CH STRONG survey

Attachment 3 – Survey

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

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
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?
a. Yes (Skip to Question 4)
b. No
2. If no, what is your relationship to the person to whom the letter was addressed?
a. Partner/Spouse
b. Sibling
c. Parent
d. Other family member
e. Unrelated care giver
f. Other, please specify:
(please print)
3. What is the primary reason that this person cannot complete the questionnaire?
a. Physically unable
b. Mentally unable
c. Deceased (Skip to Q 70)
d. Unavailable
e. Other, please specify:
(please print)
As explained in the letter you received, 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, please answer all questions with information about
the addressee only.
4. What is the name of the heart problem that you were born with? (Check all that apply.)
a. Aortic valve stenosis
b. Atrial septal defect (ASD)
c. Atrioventricular septal defect (AVSD) or Atrioventricular canal (AV canal)
d. Bicuspid aortic valve
e. Coarctation of aorta
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).

f.
g.
h.
i.
j.
k.
l.
m.
n.
o.
p.

Hypoplastic left heart syndrome (HLHS)
Pulmonary atresia
Pulmonary valve stenosis
Tetralogy of Fallot (TOF)
Transposition of the great arteries (TGA)
Tricuspid atresia
Ventricular septal defect (VSD)
Truncus arteriosus
Single ventricle (double inlet left ventricle)
Patent ductus arteriosus (PDA)
Other – please provide name (please print)

q. Don’t know/not sure
r. No heart problem that I know of (Please answer remaining questions to the best of your ability.)
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?
a. Yes
b. No (Skip to Question 7)
c. Not sure (Skip to Question 7)
6. Approximately how many heart surgeries have you had during each of the following age periods?
(Provide number or check appropriate box.)
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?
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.
7. Are you covered by health insurance or some other kind of health care plan?
a. Yes
b. No (Skip to Question 10)

c. Don’t know/not sure (Skip to Question 10)
8. 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, please select all that
apply.
a. Private health insurance
b. Medicare
c. Medi-gap
d. Medicaid (state-specific names)
e. SCHIP (CHIP/children's health insurance program)
f. Military health care (Tricare/VA/CHAMP-VA)
g. Indian Health Service
h. State-sponsored health plan
i. Other government program
j. Single service plan (e.g., dental, vision, prescriptions)
k. No coverage of any type
l. Other, please specify
(please print)
m. Don’t know/not sure
9. In the past 12 months, was there any time when you did not have any health insurance coverage?
a. Yes
b. No
c. Don’t know/not sure
10. In regard to your health insurance or health care coverage, how does it compare to a year ago?
a. Better
b. Worse
c. About the same
d. Don’t know/not sure
11. Have you ever been denied health insurance?
a. Yes
b. No
c. Don’t know/not sure
12. Have you ever received disability benefits (do not include Medicaid)?
a. Yes
b. No
c. Don’t know/not sure
13. Have you ever been denied disability benefits (do not include Medicaid)?
a. Yes

b. No
c. 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?
a. Yes
b. No
c. 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?
a. Yes
b. No

c. Don’t know/not sure
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.)
a. Clinic or health center
b. Doctor's office or HMO
c. Hospital emergency room
d. Hospital outpatient department
e. Some other place
f. Don't go to one place most often (Skip to Question 20)
g. Don’t know/not sure
17. 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?
a. Yes
b. No
c. Don’t know/not sure
18. At any time in the past 12 months did you CHANGE the place where you USUALLY go for health care?
a. Yes
b. No (Skip to Question 20)
c. Don’t know/not sure (Skip to Question 20)
19. Was this change for a reason related to health insurance?
a. Yes
b. No
c. Don’t know/not sure
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)?

a. None
b. 1
c.
d.
e.
f.
g.
h.
i.
j.

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

21. 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.)
a. None (Skip to Question 23)
b. 1
c. 2-3
d. 4-5
e. 6-7
f. 8-9
g. 10-12
h. 13-15
i. 16 or more
j. Don’t know/not sure
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?
a. None
b. 1
c. 2-3
d. 4-5
e. 6-7
f. 8-9
g. 10-12
h. 13-15
i. 16 or more
j. Don’t know/not sure
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.
a. None (Skip to Question 25)
b. 1
c. 2-3

d.
e.
f.
g.
h.
i.
j.

4-5
6-7
8-9
10-12
13-15
16 or more
Don’t know/not sure

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?
a. Please enter a number (enter “0” if none with a heart doctor or at a cardiology clinic):

b. Don’t know/not sure
25. When is the last time you saw a heart doctor?
a. Less than 1 year
b. 1-2 years
c. 3-5 years
d. More than 5 years (Skip to Question 27)
e. Never seen one (Skip to Question 27)
f. Don’t know/not sure
26. Who are the majority of patients that your primary heart doctor usually sees?
a. Children and adolescents (pediatric cardiologist) (Skip to Question 28)
b. Adults who have had their heart problem since birth (adult congenital heart cardiologist) (Skip
to Question 28)
c. Adults (adult cardiologist) (Skip to Question 28)
d. Don’t know/not sure (Skip to Question 28)
27. If you have not seen a heart doctor in the last 5 years or ever, why? Please check all that apply.
a. Felt well
b. Did not think I needed to see a heart doctor
c. Doctor told me I no longer needed to see a heart doctor
d. My parents stopped taking me
e. Changed or lost my insurance
f. Moved to a different city or town
g. Did not like my heart doctor
h. Couldn't find a heart doctor
i. Other
j. Don’t know/not sure
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?

a. Yes
b. No
c. Don’t know/not sure
The next few questions ask about your physical and mental health and your interactions with others. Please
place an X in the box that corresponds to your answer.
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 social activities and
relationships?
34. 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)?

Excellent

Very Good

Good

Fair

Poor

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?
a. Completely
b. Mostly
c. Moderately
d. A little
e. 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?
a. Never
b. Rarely
c. Sometimes
d. Often
e. Always

37. In the past 7 days, how would you rate your fatigue on average?
a. None
b. Mild
c. Moderate
d. Severe
e. Very severe
38. In the past 7 days, how would you rate your pain on average? Please place a check mark in the box
that corresponds to your answer choice.
No
pain

--------------------------------------------------------------------------------------------------

0

1

2

3

4

5

6

Worst
pain
imaginable

7

39. Over the last 2 weeks, how often have you been bothered by any of the following problems? Please
place a check mark in the box that corresponds to your answer choice.
Not at all

Several days

More than half
the days

Nearly every day

Little interest
or pleasure
in doing
things
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.
40. Are you deaf or do you have serious difficulty hearing?
a. Yes
b. No
41. Are you blind or do you have serious difficulty seeing, even when wearing glasses?
a. Yes
b. No
42. Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating,
remembering, or making decisions?
a. Yes
b. No

43. Do you have serious difficulty walking or climbing stairs?
a. Yes
b. No
44. Do you have difficulty dressing or bathing?
a. Yes
b. No
45. Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as
visiting a doctor’s office or shopping?
a. Yes
b. No
Please rate how concerned you are about the following (Please place a check mark in the box that corresponds
to your answer choice.):
Not at all
concerned
46.

Your future health

47.

Your ability to have
children

48.

Your overall heart health

Not very
concerned

Somewhat
concerned

Very concerned

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

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.
a. Height in feet and inches (please give number)
_ft.
in.
b. Height in meters or centimeters (please give number)
_m.
_cm.
c. Don’t know/not sure
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.
a. Weight in pounds (please give number)
pounds

b. Weight in kilograms (please give number)
c. Don’t know/not sure

kilograms

52. What is the most you have ever weighed in your life? [Do not include any times when you were
pregnant.] Please answer in either pounds or kilograms, not both.
a. Weight in pounds (please give number)
pounds
b. Weight in kilograms (please give number)
kilograms
c. Don’t know/not sure
Men-Skip to question 60
WOMEN only--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 special concerns about
becoming pregnant because of your heart problem?
a. Yes
b. No
c. 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?
a. Yes
b. No
c. 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?
a. Yes
b. No
c. 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?
a. Yes
b. No
c. Don’t know/not sure
57. Have you ever been pregnant?
a. Yes
b. No (Skip to Question 60)
c. Don’t know/not sure (Skip to Question 60)
58. How many times have you been pregnant?
a. Please enter a number:

59. How many times have you given birth?
a. Please enter a number (enter “0” if never given birth):

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).
60. Do you consider yourself to be Hispanic or Latino?
a. Yes
b. No
c. Don’t know/not sure
61. What race or races do you consider yourself to be? Please select one or more.
a. American Indian or Alaska Native
b. Asian
c. Black or African American
d. Native Hawaiian or Pacific Islander
e. White
f. Don’t know/not sure
62. How many times have you been married (or lived as married)?
a. Please enter a number (enter “0” if never been married or lived as married) :
Questions 63 through 68 ask about your education and work history.
63. What is the highest degree or grade you have completed?
a. Never attended school or only attended kindergarten
b. Less than 9th grade
c. 9th to 12th grade, no diploma
d. High school graduate, GED, or alternative
e. Some college, no degree
f. Associate degree
g. Bachelor’s degree
h. Graduate or professional degree
i. Don’t know/not sure
64. In elementary, junior, or high school were you ever in a special education program? Please select all that
apply.
a. Special education

b.
c.
d.
e.

Advanced placement
Homebound education
Not in any of these programs (Skip to Question 66)
Don’t know/not sure (Skip to Question 66)

65. If you were in a special education program, what grades were you in at the time? Please select all that
apply.
a. Kindergarten-3rd grade
b. 4th-6th grade
c. 7th-12th grade
d. Don’t know/not sure
66. During the last 12 months, did you work for pay at any time at a job or business? Please select all that
apply.
a. Yes– Full time
b. Yes – Part time
c. No
d. 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?
a. Yes
b. No
c. Still in school
d. 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?
a. Please enter a number (enter “0” if did not miss school or work because of illness in last 12
months):
b. I do not attend school nor do I work for pay.

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

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).
70. What name were you given at birth?
(please print)
71. If your name has changed since birth, what is your current name?
(please print)
72. What is your date of birth?
Month

Day

Year

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.

73. 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):

74. May we contact you in the future to participate in similar surveys?
Yes
No
75. If yes, please provide your current mailing address and/or email address, depending on how you would
like to be contacted.

(street address)

Email address (please print):

(city)

(state)

(zip code)

76. 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 only if we are
unable to reach you at your home address and/or email address. (please print)

(Name)

(street address)

Thank you for your time. It is truly appreciated.

(city)

(state)

(zip code)