Form 0920-1122 CHSTRONG Cogenital Heart Survey To Recognize Outcomes, N

Form Approved
OMB Number 0920-XXXX
Exp. Date: XX/XX/20XX

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG

[ID STICKER HERE]

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
Any information you give will be confidential. You may skip any questions you do not want to answer.
1.

Are you the person to whom the introduction letter was addressed?
Yes
Go to #4
No
2.

What is your relationship to the person to whom the letter was addressed?
Partner/Spouse
Sibling
Parent
Other family member
Unrelated care giver
Other (please specify):

3. What is the primary reason that this person cannot complete the questionnaire?
Deceased
Go to #75 on page 13
Physically unable
Mentally unable
Unavailable
Other (please specify):
4.

As explained in the letter you received with this survey, we are contacting you about this survey
because our records show that you have a congenital heart defect, 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 (the individual with the heart
problem), please answer all questions with information about the addressee only.
What is the name of the heart problem that you were born with? Mark all that apply.
Aortic valve stenosis
Tetralogy of Fallot (TOF)
Atrial septal defect (ASD)
Transposition of the great arteries (TGA)
Atrioventricular septal defect (AVSD) or
Tricuspid atresia
Atrioventricular canal (AV canal)
Bicuspid aortic valve
Truncus arteriosus
Coarctation of aorta
Ventricular septal defect (VSD)
Hypoplastic left heart syndrome (HLHS)
Other (please provide name):
Patent ductus arteriosus (PDA)
Don’t know/not sure
No heart problem that I know of (please answer
remaining questions to the best of your ability)

Pulmonary atresia
Pulmonary valve stenosis
Single ventricle (double inlet left ventricle)

1

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?
Yes
No
Go to #10
Don’t know/not sure
Go to #10
Approximately how many heart surgeries have you had during each of the following age
periods? Provide number or mark appropriate box.
# of Heart Surgeries
(enter “0” if no heart
surgery)
6.

When you were less than 1 year old?

7.

When you were 1-5 years old?

8.

When you were 6-17 years old?

9.

When you were 18 years or older?

Had heart
surgery but don’t
know how many

Don’t know/
not sure

HEALTH INSURANCE
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 government
programs like Medicare and Medicaid that provide medical care or help pay medical bills.
10. Are you covered by health insurance or some other kind of health care plan?
Yes
No
Go to #13 on page 3
Don’t know/not sure
Go to #13 on page 3

2

11. What kind of health insurance or health care coverage do you have? Include those that pay
for only one type of service (nursing home care, accidents, or dental care). Exclude private
plans that only provide extra cash while hospitalized. If you have more than one kind of
health insurance, mark all that apply.
Private health insurance
State-sponsored health plan
Medicare
Other government program
Medi-gap
Single service plan (e.g., dental, vision,
prescriptions)
Medicaid (state-specific names)
Other (please provide name):
SCHIP (CHIP/children's health
insurance program)
Military health care
Don’t know/not sure
(Tricare/VA/CHAMP-VA)
Indian Health Service
12. In the past 12 months, was there any time when you did not have any health insurance
coverage?
Yes
No
Don’t know/not sure
13. In regard to your health insurance or health care coverage, how does it compare to a year ago?
Better
Worse
About the same
Don’t know/not sure
14. Have you ever been denied health insurance?
Yes
No
Don’t know/not sure
15. Have you ever received disability benefits (do not include Medicaid)?
Yes
No
Don’t know/not sure
16. Have you ever been denied disability benefits (do not include Medicaid)?
Yes
No
Don’t know/not sure
17. Have you ever been unable to pay or delayed payment for medical care, including medications,
hospital stays, and doctors' visits?
Yes
No
Don’t know/not sure
3

18. Was there a time in the past 12 months when you needed to see a doctor but could not because
of cost?
Yes
No
Don’t know/not sure

HEALTH CARE
The next set of questions ask about your use of health care.
19. 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.)
Clinic or health center
Doctor's office or HMO
Hospital emergency room
Hospital outpatient department
Some other place
Don't go to one place most often
Go to #23 on page 5
Don’t know/not sure
Go to #20
20. Have you informed the place you go most often when you are sick or need advice about your
health that you were born with a heart problem?
Yes
No
21. At any time in the past 12 months did you change the place where you usually go for health
care?
Yes
No
Go to #23 on page 5
Don’t know/not sure
Go to #23 on page 5
22. Was this change for a reason related to health insurance?
Yes
No
Don’t know/not sure

4

23. 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)?
None
1
2-3
4-5
6-7
8-9
10-12
13-15
16 or more
Don’t know/not sure
24. During the past 12 months, how many separate times have you stayed overnight in the hospital
for at least one night for any reason? (Only include times when you were admitted to the
hospital. Do not include times where you were in the emergency room overnight.)
None
Go to #26 on page 6
1
2-3
4-5
6-7
8-9
10-12
13-15
16 or more
Don’t know/not sure
25. 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?
None
1
2-3
4-5
6-7
8-9
10-12
13-15
16 or more

5

26. 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.
None
Go to #28
1
2-3
4-5
6-7
8-9
10-12
13-15
16 or more

HEART DOCTORS
The next few questions ask about visits to a heart doctor (cardiologist) or cardiology clinic.
27. How many health care provider visits were with a heart doctor or at a cardiology clinic (clinic
that only see patients with heart problems) in the past 12 months?
Please enter a number (enter “0” if none with a heart doctor or at a cardiology clinic)
28. When is the last time you saw a heart doctor?
Less than 1 year
1-2 years
3-5 years
More than 5 years
Go to #30
Never seen one
Go to #30
29. Who are the majority of patients that your
primary heart doctor usually sees?
Children and adolescents (pediatric
cardiologist)
Adults who have had their heart problem
since birth (adult congenital heart
cardiologist)
Adults (adult cardiologist)

30. If you have not seen a heart doctor in the
last 5 years or ever, why? Mark all that
apply.
Felt well
Did not think I needed to see a heart doctor
Doctor told me I no longer needed to see a
heart doctor
My parents stopped taking me
Changed or lost my insurance
Moved to a different city or town
Did not like my heart doctor
Couldn't find a heart doctor
Other

Go to #31 on page 7

6

31. 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?
Yes
No

GENERAL HEALTH
The next few questions ask about your physical and mental health and your interactions with others.
32. Have you ever been told by a doctor or other health professional that you had any of the
following conditions? (Mark all that apply):
Diabetes or sugar diabetes

A stroke

Obstructive sleep apnea

Asthma

Cancer or a malignancy of any kind

An ulcer (stomach, duodenal or peptic ulcer)

Congestive heart failure

Arthritis, gout, lupus, or fibromyalgia

Cardiac dysrhythmias or irregular heart beat

Hypertension, also called high blood pressure

A mood disorder or depression
A heart attack (also called myocardial
infarction)

Other (please specify):

None of the above
Mark the box that corresponds to your answer for questions 33 – 38.
Excellent
33. In general, would you say your health is:
34. In general, would you say your quality of
life is:
35. In general, how would you rate your
physical health?
36. In general, how would you rate your
mental health, including your mood and
your ability to think?
37. In general, how would you rate your
satisfaction with your social activities
and relationships?
38. In general, please rate how well you carry
out your usual social activities and roles
(this includes activities at home, at work
and in your community, and
responsibilities as a parent, child,
spouse, employee, friend, etc.)?

7

Very
Good

Good

Fair

Poor

39. To what extent are you able to carry out your everyday physical activities such as walking,
climbing stairs, carrying groceries, or moving a chair?
Completely
Mostly
Moderately
A little
Not at all
40. In the past 7 days, how often have you been bothered by emotional problems such as feeling
anxious, depressed or irritable?
Never
Rarely
Sometimes
Often
Always
41. In the past 7 days, how would you rate your fatigue on average?
None
Mild
Moderate
Severe
Very severe
42. In the past 7 days, how would you rate your pain on average? Mark the box that corresponds to
your answer.
Worst pain
No pain
imaginable
0
1
2
3
4
5
6
7
8
9
10

Over the last 2 weeks, how often have you been bothered by any of the following problems? Mark
the box that corresponds to your answer.
Not at all

Several days

More than
half the days

Nearly every
day

43. Little interest or pleasure in doing things
44. Feeling down, depressed, or hopeless
With the next set of questions, we want to learn whether you have physical, mental, or emotional
conditions that cause serious difficulties with your daily activities.
45. Are you deaf or do you have serious difficulty hearing?
Yes
No
46. Are you blind or do you have serious difficulty seeing, even when wearing glasses?
Yes
No
8

47. Because of a physical, mental, or emotional condition, do you have serious difficulty
concentrating, remembering, or making decisions?
Yes
No
48. Do you have serious difficulty walking or climbing stairs?
Yes
No
49. Do you have difficulty dressing or bathing?
Yes
No
50. Because of a physical, mental, or emotional condition, do you have difficulty doing errands
alone such as visiting a doctor’s office or shopping?
Yes
No
Please rate how concerned you are about the following.
Not at all
Not very
concerned
concerned
51. Your future health
52. Your ability to have children
53. Your overall heart health

Somewhat
concerned

Very
concerned

54. Have you completed an advance health care directive, living will, or heath care power of
attorney?
Yes
No
Don’t know/not sure

HEIGHT AND WEIGHT
Questions 55 – 57 ask about your height and weight.
55. How tall are you without shoes?
Height in feet and inches (please give number)

ft.

in.

56. How much do you weigh without clothes or shoes? If you are currently pregnant, how much did
you weigh before your pregnancy?
pounds

Weight in pounds (please give number)

9

57. What is the most you have ever weighed in your life? (Do not include any times when you were
pregnant.)
pounds

Weight in pounds (please give number)

REPRODUCTIVE HEALTH
This section is for women only. If you are a man, go to #65 on page 11.
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.
58. Has a doctor, nurse, or other health care worker ever talked with you about special concerns
about becoming pregnant because of your heart problem?
Yes
No
59. Has a doctor, nurse, or other health care worker ever advised you to avoid pregnancy because
of your heart problem?
Yes
No
60. 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?
Yes
No
61. Have you ever delayed or avoided getting pregnant because of concerns about your health in
relation to your heart problem?
Yes
No
62. Have you ever been pregnant?
Yes
No
Go to #65 on page 11
Don’t know/not sure
Go to #65 on page 11
63. How many times have you been pregnant?
Please enter a number
64. How many times have you given birth?
Please enter a number (enter “0” if never given birth)

10

RECORD CONFIRMATION
Now we would like to confirm the information we have in our records and understand how people who
completed the survey differ from other people born with a heart problem. Similar to all questions in this
survey, any information you give will be confidential. You may skip any questions you do not want to
answer. If you are not the person to whom the letter was addressed, please answer with information
about the addressee only (that is, the person to whom the introduction letter was addressed).

65. Do you consider yourself to be Hispanic or Latino?
Yes
No
66. What race or races do you consider yourself to be? One or more categories may be selected.
American Indian or Alaskan Native
Asian
Black or African American
Native Hawaiian or Pacific Islander
White
67. How many times have you been married (or lived as married)?
Please enter a number (enter “0” if never been married or lived as married)

EDUCATION AND WORK HISTORY
Questions 68 – 73 ask about your education and work history.
68. What is the highest degree or grade you have completed?
Never attended school or only attended kindergarten
Less than 9th grade
9th to 12th grade, no diploma
High school graduate, GED, or alternative
Some college, no degree
Associate degree
Bachelor’s degree
Graduate or professional degree
Don’t know/not sure

11

69. In elementary, junior, or high school were you ever in a special education program? Mark all that
apply.
Special education
Advanced placement
Homebound education
Not in any of these programs
Go to #71
Don’t know/not sure
Go to #71
70. If you were in a special education program, what grades were you in at the time? Mark all
that apply.
Kindergarten-3rd grade
4th-6th grade
7th-12th grade
Don’t know/not sure
71. During the last 12 months, did you work for pay at any time at a job or business? Mark all that
apply.
Yes – Full time
Yes – Part time
No
72. Has your health kept you from serving in military service or from doing the type of work that you
want?
Yes
No
Still in school
73. During the last 12 months, approximately how many days of school or work did you miss
because of illness?
Please enter a number
(enter “0” if did not miss school or work because of illness in last 12 months)
I do not attend school nor do I work for pay.
74. For future planning, what type of information or help do you think should be available to people
born with heart problems?

12

Please continue to the next page.

13

CONTACT INFORMATION
Finally, we would like some information from you to confirm our records. If you are not the person to whom the
letter was addressed, please answer with information about the addressee only (that is, the person to whom
the introduction letter was addressed).
75. What name were you given at birth? Please enter both first and last name.
(Please print)
76. If your name has changed since birth, what is your current name? Please enter both first and last name.
(Please print)
77. 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 remember that, if you provide your contact information
now, you may change your mind and decline participation in the future.
78. If you would like to receive periodic updates on the progress and results of this survey, please provide
your email address.
Email address
(please print)
79. May we contact you in the future to participate in similar surveys?
Yes
No
Go to the end
80. Please provide your current mailing address and/or email address, depending on how you would like
to be contacted. (please print)

Street address

City

State

Zip

Email address

81. It would be helpful if you could provide us with the name and address of someone who could give us your
new address in case you decide to move in the future. We would contact this person for your new address
only if we are unable to reach you at your home address and/or email address. (please print)

Street address

City

State

Email address

14

Zip

Thank you for your time. It is truly appreciated.

[ID STICKER HERE]

Please return this questionnaire in the provided postage-paid envelope.
If you have lost your envelope, please return to:
Centers for Disease Control and Prevention
4770 Buford Hwy
Mailstop E-86 (Attn: Sherry Farr)
Atlanta, GA 30341
If you have any questions or comments, please visit our website:
www.chstrong.org
or contact:
The CH STRONG Project Manager at
info@chstrong.org or (800) 586-5505

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 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 (0920-1122).