CH STRONG survey - screenshots

Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being

Att. 14 - Online Survey

Survey questionnaire

OMB: 0920-1122

⚠️ Notice: This form may be outdated. More recent filings and information on OMB 0920-1122 can be found here:

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)

Form Approved
OMB No. : 0920-XXXX
Exp.: XX/XX/20XX

Thank you for taking part in CHSTRONG,a survey to examine the healthcare needs of people born with heart conditions. This project is being conducted by
the <>, the March of Dimes,and the Centers for Disease Control and Prevention (CDC)
Across the country,hundreds of people born with a heart condition are taking part in this survey Everyone's answers are important to us and will add to our
understanding of how heart conditions affect adults. The findings from the survey will help identify unmet needs of adults who were born with heart conditions.
Add itionally,this info rmation may help families of children born with heart conditions plan fo r the future. To learn more about this project,you can visit
<>.
The survey will take about 20 minutes. Your participation in this the survey is up to you If you choose to participate, it would be helpful if you completed all of
the questions However,you can decide not to answer any question and you can stop at any time. Nothing will happen if you decide not to complete the
survey Your answers are confidential and your name will never be released.
If you have any questions,please contact
Dr. Sherry Farr
National Center on Birth Defects and Developmental Disab ilities,CDC
<<800.xxx.xxxx>>

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Public reporting burden of this collection information is estimated to average 20 minutes, including 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).

Basic Information
Questions 1 - 3 ask basic information about you to make sure we have the right person
1. Are you the person to whom the introduction letter was addressed?

0 Y.
0 No

)

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888)232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Basic Information
2. If no,what is your relationship to the person to whom the letter was addressed?

o P.:ct: :ri$.P.9. : :i
0 Sibling
O Parent
O Other family member
0 Unrelated care give r

O Other,please spec ify
3. What is the primary reason that this person cannot complete the questionnaire?

O Physically unable
O Mentally unable
0 Deceased
0 Unavailable

O Other,please spec ify

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232-1:636) TTY: (888) 232-631:8, New Hours of Operation 8am-8pm ET/Monday-Friday
Closed Holidays - [email protected]
Last updated: 01/23/2012

Basic Information
As explained in the letter you received,we are contacting you about this survey because our records show that you have a congenital heart problem,which is
a heart problem you were born with. We would like to ask you some questions about your heart problem.
If you are completing this questionnaire for the addressee ,please answer all questions with info rmation about the addressee only
4. What is the name of the heart problem that you were born with? (Check all that apply )

o A9:ctif :Y.

j 9 1l

O Atrial septal defect (ASD)
O Atrioventricular septal defect (AVSD) or Atrioventricular canal (AV canal)
0 Bicuspid aortic valve
O Coarctation of aorta
O Hypoplastic left heart syndrome (HLHS)
O Pulmonary atresia
0 Pulmonary valve stenosis
O Tetralogy of Fallot (TOF)
O Transpos ition of the great arteries (TGA)
O Tricuspid atresia
O Ventricular septal defect (VSD)
O Truncus arteriosus
O Single ventricle (double inlet left ventricle)

O Patent ductus arteriosus (PDA)

0 Other - please provide name
O Don't know/ not sure
O No heart problem that I know of (Please answe r remaining questions to the best of your ability.)

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Surgeries
Next,we will ask you questions about any surgeries you may have had on your heart Heart surgery will result in scars on the middle of your chest,side,or
back. Surgeries that occur after the first surgery may use the same scar or create a new scar.
5. Have you ever had surgery for the heart problem you were born with?

0 Yes
0 No
0 Not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Surgeries
6. Approx imately how many heart surgeries have you had during each of the following age periods? (Provide number or check box fo r "Don't know" )
Number of surgeries (0 if no surgery) Had surgery but don't know how many Don't know/ not sure
When you were less than 1 year old?
When you were 1-5 years old?

When you were 6-17 years old?

When you were 18 years or older?

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health I nsurance
The next few questions are about health insurance. When you answer these questions,please think about health insurance obtained through employment or
purchased directly,as well as gove rnment programs like Medicare and Medicaid that provide medical care or help pay medical bills.
7. Are you covered by health insurance or some other kind of health care plan?

0 Y.
0 No

)

0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health I nsurance
8. What kind of health insurance or health care coverage do you have? Include those that pay fo r only one type of service (nursing home care,acc idents,
or dental care) Exclude private plans that only provide extra cash while hospitalized If you have more than one kind of health insurance,please select all that
apply.

0 P.frV.t:h ff Jrj r.
)
0 Medicare
O Medi-gap
O Medicaid (state-spec ific names)
O SCHIP (CHIP/children's health insurance program)
O Military health care (TricareNNCHAMP-VA)
O Indian Health Service
O State-sponsored health plan
0 Other gove rnment program
O Single service plan (e g ,dental,vision,presc riptions)
0 No cove rage of any type

0 Other - please provide name
O Don't know/ not sure
9. In the past 12 months,was there any time when you did not have any health insurance coverage?

O Yes
0 No
0 Don't know/ not sure

O Clear radio button
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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Insurance
10. In regard to your health insurance or health care coverage,how does it compare to a year ago?

r.!

O Wo rse
O About the same
0 Don't know/ not sure
11. Have you ever been denied health insurance?
0 Yes
0 No
0 Don't know/ not sure
12. Have you ever received disability benefits (do not include Medicaid)?
O Yes
0 No
0 Don't know/ not sure
13. Have you ever been denied disab ility benefits (do not include Medicaid)?
0 Yes
0 No
0 Don't know/ not sure
14. Have you ever been unable to pay or delayed payment for medical care, including medications,hospital stays,and doctors' visits?
O Yes
0 No
0 Don't know/ not sure
15. Was there a time in the past 12 months when you needed to see a doctor but could not because of cost?
0 Yes
0 No
0 Don't know/ not sure

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Ca re
The next set of questions ask about your use of health care.
16. What kind of place do you go most often when you are sick or need advice about your health -- a clinic,doctor's office,emergency room,or some
other place? (Please choose the place you go most often )

o t.H i:i?r.::h : :ff : : :

r.l

O Doctor's office or HMO
O Hospital emergency room
O Hospital outpatient depa rtment
O Some other place
O Don't go to one place most often
0 Don't know/ not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Care

17. Have you info rmed the place where you go most often when you are sick or need advice about your health that you were born with a heart problem?

0 Y. )
0 No
0 Don't know/ not sure
18. At any time in the past 12 months did you CHANGE the place(s) to which you USUALLY go for health care?

0 Yes
0 No
0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Ca re
19. Was this change for a reason related to health insurance?

0 Y.
0 No

)

0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Care

20. During the past 12 months,how many times have you gone to a hospital emergency room about your own health (this includes emergency room visits
that resulted in hospital admission)?

0 f.iqtj:
01
0 2-3
0 4-5
0 6-7
0 8-9
0 10-12
0 13-15
O 16 or more
0 Don't know/ not sure
21. During the past 12 months,how many sepa rate times have you stayed overnight in the hospital fo r at least one night for any reason? (Only include
times when you were admitted to the hospitalDo not include times where you were in the eme rgency room overnight)
0 None

01
0 2-3
0 4-5
0 6-7
0 8-9
0 10-12
0 13-15
O 16 or more
0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Care
22. Of these times that you stayed overnight in the hospital for at least one night in the past 12 months,how many were because of your heart problem or
complications from your heart problem?

0 f.iqtj :
01
0 2-3
0 4-5
0 6-7
0 8-9
0 10-12
0 13-15
O 16 or more
0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Health Ca re
23. In the past 12 months,approximately how many times have you visited the office of any health care provider,such as a doctor,nurse,or physician's
assistant,for any reason pertaining to your health? Do not include dentists.

0 f.iqtj :
01
0 2-3
0 4-5
0 6-7
0 8-9
0 10-12
0 13-15
O 16 or more
0 Don't know/ not sure

O Clear radio button
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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Heart Doctors
The next few questions ask about visits to a heart doctor (cardiologist) or cardiologist clinic.
24. How many of these visits were with a heart doctor or at a cardiology clinic (clinic that only sees patients with heart problems) in the past 12
months?
Please enter a number (enter "O" if none with a heart doctor or at a cardiology clinic in the last 12 months)
0 Don't know/ not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Heart Doctors

25. When is the last time you saw a heart doctor?

o !; :S. Jh ff IY. :r:
0 1-2 years
0 3-5 years
O More than 5 years
0 Never seen one
0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Heart Doctors
26. Who are the majority of patients that your primary heart doctor usually sees?

o t¢.fili r. : : : : 9i

t :<:P.: : 1fri: :r i(Jic 91 ))

O Adults who have had their heart problem since birth (adult congen ital heart cardiologist)
O Adults (adult cardiologist)
0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Heart Doctors
27. If you have not seen a heart doctor in the last 5 years or ever,why? Please check all that apply.

o f. :Wlil
O Did not think I needed to see a heart doctor
O Doctor told me I no longer needed to see a heart doctor
O My parents stopped taking me
O Changed or lost my insurance
0 Moved to a diffe rent city or town
O Did not like my heart doctor
O Couldn't find a heart doctor
O Other
O Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Heart Doctors
28. When you were a teenager or young adult,did a health care provider ever discuss with you the need to see a heart doctor throughout your life?

0 Y.
0 No

)

0 Don't know/ not sure

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Gene ral Health
The next few questions ask about your physical and mental health and your interactions with others.
Please mark the box that corresponds to your answer.
Excellent

Ve ry Good

Good

Fair

Poor

0
0

0
0
0

29. In general, would you say your health is
30. In general,would you say your quality of life is
31. In general, how would you rate your physical health?
32. In general,how would you rate your mental health, including your mood and
your ability to think?
33. In general, how would you rate your satisfaction with your soc ial activit ies
and relationships?
34. In general,please rate how well you carry out your usual soc ial activities and
roles (this includes activities at home,at work and in your community,and
responsibilities as a parent,child,spouse,employee,friend,etc)?

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Gene ral Health
35. To what extent are you able to carry out your everyday physical activities such as walking,climbing stairs,carrying groceries,or moving a chair?

0 t.:iifriP.i tiY.:
0 Mostly
O Moderately
0 A little
O Not at all
36. In the past 7 days ,how often have you been bothered by emotional problems such as feeling anxious ,depressed or irritable?
0 Never
O Rarely
O Sometimes
0 Often
0 Always
37. In the past 7 days,how would you rate your fatigue on average?
0 None
0 Mild
0 Moderate
0 Severe
0 Very seve re

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232-1:636) TTY: (888) 232-631:8, New Hours of Operation 8am-8pm ET/Monday-Friday
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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Gene ral Health
38. In the past 7 days,how would you rate your pain on average?
No pain

0
Q

Worst pain imaginable

10
0

39. Over the last 2 weeks ,how often have you been bothered by any of the following problems?
Not at all
Little interest or pleasure in doing things
Feeling down,depressed,or hopeless

0
0

Several days More than half the days Nearly every day

0
0

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Gene ral Health
With the next set of questions,we want to learn whether you have phys ical,mental,or emotional conditions that cause serious difficulties with your daily
activities.

40. Are you deaf or do you have serious difficulty hearing?

0 Y.

)

0 No
41. Are you blind or do you have serious difficulty seeing,even when wearing glasses?

O Yes
0 No
42 . Because of a phys ical,mental,or emotional condition,do you have serious difficulty concentrating, remembe ring,or making dec isions?

0 Yes
0 No
43 . Do you have serious difficulty walking or climbing stairs?

O Yes
0 No
44. Do you have difficulty dressing or bathing?

0 Yes
0 No
45. . Because of a phys ical,mental,or emotional condition,do you have difficulty doing errands alone such as visiting a doctor's office or shopp ing?

O Yes
0 No

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
General Health
Please rate how concerned you are about the following
Not at all concerned Not very concerned Somewhat concerned Very concerned
46 . Your future health
47 . Your ability to have children
48. Your overall heart health

;

0
0

;

0
0
0

49 . Have you completed an advance health care directive ,liv ing will,or heath care power of attorney?

O Yes
0 No
0 Don't know/ not sure

O Clear radio button
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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Height And Weight
Questions 50-52 ask about your height and weight
50. How tall are you without shoes? Please answer in either feet or meters,not both.
Height in feet and inches (please give number)jft

Height in meters or centimeters (please give number)jm
Don't know/ not sure

cm.

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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Height And Weight
51. How much do you weigh without clothes or shoes? If you are currently pregnant,how much did you weigh before your pregnancy? Please answer in
either pounds or kilograms,not both.
We ight in pounds (please give number)rpounds
We ight in kilograms (please give number)jkilograms
Don't know/ not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Height And Weight
52. What is the most you have ever weighed in your life? (Do not include any times when you were pregnant) Please answe r in either pounds or
kilograms,not both.
We ight in pounds (please give number)jpounds
We ight in kilograms (please give number)jkilograms
Don't know/ not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Reproductive Health
Now we will ask you questions about your reproductive health in relation to your heart problem and any pregnancies you have had or are planning
53. Has a doctor,nurse,or other health care worker ever talked with you about spec ial concerns about becoming pregnant because of your heart problem?

0 Y.

)

0 No
0 Don't know/ not sure
54. Has a doctor,nurse,or other health care worker ever advised you to avoid pregnancy because of your heart problem?

0 Yes
0 No
0 Don't know/ not sure
55. Has a doctor,nurse or other health professional ever talked with you about the safest type of birth control or contraception to use because of your heart
problem?

0 Yes
0 No
0 Don't know/ not sure
56. Have you ever delayed or avoided getting pregnant because of concerns about your health in relation to your heart problem?

O Yes
0 No
0 Don't know/ not sure
57. Have you ever been pregnant?

0 Yes
0 No
0 Don't know/ not sure

O Clear radio button

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Reproductive Health
58. How many times have you been pregnant?
Please enter a number (enter "O" if never pregnant)

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Reproductive Health
59. How many times have you given birth?
Please enter a number (enter "O" if never given birth)

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Record Confirmation
Now we would like to confirm the info rmation we have in our records and understand how people who completed the survey diffe r from other people born with
a heart problem. Similar to all questions in this survey,any info rmation you give will be confidential. You may skip any questions you do not wish to answer. If
you are not the person to whom the letter was addressed,please answer with info rmation about the addressee only (that is,the person to whom the
introduction letter was addressed)
60. Do you consider yourself to be Hispanic or Latino?

0 Yes
0 No
0 Don't know/ not sure
61. What race or races do you consider yourself to be? Please select one or more.

0 Ame rican Indian or Alaska Native
0 As ian
O Black or African Ame rican
O Native Hawaiian or Pacific Islander
0 White
O Don't know/ not sure
62. How many times have you been married (or lived as married)?
(enter "O" if never been married or lived as married)

O Clear radio button
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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Education And Work History
Questions 63 through 68 ask about your education and work history
63. What is the highest degree or grade you have completed?

o N Y. :r.:

:S. tj99UJ.r. :ii:iY:

: iii: :r.g: :ct )

O Less than 9th grade
O 9th to 12th grade,no diploma
0 High school graduate,GED,or alternative
O Some college,no degree
O Assoc iate degree
O Bachelor's degree
O Graduate or profess ional degree
0 Don't know/ not sure
64. In elementary,j unior,or high school were you ever in a spec ial education program? Please select all that apply.
O Spec ial education
0 Advanced placement
O Homebound education
O Not in any of these programs
O Don't know/ not sure

O Clear radio button
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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Education And Work History
65. If you were in a special education program,what grades were you in at the time? Please select all that apply.
O Kindergarten-3rd grade
O 4th-6th grade
O 7th-12th grade
O Don't know/ not sure

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Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232--t636) TTY: (888) 232-63-t8, New Hours of Operation 8am-8pm ET/Monday-Friday
Oosed Holidays - [email protected]
Last updated: 01/23/2012

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Education And Work History
66. During the last 12 months,did you work for pay at any time at a job or business? Please select all that apply.

0 Y. :f i jiiii: J
O Yes - Part time
0 No
O Don't know/ not sure
67. Has your health kept you from serving in military service or from doing the type of work that you want?

0 Yes
0 No
O Still in school
0 Don't know/not sure
68. During the last 12 months,approximately how many days of school or work did you miss because of illness?
(enter "O" if did not miss school or work because of illness in the last 12 months)
I do not attend school nor do I work for pay

69. For future planning,what type of info rmation or help do you think should be available to people born with heart problems?

O Clear radio button
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Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
Contact Information
Finally,we would like your contact info rmation to confirm our records. If you are not the person to whom the letter was addressed,please answer with
info rmation about the addressee only (that is,the person to whom the introduction letter was addressed)
70. What name were you given at birth?
A

71. If your name has changed since birth,what is your current name?
A

72. What is your date of birth? (mm/dd/yyyy)

We want to thank you again for participating in this survey As the survey progresses ,we would like to provide you updates about what we learn. Also,the
CDC may conduct similar surveys in the future,and would like to offer you an opportunity to participate Please remembe r that, if you provide your contact
info rmation now,you may change your mind and decline participation in the future.
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File Type	application/pdf
File Title	PowerPoint Presentation
Author	Soltay, Endre (CDC/ONDIEH/NCBDDD) (CTR)
File Modified	2016-02-03
File Created	2016-02-03