Form 0920-1382 CH STRONG KIDS (English, paper)

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS (CHSTRONG KIDS)

As explained in the letter you received with this survey, we are contacting you about this survey because our records show that your child was born with a heart condition. We would like to ask you some questions about your child, their health, and your family.

The survey should be completed by a parent or adult caregiver who lives in this household and who is familiar with your child’s health and health care.

Please answer questions with information about your child with a heart condition only. You may choose to skip any question you do not wish to answer.

Your child’s information

1. What is this child’s age in years?

2. Is this child Hispanic or Latino?

1. Hispanic or Latino

2. Not Hispanic or Latino

3. What is this child’s race? (Select all that apply)

1. American Indian or Alaska Native alone

2. Asian

3. Black or African American

4. Native Hawaiian or Other Pacific Islander

5. White

Your child’s heart condition

4. What is the name of the heart condition that this child was born with? (Select all that apply)

   1. Aortic valve stenosis

   2. Atrial septal defect (ASD)

   3. Atrioventricular septal defect (AVSD) or Atrioventricular canal (AV canal)

   4. Bicuspid aortic valve

   5. Coarctation of aorta

   6. Ebstein anomaly

   7. Hypoplastic left heart syndrome (HLHS)

   8. Patent ductus arteriosus (PDA)

   9. Pulmonary atresia

   10. Pulmonary valve stenosis

   11. Single ventricle (double inlet left ventricle)

   12. Tetralogy of Fallot (TOF)

   13. Transposition of the great arteries (TGA)

   14. Tricuspid atresia

   15. Truncus arteriosus

   16. Ventricular septal defect (VSD)

   17. Other (Please specify) ______________________________

   18. Don’t know/not sure

   19. No heart condition that I know of (Please answer remaining questions to the best of your ability)

5. Has this child ever had surgery for the heart condition they were born with? Heart surgery will result in scars on the middle of the chest, side, or back.

   1. Yes

   2. No

   3. Don’t know/not sure

6. What type of information or help should be available to caregivers of children born with heart condition?

7. When this child was first diagnosed with a heart condition, were you provided enough information on what this meant for their emotional, social and physical health?

   1. Yes

   2. No

   3. Don’t know/not sure

Your child’s heart doctors

8. When is the last time this child saw a heart doctor?

1. Less than 1 year

2. 1-2 years

3. 3-5 years - Go to question 13

4. More than 5 years - Go to question 13

5. Never seen one - Go to question 13

9. How many health care provider visits were with a heart doctor or at a cardiology clinic (clinic that only sees patients with heart conditions) in the past 12 months?

1. _ _ _ Numeric response

10. Who are the majority of patients that this child’s primary heart doctor usually sees?

1. Children and adolescents (pediatric cardiologist)

2. Adults (adult congenital heart cardiologist or adult cardiologist) - Go to question 12

3. Don’t know/not sure

11. Has a doctor or other health care provider talked with you about when this child will need to see heart doctors who treat adults (adult congenital heart cardiologist or adult cardiologist)?

1. Yes

2. No

12. In the past 2 years, how often has this child’s heart doctor…?

	Always	Usually	Sometimes	Never
Spent enough time with this child
Listened carefully to you
Shown sensitivity to your family’s values and customs
Provided the specific information you needed concerning this child
Helped you feel like a partner in this child’s care
Discussed with you the range of options to consider for this child’s health care or treatment
Made it easy for you to raise concerns or disagree with recommendations for this child’s health care
Worked with you to decide together which health care and treatment choices would be best for this child

Go to instructions before question 14.

13. If this child has not seen a heart doctor in the last 2 years or ever, why? (Select all that apply)

1. This child felt well

2. Did not think this child needed to see a heart doctor

3. Doctor told me this child no longer needed to see a heart doctor

4. Changed or lost insurance

5. Moved to a different city or town

6. Did not like this child’s heart doctor

7. Couldn't find a heart doctor

8. I had too many other things going on

9. There were issues related to cost

10. I chose to postpone or cancel appointments due to COVID-19

11. This child’s heart doctor postponed or cancelled appointments due to COVID-19

12. Other (Please specify) _____________________________

Your child’s general health

If your child is younger than 6 years old, go to question 16.

14. What is this child’s CURRENT height? (Answer in either feet and inches or meters and centimeters)

1. ­­­___ feet AND ___ inches

2. ___ meters AND ___ centimeters

15. How much does this child CURRENTLY weigh? (Answer in either pounds or kilograms)

    1. ___ pounds

    2. ___ kilograms

16. In general, how would you describe this child’s health?

1. Excellent

2. Very good

3. Good

4. Fair

5. Poor

Your child’s medical conditions

17. Has a doctor or other health care provider EVER told you that this child has…?

	Yes	No
Anxiety problems
Depression
Developmental delay
Behavioral or conduct problems
Intellectual disability
Speech or other language disorder
Learning disability
Attention Deficit Disorder or Attention Deficit/Hyperactivity Disorder, that is, ADD or ADHD
Autism, Autism Spectrum Disorder, Asperger’s Disorder, or Pervasive Developmental Disorder (PDD)
Diabetes
Down Syndrome
Other genetic or inherited condition
Heart failure
Other (Please specify) ___________________________________

18. Does this child have any of the following?

	Yes	No
Deafness or problems with hearing
Blindness or problems with seeing, even when wearing eyeglasses
If your child is younger than 6 years old, go to question 19.
Serious difficulty walking or climbing stairs

Your child’s healthcare needs

19. Does this child CURRENTLY need or use medicine prescribed by a doctor, other than vitamins?

1. Yes

2. No

20. Does this child need or use more medical care, mental health, or educational services than is usual for most children of the same age?

1. Yes

2. No

21. Is this child limited or prevented in any way in their ability to do the things most children of the same age can do?

1. Yes

2. No – Go to question 23

22. To what extent do this child’s health conditions or problems affect their ability to do things?

1. Very little

2. Somewhat

3. A great deal

23. Does this child need or get special therapy, such as physical, occupational, or speech therapy?

1. Yes

2. No

24. Does this child have any kind of emotional, developmental, or behavioral problem for which they need treatment or counseling?

1. Yes

2. No

If you answered “Yes” to any questions in this section (questions 19-24), continue to question 25. Otherwise, go to the next section.

25. If YES to any of the questions in this section (questions 19-24), is it because of ANY medical, behavioral, or other health condition that is expected to last 12 months or longer?

1. Yes

2. No

Your child’s school/learning history

If your child is younger than 3 years old, go to question 46. If your child is between 3 and 5 years old, go to question 34. Otherwise, continue to question 26.

26. What grade is this child currently in? (If summer, what is the highest grade level this child has already completed)?

1. Kindergarten

2. 1^st grade

3. 2^nd grade

4. 3^rd grade

5. 4^th grade

6. 5^th grade

7. 6^th grade

8. 7^th grade

9. 8^th grade

10. 9^th grade

11. 10^th grade

12. 11^th grade

13. 12^th grade

27. Since starting kindergarten, has this child repeated any grades?

1. Yes

2. No

28. DURING THE PAST 12 MONTHS, about how many days did this child miss school because of their heart condition, illness, or injury?

1. No missed school days

2. 1-3 days

3. 4-6 days

4. 7-10 days

5. 11 or more days

6. This child was not enrolled in school

29. Has this child EVER had any of the following special education or early intervention plans? (Select all that apply)

1. Individualized Family Service Plan or IFSP (used for early intervention services in children younger than 3)

2. Individualized Education Program or IEP (used for special education services in children 3 or older)

3. 504 Plan (sometimes used for special education services instead of or in addition to an IEP)

4. Other (Please specify) __________________________________

5. No, this child has never had a plan for special education

If your child is younger than 12 years old, go to question 31. Otherwise, continue to question 30.

30. How likely do you think it is that this child will…?

	Definitely Will	Probably Will	Probably Won’t	Definitely Won’t	Don’t Know	Already Has
Get a regular high school diploma (A regular high school diploma includes a “GED” but does not include a certificate of completion or a special diploma for students in special education.)
Attend school after high school (including technical or trade school)
Attend a special training program after high school for persons with intellectual disabilities
Complete a technical or trade school program
Graduate from a 2-year or community college
Graduate from a 4-year college
Get a driver’s license
Eventually live away from home on their own without supervision
Eventually live away on their own with supervision
Eventually get a paid job (This includes any paid job -- child does not need to make enough to support self. This can include sheltered or supported employment.)
Earn enough to support themself without financial help from their family or government benefit programs

Your child’s activities and social environment

31. DURING THE PAST WEEK, on how many days did this child exercise, play a sport, or participate in physical activity for at least 60 minutes?

1. 0 days

2. 1-3 days

3. 4-6 days

4. Every day

32. DURING THE PAST 12 MONTHS, did this child participate in…?

	Yes	No
A sports team or did he or she take sports lessons after school or on weekends
Any clubs or organizations after school or on weekends
Any other organized activities or lessons, such as music, dance, language, or other arts
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

33. DURING THE PAST 12 MONTHS, how often was this child bullied, picked on, or excluded by other children?

1. Never

2. 1-2 times (in the past 12 months)

3. 1-2 times per month

4. 1-2 times per week

5. Almost every day

34. Compared to other children their age, how much difficulty does this child have making or keeping friends?

1. No difficulty

2. A little difficulty

3. A lot of difficulty

Your child’s readiness to learn

If your child is between 3 and 5 years old, continue to question 35. Otherwise, go to question 46.

35. How often does this child share toys or games with other children?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

36. How often does this child show concern when they see others who are hurt or unhappy?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

37. How often does this child play well with other children?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

38. How often can this child recognize and name their own emotions?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

39. How often does this child have difficulty when asked to end one activity and start a new activity?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

40. How often does this child lose their temper?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

41. How often does this child have trouble calming down?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

42. How often does this child have difficulty waiting for their turn?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

43. How often does this child get easily distracted?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

44. How often can this child focus on a task you have given them for at least a few minutes? For example, simple chores?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

45. How often does this child keep working at a task even when it is hard for them?

    1. Always

    2. Most of the time

    3. About half of the time

    4. Sometimes

    5. Never

Your child’s health care

46. Where does this child usually go when they are sick or you need advice about their health?

1. This child does not have a usual place for health care or advice when sick

2. Doctor's office

3. Hospital emergency room

4. Hospital outpatient department

5. Urgent care center

6. Clinic or health center

7. Retail store clinic or "Minute Clinic"

8. School (nurse's office, athletic trainer's office)

9. Some other place

47. DURING THE PAST 12 MONTHS, how many times did this child visit a doctor, nurse, or other health care professional to receive a PREVENTIVE check-up? A preventive check-up is when this child was not sick or injured, such as an annual or sports physical, or well-child visit.

1. 0 visits

2. 1 visit

3. 2 or more visits

48. DURING THE PAST 12 MONTHS, how many times did this child visit a hospital emergency room?

1. None

2. 1 time

3. 2 or more times

49. DURING THE PAST 12 MONTHS, was this child admitted to the hospital to stay for at least one night?

1. Yes

2. No

Your child’s unmet needs

50. DURING THE PAST 12 MONTHS, did this child need any of the following health care but it was not received? (Select all that apply)

1. Heart care

2. Other medical care

3. Dental care

4. Vision care

5. Hearing care

6. Mental health services

7. Other (Please specify) ______________________________

8. This child has received all the healthcare they needed in the past 12 months - Go to question 52

51. Did any of the following reasons contribute to this child not receiving needed health services?

	Yes	No
This child did not have health insurance that covered the services needed
This child was not eligible for the services
The services this child needed were not available in your area
There were problems getting an appointment when this child needed one
There were problems with getting transportation or child care
I had too many other things going on
The clinic or doctor’s office wasn’t open when this child needed care
There were issues related to cost
I chose to postpone or cancel appointments due to COVID-19
The clinic or doctor’s office postponed or cancelled appointments due to COVID-19
Other (Please specify) ______________________________

Your child’s insurance

52. Is this child CURRENTLY covered by ANY kind of health insurance or health coverage plan?

    1. Yes

    2. No - If your child is at least 12 years old, go to question 54. Otherwise, go to question 60.

53. Is this child CURRENTLY covered by any of the following types of health insurance or health coverage plans?

	Yes	No
Insurance through a current or former employer or union
Insurance purchased directly from an insurance company, including the Health Insurance Marketplace from the Affordable Care Act (ACA)
Medicaid (including MassHealth, MinnesotaCare, PeachCare, or Georgia Families), Medical Assistance, or any kind of government assistance plan for those with low incomes or a disability
TRICARE or other military health care
Indian Health Service
Other (Please specify) ______________________________

Transition to adult healthcare

If your child is at least 12 years old, continue to question 54. Otherwise, go to question 60.

54. Eligibility for health insurance often changes in young adulthood. Do you know how this child will be insured as he/she becomes an adult?

1. Yes – Go to question 56

2. No

55. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as this child becomes an adult?

    1. Yes

    2. No

56. Has a doctor or other health care provider ever discussed with you this child’s need to see a heart doctor throughout their life?

1. Yes

2. No

57. Has this child’s doctor or other health care provider actively worked with the child to:

	Yes	No	Don’t Know
Make positive choices about his/her health? For example, by eating healthy, getting regular exercise, not using tobacco, alcohol or other drugs, or delaying sexual activity.
Gain skills to manage his/her health and health care? For example, by understanding current health needs, knowing what to do in a medical emergency, or taking medications he/she may need.
Understand the changes in health care that happen at age 18? For example, by understanding changes in privacy, consent, access to information, or decision-making.

58. How prepared do you feel this child is to make positive choices about his/her health, manage his/her own health and health care, and handle changes in health care that happen at age 18?

    1. Very prepared

    2. Somewhat prepared

    3. Not very prepared

    4. Not at all prepared

59. Have this child’s doctors or other health care providers worked with you and this child to create a plan of care to meet their health goals and needs?

    1. Yes

    2. No

60. Please rate how concerned you are about this child’s future health.

1. Very concerned

2. Somewhat concerned

3. Not very concerned

4. Not at all concerned

Immunizations

61. DURING THE PAST 12 MONTHS, has this child had a flu vaccination? A flu vaccination is usually given in the fall and protects against influenza for the flu season.

1. Yes

2. No

COVID-19

62. Has this child ever had coronavirus or COVID-19 (based on a positive test for COVID-19 or a health professional telling you the child had COVID-19)?

1. Yes

2. No

3. Did not receive results

63. Please select the statement that best describes this child regarding the COVID-19 vaccine.

1. This child has received all recommended doses of vaccine for COVID-19 - Go to question 65

2. This child has received some but not all recommended doses of vaccine, and I intend for them to receive all recommended doses - Go to question 65

3. This child has received some but not all recommended doses of vaccine, and I do not intend for them to receive all recommended doses

4. This child has not received any vaccine for COVID-19

5. Other

64. What are your reasons for choosing not to get this child fully vaccinated for COVID-19? (Select all that apply)

1. I’m concerned about the potential side effects of the vaccine

2. I feel the vaccines were created too quickly

3. I don’t believe the vaccines are effective at preventing the spread of COVID-19

4. I’m not concerned about this child contracting COVID-19

5. I’m generally opposed to vaccinations

6. A friend or family member had a bad reaction to the vaccine

7. I don’t think that a vaccine is necessary because COVID-19 is not a serious threat

8. This child’s doctor advised me not to get this child vaccinated

9. Other (Please specify) _______________________

10. I prefer not to say

About you

65. How are you related to this child?

1. Biological, adoptive, or step parent

2. Foster parent

3. Other: Relative

4. Other: Non-relative

66. What is your age in years?

    1. 19 or younger

    2. 20-29

    3. 30-39

    4. 40-49

    5. 50-59

    6. 60-69

    7. 70 or older

67. What is the highest grade or level of school you have completed?

    1. 12th grade or less; no diploma

    2. High school graduate or GED completed

    3. College Graduate or higher

68. Which of the following best describes your current employment status?

1. Employed full time

2. Employed part-time

3. Not employed or working WITHOUT pay

69. In general, how is your mental or emotional health?

1. Excellent

2. Very good

3. Good

4. Fair

5. Poor

70. How well do you feel that you are handling the day-to-day demands of raising a child with a heart condition?

1. Very well

2. Somewhat well

3. Not very well

4. Not well at all

71. DURING THE PAST 12 MONTHS, was there someone that you could turn to for day-to-day emotional support with parenting or raising a child with a heart condition?

1. Yes

2. No – Go to question 73

72.  Did you receive support from…?

	Yes	No
Spouse or domestic partner
Other family member or close friend
Health care provider
Place of worship or religious leader
Support or advocacy group related to specific health condition
Peer support group
Counselor or other mental health professional
Other person (Please specify) ______________________________

73. DURING THE PAST 12 MONTHS, did your family have problems paying for any of this child’s medical or health care bills?

1. Yes

2. No

74. DURING THE PAST 12 MONTHS, have you or other family members…?

	Yes	No
Left a job or taken a leave of absence because of this child’s health or health conditions
Cut down on the hours you work because of this child’s health or health conditions
Avoided changing jobs because of concerns about maintaining health insurance for this child

75. IN AN AVERAGE WEEK, how many hours do you or other family members spend providing health care at home for this child? Care might include changing bandages or giving medication and therapies when needed.

1. This child does not need health care provided at home on a weekly basis

2. Less than 1 hour per week

3. 1-4 hours per week

4. 5-10 hours per week

5. 11 or more hours per week

76. At any time DURING THE PAST 12 MONTHS, even for one month, did anyone in your family receive…?

	Yes	No
Cash assistance from a government welfare program
Food stamps or Supplemental Nutrition Assistance Program (SNAP) benefits
Free or reduced-cost breakfast or lunches at school
Benefits from the Women, Infants, and Children (WIC) program

77. SINCE THIS CHILD WAS BORN, how often has it been very hard to cover the basics, like food or housing, on your family’s income?

1. Never

2. Rarely

3. Somewhat often

4. Very often

Household information

78. Does this child have another parent or adult caregiver who lives in this household?

1. Yes

2. No - Go to question 82

79. How is this other caregiver related to this child?

1. Biological adoptive, or step parent

2. Foster parent

3. Other: Relative

4. Other: Non-relative

80. What is the highest grade or level of school this caregiver has completed?

    1. 12th grade or less; no diploma

    2. High school graduate or GED completed

    3. College Graduate or higher

81. Which of the following best describes this caregiver’s current employment status?

    1. Employed full time

    2. Employed part-time

    3. Not employed or working WITHOUT pay

82. How many children under the age of 18 are now living in the household, not including this child?

1. _ _ _ Numeric response

83. What is the primary language spoken in the household?

    1. English

    2. Spanish

    3. Somali

    4. Other (Please specify) _____________________________

Childhood experiences

The next questions are about events that may have happened during this child’s life. These things can happen in any family, but some people may feel uncomfortable with these questions. As a reminder, you may skip any questions you do not want to answer.

84. To the best of your knowledge, has this child EVER experienced any of the following?

	Yes	No
Parent or guardian divorced or separated
Parent or guardian died
Parent or guardian served time in jail or prison
Saw or heard parents or adults slap, hit, kick, or punch one another in the home
Was a victim of violence or witnessed violence in their neighborhood
Lived with anyone who was mentally ill, suicidal, or severely depressed
Lived with anyone who had a problem with alcohol or drugs
Treated or judged unfairly because of their race or ethnic group
Treated or judged unfairly because of a health condition or disability
If your child is younger than 6, go to question 85.
Treated or judged unfairly because of their sexual orientation

Future needs

85. What expectations do you have for this child in the future?

86. What concerns do you have for this child in the future?

Contact information

87. If you would like to receive periodic updates on the progress and results of this survey, please provide your email address.

_______________________________________

Public reporting burden for this collection of 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 (0920-22CL).