SEARCH Inpatient Survey (Initial Participant Survey - Parent/Guardian)

This survey is to be completed by the PARENT or LEGAL Guardian. We want to learn more
about children and young people who have diabetes. You can help us to do that by filling out
these questions. In this survey, we will use the term CHILD to refer to YOUR child or the child
that you are the LEGAL GUARDIAN for.
Thank you for filling out these questions.
1. What is today’s date? ____/ ____/ ______
Month

Day

Year

For example, if today is May 1, 2002, write in: 05/01/2002

2. What is your child’s sex? 1❑ Female

2

❑ Male

3. Has a doctor or nurse ever told you or your child that your child has diabetes?
1

❑ Yes Î Continue to question 4.

1

❑ No Î STOP. Please turn to page 9 and complete this information.
Please mail the survey to us in the stamped envelope.

THANK YOU FOR ANSWERING THESE QUESTIONS!
-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•-•
We would like to ask you some questions about your child’s birthday, when your child first got
diabetes, and how you or your child takes care of his/her diabetes. Please answer the questions
as best you can. If you do not know the answer to a question, leave it blank.

4. What is your child’s birthdate? ____/ ____/ ______
Month

Day

Year

5. When was your child first told by a doctor or a nurse that he/she had diabetes? This means when your child
was told about his/her diabetes diagnosis.

____/ ____/ ______
Month

Day

Year

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

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6. How did you first find out that your child had diabetes? (check yes or no for each question)
y.
1❑Yes
2❑No My child was thirsty, had to pee a lot, or got sick very quickly

❑Yes

2

1

❑Yes

2

1

❑Yes

2

1

❑Yes

2

1

❑No

I found out that my child had diabetes when he/she had a school
physical or at a regular check-up.

❑No

I found out that my child had diabetes when his/her blood sugar was checked at a
health fair or at school.

❑No

I found out that my child had diabetes when she was pregnant and the diabetes did not
go away after the pregnancy.

❑No

I found out my child had diabetes when she was pregnant but the diabetes went away
after the pregnancy.

If none of the above apply to you, please write on the lines below how you first found out your child had diabetes:

_____________________________________________________________________________
_____________________________________________________________________________
7. What type of diabetes did the doctor or nurse tell you or your child that he/she has? (please check one box)

❑ type 1 diabetes, IDDM, juvenile diabetes
2 ❑ type 2 diabetes NDDM
3 ❑ maturity onset diabetes of youth (MODY)
4 ❑ other type of diabetes, please specify ______________________________________
5 ❑ I don’t know
1

8. Has a doctor or nurse told you or your child that his/her diabetes was caused by: (check yes or no for each
question)
8a. cystic fibrosis?

1

❑Yes

2

❑No

8b. cancer or medicine to treat cancer?
8c. another medicine?

❑Yes

1

2

1

❑Yes

2

❑No

❑No

If yes, what was the medicine? ______________________________
9. Has your child ever taken insulin?

❑Yes

1

2

❑No

(if no, skip to question 11)

9a. Was he/she taking insulin two weeks after diagnosis ?
9b. Is he/she taking insulin now?

❑Yes

1

2

❑Yes

1

2

❑No

❑No

10. How else does your child take care of his/her diabetes now? Does he/she use: (check yes or no for each

❑Yes 2 ❑No
10b. Diet (meal plan)? 1❑Yes 2 ❑No
10c. Exercise? 1❑Yes 2 ❑No
10a. Diabetes tablets (pills)?

question)

1

10d. Any treatments other than insulin, pills, diet,
X or exercise (what?): _____________________
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11. Is your child Spanish/Hispanic/Latino? Mark

X

in the “No” box if not Spanish/Hispanic/Latino.

‰ No, not Spanish/Hispanic/Latino

‰ Yes, Puerto Rican

‰ Yes, Mexican, Mexican Am., Chicano

‰ Yes, Cuban

‰ Yes, other Spanish/Hispanic/Latino - Print group.

12. What is your child’s race? Mark one or more races to indicate what your child considers himself/herself to be.

‰ White
‰ Black, African American
‰ American Indian or Alaska Native – Print name of enrolled or principal tribe.

‰ Asian Indian

‰ Japanese

‰ Native Hawaiian

‰ Chinese

‰ Korean

‰ Guamanian or Chamorro

‰ Filipino

‰ Vietnamese

‰ Samoan

‰ Other Asian – Print race.

‰ Other Pacific Islander – Print race.

‰ Some other race – Print race.

13. When your child first got diabetes, where did he/she live?
CITY

STATE

ZIP CODE

COUNTY

______________________________________________________________________________

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14. When your child first got diabetes, was he/she in the Army, Navy, Air Force, Marines, or Coast Guard?
1

❑Yes

❑ No

❑ Don’t

2

3

know

Now we have some questions about your child’s current height and weight.
15. What is your child’s current weight? ________ Pounds; or _______ Kilograms; ❑ Don’t know
16. What is your child’s current height? _______ Feet _______ Inches; or _______ Centimeters; ❑ Don’t know

Now we would like to ask you a few questions about whether or not other people in your child’s
family have diabetes.
Please provide information about the child’s mother, father, brothers and sisters. This refers to
the child’s biological or natural parents (not step-parents or adoptive parents) and the child’s
full or half brothers and sisters, not those who were adopted or step brothers or step sisters.
Please include information for relatives who are living and those who are deceased.
17. Does the child’s biological mother have diabetes?

❑ Yes

1

❑ No 3❑ Don’t know

2

17a. If yes, how old was she when she was diagnosed with diabetes?
___ ___ years

❑ Don’t know

1

18. Did the child’s biological mother have any form of diabetes when she was pregnant with the child? This
includes Type 1 diabetes, Type 2 diabetes, gestational diabetes, or other types of diabetes.
1

❑ Yes

19. Does the child’s biological father have diabetes?

❑ No 3❑ Don’t know

2

1

❑ Yes

❑ No 3❑ Don’t know

2

19a. If yes, how old was he when he was diagnosed with diabetes?
___ ___ years

20. Does the child have any full or half brothers? 1❑ Yes

❑ Don’t know

1

❑ No 3❑ Don’t know

2

(if no, or don’t know, skip to
question 21)

20a. If yes, how many full or half brothers does your child have? ___ ___ brothers
20b. If yes, how many of the full or half brothers have diabetes? ___ ___ brothers

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21. Does the child have any full or half sisters? 1❑ Yes

❑ No 3❑ Don’t

2

know (if no, or don’t know, skip to
question 22)

21a. If yes, how many full or half sisters does your child have? ___ ___ sisters
21b. If yes, how many of the full or half sisters have diabetes? ___ ___sisters

Now we would like to learn a bit about your child’s health insurance and the health care services.
22. What kind of health insurance plan does your child have now? (Answer yes or no for each question).
a. Medicaid/Medicare/State-funded/ other
Federally-funded

1

❑Yes

2

❑No

b. Private insurance, through employer

1

❑Yes

2

❑No

c. Private insurance, purchased on your own

1

❑Yes

2

❑No

d. Military

1

❑Yes

2

❑No

e. School-based insurance

1

❑Yes

2

❑No

f. Tribe/Indian Health Service

1

❑Yes

2

❑No

g. Any other or type unknown

1

❑Yes

2

❑No

h. None

1

❑Yes

2

❑No

23. What kind of health insurance plan did your child have when he/she was diagnosed with diabetes?
(Answer yes or no for each question).
a. Medicaid/Medicare/State-funded/ other
1❑Yes
2❑No
Federally-funded
b. Private insurance, through employer

1

❑Yes

2

❑No

c. Private insurance, purchased on your own

1

❑Yes

2

❑No

d. Military

1

❑Yes

2

❑No

e. School-based insurance

1

❑Yes

2

❑No

f. Tribe/Indian Health Service

1

❑Yes

2

❑No

g. Any other or type unknown

1

❑Yes

2

❑No

h. None

1

❑Yes

2

❑No

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24. Who does your child usually go to for most of his/her care related to diabetes? (Please check only one
response).

❑ Pediatrician
2❑ Family practice or internal medicine physician
3❑ Pediatric endocrinologist/ diabetologist (diabetes specialist)
4❑ Adult endocrinologist/ diabetologist (diabetes specialist)
5❑ Another type of physician
6❑ Other health care professional (nurse, nurse practitioner, physician assistant, certified
1

diabetes educator, or other)
7

❑ Unsure

The next few questions are related to the education and household income of your family.
25.What is the highest degree or level of school that your child’s mother/guardian and father/guardian have completed?
Mother/guardian
25a. Any education less than a high school graduate, no diploma
or GED
25b. High school graduate (high school diploma) or equivalent
(for example: GED)
25c. Business/technical school, associate degree (AA, AS), or
some college
25d. Bachelor degree (for example, BA, AB, BS) (4-year)

1

❑

1

❑

2

❑

2

❑

3

❑

3

❑

4

❑

4

❑

5

❑

5

❑

6

❑

6

❑

7

❑

7

❑

25e. Master degree (for example, MA, MS, MEng, Med, MSW)
25f. Professional or doctorate degree (for example: MD, DDS,

JD, PhD, EdD)

Father/guardian

25g. Don’t know

26. Which of these categories best describes the total income of all persons living in the Parent’s/ Guardian’s
household for the past 12 months? (check only one category)

❑ Less than $5,000
2❑ $5,000 through $11,999
3❑ $12,000 through $15,999
4❑ $16,000 through $24,999
5❑ $25,000 through $34,999
1

❑ $35,000 through $49,999
7❑ $50,000 through $74,999
8❑ $75,000 through $99,999
9❑ $100,000 and greater
10❑ Don’t know
6

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27. How many people are living in the parent/Guardian’s household?
a. Total number of people _____
b. Number of children (less than 18) _____
c. Number of adults _____ Of the number of adults, how many bring income into the household? _____
28. Was your child with diabetes born in the United States?
1

❑

Yes (If Yes, go to question 29)

2

❑

No

28a. In what country was your child born? _____________________
(write in country of birth)
28b. In what year did your child come to the United States to live? ____________
(write in year)

3

❑

Don’t know/prefer not to say

29. Was the child’s mother born in the United States?
1

❑

Yes (If Yes, go to question 30)

2

❑

No

29a. In what country was the child’s mother born? _____________________
(write in country of birth)

❑

Don’t know country

29b. In what year did the child’s mother come to the United States to live? ____________
(write in year)

❑
3

❑

Don’t know year

Don’t know/prefer not to say

30. Was the child’s father born in the United States?

❑
2❑
1

Yes (If Yes, go to the next page)
No

30a. In what country was the child’s father born? _____________________
(write in country of birth)

❑

Don’t know country

30b. In what year did the child’s father come to the United States to live? ____________
(write in year)

❑
3

❑

Don’t know year

Don’t know/prefer not to say

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

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Contact Information
We would like to be able to reach you and your child to let you know about other parts of the SEARCH
study. To do this, we would like to have the best address and phone number where we can reach you and
your child.
A. What is your child’s name?
_________________________/_________________________/___________________________
First

Middle

Last

Are there any other names that he/she uses?
______________________________________
Other first name(s)

______________________________________
Other last name(s)

B. What are your child’s parent/guardians’ names?
_________________________/_________________________/___________________________
First

Middle

Last

_________________________/_________________________/___________________________
First

Middle

Last

C. What is the best address and phone number to send mail or call?
__________________/_____________________________________________/______________
P.O. Box

Street

Apt. #

_________________________________________/__________________/___________
City

State

Zip Code

Email Address_________________________________________________________________
Phone # (best) ___________/____________-______________

____________

(area code)
Is this: ❑ Home ❑ Work ❑ Cellular phone ❑ Other

Phone # (other) __________/____________-______________

(extension)

____________

(area code)
Is this: ❑ Home ❑ Work ❑ Cellular phone ❑ Other

Phone # (other) __________/____________-______________

(extension)

____________

(area code)
Is this: ❑ Home ❑ Work ❑ Cellular phone ❑ Other

(extension)

What is the best time to call? ❑ morning ❑ afternoon ❑ evening
May we contact you over the weekend? ❑ Yes ❑ No
May we contact you at work? ❑ Yes ❑ No

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

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Who lives at this address (on the previous page)? (check yes or no for each one)
My child does
Child’s Father
Child’s Mother
Child’s Spouse
Other

❑ Yes
1❑ Yes
1❑ Yes
1❑ Yes
1❑ Yes
1

❑ No
2❑ No
2❑ No
2❑ No
2❑ No

2

Does your child usually speak:

❑ English
2❑ Spanish
3❑ Some other language
1

Specify:_______________________________________

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

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Alternate Contact Information
‹ As a part of this study, we may be contacting you in the future. Please provide us with the names, addresses,
phone numbers, and email addresses of two people who could contact you if your address or phone number changes.

Contact #1:
_________________________/_________________________/__________________________
First Name

Middle Name

Last Name

___________________________
Relationship

____________/____________________________________________________________/________________

P.O. Box

Street

Apt. #

_________________________________________/__________________/________________

City

State

Zip Code

Email Address_______________________________________________________
Phone # (best) ___________/____________-______________

__________

(area code)

(extension)

Phone # (other) __________/____________-______________

__________

(area code)

(extension)

Phone # (other) __________/____________-_______________

_________

(area code)

(extension)

Contact #2:
________________________/_________________________/__________________________
First Name

Middle Name

Last Name

___________________________
Relationship

____________/____________________________________________________________/________________

P.O. Box

Street

Apt. #

_________________________________________/__________________/________________

City

State

Zip Code

Email Address_______________________________________________________
Phone # (best) ___________/____________-______________

__________

(area code)

Phone # (other) __________/____________-______________

(extension)

__________

(area code)

Phone # (other) __________/____________-______________

(extension)

__________

(area code)

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

(extension)

11

THANK YOU FOR FILLING OUT THIS SURVEY.
PLEASE MAIL IT TO US IN THE STAMPED PRE-ADDRESSED ENVELOPE.
If you have lost the envelope, please send it to the address below.

SEARCH 3 Registry Study - Initial Participant Survey (Parent/Guardian version) – 12-15-10

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FOR STUDY USE ONLY
Patient ID
Number
Date
Completed

Site

Sub-site

Sequential ID

Completed by
Month

Mode of Administration

Day

1

‰ In-Person

Year

1

‰ Telephone

1

‰ Mailed ‰

CATI

Reviewer Code

Date Reviewed
Month

Day

Year

Date Entered

Data Entry Code
Month

Day

Year

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