR
$
7. Did you receive benefits from this job? (Check all that apply)
Health Insurance
Vacation/Sick leave
Retirement account
Other insurance (e.g., disability, life, dental, vision)
Tuition assistance
None
8. For your current or most recent job, what was the work situation?
☐
☐
☐
☐
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Regular paid employment (with no help or support)
Supported employment (you may have a job coach or other special help at work)
Work in a business with a group of other people with special needs, all under
supervision of an agency serving people with disabilities
Day program that includes paid work
Paid internship or work study program
Other, specify: ________________
9. How satisfied are you with the work situation at your current or most recent job?
Very satisfied
Satisfied
Neither satisfied nor dissatisfied
Dissatisfied
Very dissatisfied
10. For your current or most recent job, what is the job title?
Job Title: _____________________________________
11. Did you find your current or most recent job yourself or did you have help?
8
per year
Found the job on my own
Found the job with help from an agency (e.g., a job coach or vocational rehab)
Found the job with help from a family member or friend?
Other, specify: _______________________________________________
12. Have you ever applied for any accommodations or supports to help you keep a job?
Yes, applied and received job accommodations and/or supports
Yes, applied but did NOT receive job accommodations and/or supports (Skip to Section F,
Financial Support)
No, never applied for job accommodations or supports (Skip to Section F, Financial Support)
13. If you have ever received accommodations or supports to help maintain employment, how useful were
these services?
Not useful at all (i.e., did not provide any additional advantage keeping job)
Slightly useful (i.e., helped a little for keeping job)
Useful (i.e., helped a good deal for keeping job)
Very useful (i.e., made the difference between keeping or losing a job)
9
F. Financial Support
1. How much do you rely on your family (such as parents and siblings) for financial support such as paying
your bills, housing, transportation, spending money for entertainment, or other financial?
My family does not provide any financial support for me at all.
My family provides less than half of my financial support. They help me financially sometimes.
My family provides about half of my financial support.
My family provides more than half (but not all) of my financial support.
My family provides all my financial support.
2. What federal or state benefits do you currently receive? (Check all that apply or "none" if none apply)
Social Security Disability Insurance (SSDI)
☐
Supplemental Security Income (SSI)
☐
State disability programs that use only state and/or local funds
☐
Medicaid (for health insurance)
☐
Medicare
Medicaid HCBS (Home and Community Based Services) waiver or Developmental
Disability waiver
Employment assistance or job support (sometimes called "Vocational Rehabilitation"
or "VR")
Section 8 Housing
☐
☐
Transportation services for people with disabilities
☐
Other, specify:________________________________________________________
☐
None
☐
10
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G. Health, Mental Health, & Health Care Service Use and Need
1. Which of the following best describes your general health? Please mark ONE Box.
Excellent
Very good
Good
Fair
Poor
2. OVER THE LAST 2 WEEKS, how often have you been bothered by the following problems?
Feeling anxious, nervous, or on-edge.
Not at
all
Several
days
More than
half the days
Nearly every
day
Not being able to stop or control worrying.
3. OVER THE LAST 2 WEEKS, how often have you been bothered by the following problems?
Little interest or pleasure in doing things.
Not at
all
Several
days
More than
half the days
Nearly every
day
Feeling down, depressed, or hopeless
4. Have you ever seriously thought about committing suicide?
Yes
No
5. Have you ever made a plan for committing suicide?
Yes
No
6. Have you ever attempted suicide?
Yes
No
7. Since leaving high school, was there any time when you needed health care, but you did not receive it?
By health care, we mean medical care as well as other kinds of care like dental care, vision care, and
mental health services.
11
Yes
No (Skip to question 10)
8. If yes, which types of care were NOT received? (Check ALL that apply)
Dental Care
Hearing Care
Medical care, routine preventative
Medical care, sick or urgent care
Medical care, hospital emergency
Medical care, specialist
Medical services for diagnosis or evaluation related to a disability
Mental Health Services, counseling, or psychological services
Vision Care
Other, Specify _________
9. Which of the following contributed to you not receiving needed health care services:
I did not have health insurance that covered the services needed
I was not eligible for the services
The services I needed were not available in my area
There were problems getting an appointment when I needed one
There were problems with getting transportation
The (clinic/doctor’s) office wasn’t open when I needed care
There were issues related to cost
There were issues related to COVID-19 (e.g., concerned about being around
others at doctor’s office who may have been exposed to COVID-19)
Other (Specify:________________________)
Yes
No
10. DURING THE PAST 12 MONTHS, have you had a chance to visit or speak with a doctor or other health
care provider alone or privately, without your parents or another adult in the room?
Yes
No
11. During any visit in the past 12 months did a doctor or other health care provider ask you if you were
sexually active?
Yes
No
Don’t remember
The next two questions are only for participants who were born female. If you were born male, skip to
question 14.
12
12. DURING THE PAST 12 MONTHS, did you receive any of the following services from a doctor or health
care provider?
Information or advice about birth control
A method of birth control or a prescription for birth control
Information or advice about other sexually transmitted diseases (STDs), such as gonorrhea,
chlamydia, syphilis, herpes, HIV, AIDS, or HPV
Testing for STDs
Treatment for STDs
Information or advice about using condoms to prevent STDs
None of the above
13. Have you ever received:
A Pap test - where a doctor or nurse put an instrument in the vagina and took a sample to check for
abnormal cells that could turn into cervical cancer?
An HPV test - where a doctor or nurse put an instrument in the vagina and took a sample to
test for the HPV virus?
The cervical cancer vaccine, also known as the HPV shot, Cervarix, or Gardasil?
None of the above
The next question is for participants who were born male. If you were born female answer questions 12
and 13 then skip to Section H, Educational & Developmental Services
14. DURING THE PAST 12 MONTHS, did you receive any of the following services from a doctor or health
care provider?
Information or advice about your partner using methods of birth control
Information or advice about HIV or AIDS
Information or advice about other sexually transmitted diseases (STDs), such as gonorrhea,
chlamydia, syphilis, herpes or AIDS, HPV
Testing for STDs
Treatment for STDs
Information or advice about using condoms to prevent STDs
Information or advice about using condoms to prevent pregnancy
None of the above
13
H. Educational & Developmental Services
1. Since leaving high school, have you received any of the services listed in the table below?
Do not include services/help received from family or friends.
Yes, received
after high school
No, did not receive
after high school
If no, did you
need this service?
☐
☐
☐ Yes ☐ No
Educational assistance or tutoring.
☐
Reader or interpreter, such as a sign language
interpreter.
☐
☐ Yes ☐ No
☐
☐
☐ Yes ☐ No
Independent living or occupational therapy (like help
with doing things such as managing money, cooking,
or housekeeping).
☐
☐
☐ Yes ☐ No
Childcare services or parenting skills training.
☐
☐
☐ Yes ☐ No
Social work services.
☐
☐
☐ Yes ☐ No
☐
☐
☐ Yes ☐ No
☐
☐
☐ Yes ☐ No
Financial aid, like paying for college classes or
training.
Physical therapy.
☐
Devices or assistive technology services (like a
special calculator, reading machine, or
communication device).
Other services (Please specify):
☐
☐ Yes ☐ No
2. Overall, how satisfied have you been with all services your child has received since
leaving high school?
Very dissatisfied
Dissatisfied
Neither satisfied nor dissatisfied
Satisfied
Very Satisfied
14
I. Romantic Relationships, Sexual Orientation, and Gender Identity
1.
Do you consider yourself….
Male
Female
Non-binary
Other, please specify:______________________
2. Do you consider yourself transgender?
Yes, transgender, male-to-female
Yes, transgender, female-to-male
Yes, transgender, nonconforming
No
Don’t know
3. Which of the following best describes how you think of yourself?
Heterosexual or straight (attracted to people of the opposite sex)
Gay or lesbian (attracted to people of the same sex)
Bisexual (attracted to people of both sexes)
Pansexual (attracted to people of any gender identity regardless of their biological sex)
Asexual (not sexually attracted to other people)
I describe my sexual identity some other way
I am not sure about my sexual identity (questioning)
I do not know what this question is asking
4.
Have you ever been in a relationship with a romantic partner?
Yes
No
5.
Are you currently dating or in a relationship with a romantic partner?
Yes (Skip to Section J)
No
6.
How much would you like to have a romantic relationship in the next year?
Not at all
Very little
Somewhat
Quite a bit
Very much
15
J. Sex Education and Behavior
The next few questions are about your sexual education and behavior. Remember that all answers you give are
kept private and will not be shared with anyone without your written consent. Also remember that you can skip
any questions that make you feel uncomfortable.
7. Please tell me where you received formal sex education or any information on the following topics
(check all that apply).
School
Church
Community
Center
Doctor’s
office
Health
Center
Friends
Online,
Internet
Never have
received
instruction or
information
on this topic
☐
☐
☐
☐
☐
☐
☐
☐
Methods of birth control
☐
☐
☐
☐
☐
☐
☐
☐
Where to get birth control
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
How to prevent HIV/AIDS
☐
☐
☐
☐
☐
☐
☐
☐
How to use a condom
☐
☐
☐
☐
☐
☐
☐
☐
How to say no to sex
Sexually transmitted
diseases (STDs)
Some other type of
education or information
Please specify type of education/information and place received:
8. Have you ever had sex, either with a same or opposite sex partner?
Yes
No (Skip to question 13)
9. The last time you had sex with a partner, what birth control method or methods did you or your partner
use? (Check all that apply)
No method was used to prevent pregnancy
Birth control pills (Do not count emergency contraception such as Plan B or the "morning after"
pill.)
Condoms
An IUD (such as Mirena or ParaGard) or implant (such as Implanon or Nexplanon)
A shot (such as Depo-Provera), patch (such as Ortho Evra), or birth control ring (such as
NuvaRing)
Withdrawal
Some other method
Not sure
16
10. Did you drink alcohol or use drugs before you had sex the last time with any partner (same or opposite
sex)?
Yes
No
11. How old were you when you had sex for the first time with any partner (same or opposite sex)?
Less than 15 years old
15 to 17 years old
18 years old or older
12. DURING THE LAST 12 MONTHS, with how many people did you have sex (same or opposite sex)?
I have had sex, but not during the past 12 months
1 person
2 to 3 people
4 or more people
13. Has anyone ever forced you to do sexual things that you did not want to do? Examples might include
unwanted kissing or touching, physical pressure (being hit, slammed into something, or injured with an
object or weapon) or non-physical pressure (verbal pressure, threats of harm, or by being given alcohol
or drugs)
Yes
No
Prefer not to say
17
K. Substance Use and Behaviors
14. Think about the statement, “I did too much.” IN THE LAST 12 MONTHS, how often did this apply to
your…
Alcohol use
Tobacco or Nicotine use
Cannabis use
Cocaine use
Opioid use
Gambling
Shopping
Video gaming
Over-eating
Sexual activity
Over-working
None of
the time
A little of
the time
Some of
the time
Most of
the time
All of the
time
Never used
or N/A
☐
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☐
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☐
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☐
☐
☐
☐
☐
☐
18
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
☐
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☐
☐
☐
☐
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L. Beliefs & Interests
15. While some of these questions will use words such as “spirituality” please answer them in terms of your
own personal belief system, whether it be religious, spiritual or personal.
To what extent does any connection to a
spiritual being or force help you to get
through hard times?
To what extent does any connection to a
spiritual being or force help you to tolerate
stress?
To what extent does any connection to a
spiritual being or force help you to
understand others?
To what extent does any connection to a
spiritual being or force provide you with
comfort / reassurance?
Not at
all
A little
A moderate
amount
A lot
An extreme
amount
☐
☐
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16. What particular abilities or strengths do you have? Check all that apply or "none of the above" if none
apply.
An ability to think in unusual, creative ways
An ability to focus intensely on certain topics
Honesty
A sense of justice
A different way of experiencing the world
Ability in mathematics, science, or computers
Ability in art or music
A very good memory for certain topics
An ability to focus on small details
An incredible imagination
Kindness
Other, specify: _____________________________________
None of the above
17. Do you have an intense area of interest or focus? (Sometimes this is referred to as a “special interest”)
No (Skip to end of survey)
Yes
18. What type of special interest or topic do you have? Check all that apply if you have more than one.
Modes of transportation (such as trains, automobiles, aircraft)
History
Science (such as astronomy, geology)
19
Science fiction or fantasy (in books, films, video games)
Computers
Mathematics or numbers
Animals (such as dogs, fish, horses)
Movies
Cartoons or anime
Maps, calendars, or dates
Timetables or schedules
Dinosaurs, monsters, or fictional creatures
Music
Art
Sports
Sewing or crafts
Other, specify: _______________________________
19. How does your special interest affect your life? Check all that apply or "none of the above" if none
apply.
My job or career involves my special interest.
My studies in school or college are (or were) related to my special interest.
I have relationships based on my special interest. I make friends or join groups focused on the same
interest.
I enjoy activities and hobbies relating to my special interest.
My special interest sometimes gets in the way of success at work, school, or in relationships.
The special interest has gotten me in trouble. (For example, it may have led to addictive behavior or
breaking the law.)
Other, specify: _________________________________
None of the above
You have reached the end of the survey.
Thank you for participating!
20
WHOQOL-BREF
June 1997
U.S. Version
University of Washington
Seattle, Washington
United States of America
Emblem...Soul Catcher: a Northwest Coast Indian symbol of physical and mental well-being. Artist: Marvin Oliver
WHOQOL-BREF
About You
Before you begin we would like to ask you to answer a few general questions
about yourself by circling the correct answer or by filling in the space
provided.
1. What is your gender
Male
Female
2. What is your date of birth?
/
Day
3. What is the highest education you
received?
/
Month
Year
None at all
Elementary School
High School
College
4. What is your marital status?
Single
Married
Living as Married
Separated
Divorced
Widowed
5. Are you currently ill?
Yes
No
6. If something is wrong with
your health, what do you
think it is?
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
illness/problem
2
Instructions
This questionnaire asks how you feel about your quality of life, health, or other
areas of your life. Please answer all the questions. If you are unsure about
which response to give to a question, please choose the one that appears most
appropriate. This can often be your first response.
Please keep in mind your standards, hopes, pleasures and concerns. We ask
that you think about your life in the last two weeks. For example, thinking
about the last two weeks, a question might ask:
Not at all
For office
use
Do you get the kind of
support from others that
you need?
1
(Please circle the number)
A little
Moderately
Mostly
2
3
Completely
4
5
You should circle the number that best fits how much support you got from
others over the last two weeks. So you would circle the number 4 if you got a
great deal of support from others. ο
Not at all
For office
use
Do you get the kind of
support from others that
you need?
1
(Please circle the number)
A little
Moderately
Mostly
2
3
4
Completely
5
You would circle number 1 if you did not get any of the support that you
needed from others in the last two weeks. ο
Not at all
For office
use
Do you get the kind of
support from others that
you need?
1
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
(Please circle the number)
A little
Moderately
Mostly
2
3
4
Completely
5
3
Please read each question, assess your feelings, and circle the number on the
scale that gives the best answer for you for each question.
Very poor
For office
use
G1 / G1.1
1.
How would you
rate your quality of
life?
1
Very
dissatisfied
For office
use
G4 / G2.3 2.
How satisfied are
you with your
health?
1
(Please circle the number)
Poor
Neither poor
Good
nor good
2
3
4
(Please circle the number)
Dissatisfied
Neither
Satisfied
satisfied nor
dissatisfied
2
3
Very Good
5
Very satisfied
4
5
The following questions ask about how much you have experienced certain
things in the last two weeks.
Not at all
For office
use
(Please circle the number)
A little
A moderate Very much
amount
An extreme
amount
F1.4 /
F1.2.5
3.
To what extent do
you feel that
physical pain
prevents you from
doing what you
need to do?
1
2
3
4
5
F11.3 /
F13.1.4
4.
How much do you
need any medical
treatment to
function in your
daily life?
1
2
3
4
5
F4.1 /
F6.1.2
5.
How much do you
enjoy life?
1
2
3
4
5
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
4
Not at all
For office
use
F24.2 /
F29.1.3
6.
To what extent do
you feel your life to
be meaningful?
1
Not at all
For office
use
(Please circle the number)
A little
A moderate Very much
amount
2
3
An extreme
amount
4
(Please circle the number)
Slightly
A Moderate Very much
amount
5
Extremely
F5.2 /
F7.1.6
7.
How well are you
able to
concentrate?
1
2
3
4
5
F16.1 /
F20.1.2
8.
How safe do you
feel in your daily
life?
1
2
3
4
5
F22.1 /
F27.1.2
9.
How healthy is
your physical
environment?
1
2
3
4
5
The following questions ask about how completely you experience or were
able to do certain things in the last two weeks.
Not at all
For office
use
(Please circle the number)
A little
Moderately
Mostly
Completely
F2.1 /
F2.1.1
10. Do you have
enough energy for
everyday life?
1
2
3
4
5
F7.1 /
F9.1.2
11. Are you able to
accept your bodily
appearance?
1
2
3
4
5
F18.1 /
F23.1.1
12. Have you enough
money to meet
your needs?
1
2
3
4
5
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
5
Not at all
For office
use
(Please circle the number)
A little
Moderately
Mostly
Completely
F20.1 /
F25.1.1
13. How available to
you is the
information that
you need in your
day-to-day life?
1
2
3
4
5
F21.1 /
F26.1.2
14. To what extent do
you have the
opportunity for
leisure activities?
1
2
3
4
5
Very poor
For office
use
F9.1 /
F11.1.1
15. How well are you
able to get around?
1
(Please circle the number)
Poor
Neither poor
Well
nor well
2
3
Very well
4
5
The following questions ask you to say how good or satisfied you have felt
about various aspects of your life over the last two weeks.
Very
dissatisfied
For office
use
(Please circle the number)
Dissatisfied
Neither
Satisfied
satisfied nor
dissatisfied
Very
satisfied
F3.3 /
F4.2.2
16. How satisfied are
you with your
sleep?
1
2
3
4
5
F10.3 /
F12.2.3
17. How satisfied are
you with your
ability to perform
your daily living
activities?
1
2
3
4
5
F12.4 /
F16.2.1
18. How satisfied are
you with your
capacity for work?
1
2
3
4
5
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
6
Very
dissatisfied
For office
use
(Please circle the number)
Dissatisfied
Neither
Satisfied
satisfied nor
dissatisfied
Very
satisfied
F6.4 /
F8.2.2
19. How satisfied are
you with yourself?
1
2
3
4
5
F13.3 /
F17.2.3
20. How satisfied are
you with your
personal
relationships?
1
2
3
4
5
F15.3 /
F3.2.1
21. How satisfied are
you with your sex
life?
1
2
3
4
5
F14.4 /
F18.2.5
22. How satisfied are
you with the
support you get
from your friends?
1
2
3
4
5
F17.3 /
F21.2.2
23. How satisfied are
you with the
conditions of your
living place?
1
2
3
4
5
F19.3 /
F24.2.1
24. How satisfied are
you with your
access to health
services?
1
2
3
4
5
F.23.3 /
F28.2.2
25. How satisfied are
you with your
mode of
transportation?
1
2
3
4
5
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
7
The follow question refers to how often you have felt or experienced certain
things in the last two weeks.
For office
use
F8.1 /
F10.1.2
Never
26. How often do you
have negative
feelings, such as
blue mood, despair,
anxiety,
depression?
(Please circle the number)
Quite
Very
Seldom
often
often
1
Did someone help you to fill out this
form? (Please circle Yes or No)
2
Yes
3
Always
4
5
No
How long did it take to fill out this
form?
THANK YOU FOR YOUR HELP
WHOQOL-BREF, Questionnaire, June 1997, Updated 1/10/2014
8
DOMAIN SCORES
Domains
WHOQOL-100 Facets
Raw domain score
Raw score range
12 - 60
48
Domain 1: Physical
Facet 1 + Facet 2 + Facet 3
Domain 2: Psychological
Facet 4 + Facet 5 + Facet 6 +
Facet 7 + Facet 8
20 – 100
80
Domain 3: Level of Independence
Facet 9 + Facet 10 + Facet 11 +
Facet 12
16 – 80
64
Domain 4: Social relationships
Facet 13 + Facet 14 + Facet 15
12 – 60
48
Domain 5: Environment
Facet 16 + Facet 17 + Facet 18 +
Facet 19 + Facet 20 + Facet 21+
Facet 22 + Facet 23
32 – 160
128
Domain 6: Spirituality / Religion / Personal beliefs
Facet 24
4 – 20
16
TRANSFORMATION OF SCALE SCORES
The next step involves transforming each raw scale score to a 0-100 scale using the
formula shown below:
(Actual raw score - lowest possible raw score)
Transformed Scale =
× 100
Possible raw score range
where “Actual raw score” is the values achieved through summation, “lowest possible raw score”
is the lowest possible value that could occur through summation (this value would be 4 for all
facets), and “Possible raw score range” is the difference between the maximum possible raw
score and the lowest possible raw score (this value would be 16 for all facets: 20 minus 4).
This transformation converts the lowest and highest possible scores to zero and 100,
respectively. Scores between these values represent the percentage of the total possible score
achieved. The WHOQOL-100 scores from other Centers may not be transformed to the 0-100
scale. The U.S.WHOQOL instruments and scoring programs have used this transformation to
provide comparative data for interpretation.
Example: A Facet 1 “Pain and discomfort” raw score of 15 would be transformed as follows:
(15 - 4)
Transformed Scale =
×100 = 68.75
16
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32
WHOQOL-BREF Scoring
The WHOQOL-Bref, still in field trials, is a subset of 26 items taken from the
WHOQOL-100. The same steps for the scoring WHOQOL-100 should be followed to achieve
scores for the Bref. Although scoring the Bref is identical to scoring the WHOQOL-100, there
are some differences that need to be addressed:
•
The WHOQOL-Bref does not have facet scores
•
Mean substitutions are recommended for Domain 1 Physical Health and Domain 4
Environment if no more than one item is coded missing
•
Only three items need to be reversed before scoring
The WHOQOL-Bref (Field Trial Version) produces a profile with four domain scores and
two individually scored items about an individual’s overall perception of quality of life and
health. The four domain scores are scaled in a positive direction with higher scores indicating a
higher quality of life. Three items of the Bref must be reversed before scoring. They can be seen
in Table 9, indicated by the “- (reverse)” denotation in the Direction of scaling column.
TABLE 9. Scoring Domains of the WHOQOL-BREF
Domains and questions
236/BREF
Overall Quality of Life and General Health
G1.1/B1
How would you rate your quality of life?
G2.3/B2
How satisfied are you with your health?
Domain 1
Physical Health
F1.2.5/B3
To what extent do you feel that physical pain prevents you from
doing what you need to do?
F13.1.4/B4
How much do you need any medical treatment to function in
your daily life?
F2.1.1/B10
Do you have enough energy for everyday life?
F11.1.1/B15
How well are you able to get around?
F4.1.1/B16
How satisfied are you with your sleep
F12.2.3/B17
How satisfied are you with your ability to perform your daily
living activities?
F16.2.1/B18
How satisfied are you with your capacity for work?
Domain 2
Psychological
F6.1.2/B5
How much do you enjoy life?
F29.1.3/B6
To what extent do you feel your life to be meaningful?
F7.1.6/B7
How well are you able to concentrate?
F9.1.2/B11
Are you able to accept your bodily appearance?
F8.2.1/B19
How satisfied are you with yourself?
F10.1.2/B26
How often do you have negative feelings such as blue mood,
despair, anxiety, depression?
Domain 3
Social relationships
F17.1.3/B20
How satisfied are you with your personal relationships?
F3.2.1/B21
How satisfied are you with your sex life?
F18.2.5/B22
How satisfied are with the support you get from your friends?
Direction of scaling
Raw domain
score
Raw item score
....(2-10)
+
+
....(1-5)
....(1-5)
....(7-35)
-(reverse)
....(1-5)
-(reverse)
....(1-5)
+
+
+
+
....(1-5)
....(1-5)
....(1-5)
....(1-5)
+
....(1-5)
....(6-30)
+
+
+
+
+
- (reverse)
....(1-5)
....(1-5)
....(1-5)
....(1-5)
....(1-5)
....(1-5)
....(3-15)
+
+
+
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35
....(1-5)
....(1-5)
....(1-5)
Domains and questions
236/BREF
Domain 4
Environment
F20.1.2/B8
F27.1.2/B9
F23.1.1/B12
F25.1.1/B13
How safe do you feel in your daily life?
How healthy is your physical environment?
Have you enough money to meet your needs?
How available to you is the information that you need in your
daily-to-day life?
To what extent do you have the opportunity for leisure activities?
How satisfied are you with the condition of your living place?
How satisfied are you with your access to health services?
How satisfied are you with your transport?
F26.1.2/B14
F21.2.2/B23
F24.2.1/B24
F28.2.2/B25
Direction of scaling
Raw domain
score
Raw item score
....(8-40)
+
+
+
+
....(1-5)
....(1-5)
....(1-5)
....(1-5)
+
+
+
+
....(1-5)
....(1-5)
....(1-5)
....(1-5)
If no more than one item from the Physical Health or Environment domains has been
coded as missing, we recommend that a domain score be calculated by substituting a personspecific average across the completed items in the same scale. For example, if a respondent does
not have a value for item B16 How satisfied are you with your sleep? in the Physical Health
domain, but has answered all of the other items in that domain, then the value for item B16
would be the average of the remaining 6 items. If two or more items are coded missing in these
two domains, the domain score should not be calculated, likewise if any items are coded missing
in the Psychological and Social Relationships domains, a domain score for that respondent
would not be calculated.
After item recoding and handling of missing data, a raw score is computed by a simple
algebraic sum of each item in each of the four domains. Once complete, check the frequencies of
each domain to be sure that the scores are within the correct range indicated in Table 9 Raw
domain score column. The next step is to transform each raw scale score using the formula on
page 32. The possible raw score ranges for each domain are as follows: Physical Health=28,
Psychological=24, Social Relationships=12, and Environment=32.
SCORING EXERCISE AND TEST DATASET FOR THE WHOQOL-BREF INSTRUMENT
The purpose of this scoring exercise is to help WHOQOL-Bref users to evaluate results
from each step in the process of calculating the Domain summary scores of the instrument. This
exercise was created for SPSS users, but with minor modifications, can be adapted for other
computer programs or can be useful for those scoring the survey manually.
A test dataset and SPSS code for scoring the WHOQOL-Bref a computer disk in this
packet. The test dataset, which is called “WQ_BREF.TXT” on the disk, contains data from 64
administrations of the WHOQOL-BREF. The data can be seen in Appendix F. The enclosed
diskette also provides the user with the SPSS syntax used to:
•
•
import raw data into SPSS format [WQ_B_DL.SPS]
derive the WHOQOL-BREF domain summaries [WQ_BREF.SPS]
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The SPSS code (called “WQ_BREF.SPS”) on the disk begins by labeling all items and
checking for out-or-range values. It then recodes the 3 negatively stated items so that a higher
score indicates better health. The 4 domains are then scored, labeled, and transformed to a 0 to
100 scale used to interpret and compare to other validated instrument tools such as the
WHOQOL-100. A copy of the SPSS syntax is reproduced in Appendix F.
Table 10 presents statistics for the transformed domains for the WHOQOL-Bref. After
scoring the test dataset, the means, standard deviations, and minimum and maximum observed
values should agree with those presented in Table 10
TABLE 10. Test Dataset Descriptive Statistics: WHOQOL-BREF
Descriptive Statistics
N
Minimum
Maximum
Mean
Std.
Deviation
Physical
(T RANSFORMED)
64
32.14
92.86
66.7969
14.5480
Psychological
(T RANSFORMED)
64
37.50
95.83
73.5026
13.7165
Social Relations
(T RANSFORMED)
64
25.00
100.00
73.1771
17.0891
Environment
(T RANSFORMED)
64
28.13
100.00
72.8027
14.1592
Valid N (listwise)
64
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Camouflaging Autistic Traits Questionnaire (CAT-Q)
Please read each statement below and choose the answer that best fits your experiences
during social interactions.
Strongly
Disagree
(1)
Disagree
(2)
Somewhat
Disagree
(3)
Neither
Agree nor
Disagree
(4)
Somewhat
Agree
(5)
Agree
(6)
Strongly
Agree
(7)
1. When I am interacting with someone, I deliberately copy their body language or facial
expressions
2. I monitor my body language or facial expressions so that I appear relaxed
3. I rarely feel the need to put on an act in order to get through a social situation*
4. I have developed a script to follow in social situations (for example, a list of questions
or topics of conversation)
5. I will repeat phrases that I have heard others say in the exact same way that I first
heard them
6. I adjust my body language or facial expressions so that I appear interested by the
person I am interacting with
7. In social situations, I feel like I’m ‘performing’ rather than being myself
8. In my own social interactions, I use behaviours that I have learned from watching
other people interacting
9. I always think about the impression I make on other people
10. I need the support of other people in order to socialise
11. I practice my facial expressions and body language to make sure they look natural
12. I don’t feel the need to make eye contact with other people if I don’t want to*
13. I have to force myself to interact with people when I am in social situations
14. I have tried to improve my understanding of social skills by watching other people
15. I monitor my body language or facial expressions so that I appear interested by the
person I am interacting with
16. When in social situations, I try to find ways to avoid interacting with others
17. I have researched the rules of social interactions (for example, by studying
psychology or reading books on human behaviour) to improve my own social skills
18. I am always aware of the impression I make on other people
19. I feel free to be myself when I am with other people*
20. I learn how people use their bodies and faces to interact by watching television or
films, or by reading fiction
21. I adjust my body language or facial expressions so that I appear relaxed
22. When talking to other people, I feel like the conversation flows naturally*
23. I have spent time learning social skills from television shows and films, and try to use
these in my interactions
24. In social interactions, I do not pay attention to what my face or body are doing*
25. In social situations, I feel like I am pretending to be ‘normal’
Scoring:
All items are scored 1-7, with higher scores reflecting greater camouflaging. Items with an
asterisk (*) should be reverse scored.
Factors:
Compensation = 1, 4, 5, 8, 11, 14, 17, 20, 23
Masking = 2, 6, 9, 12, 15, 18, 21, 24
Assimilation = 3, 7, 10, 13, 16, 19, 22, 25
| File Type | application/pdf |
| Author | Powell, Patrick (CDC/DDNID/NCBDDD/DHDD) |
| File Modified | 2022-09-01 |
| File Created | 2022-09-01 |