Initial Participant Survey - Incident Case Child Version

SEARCH for Diabetes in Youth Study

Attachment 4A2a_Initial Participant Survey_incident case_child r102017

SEARCH - Initial Participant Survey - Incident

OMB: 0920-0904

Document [pdf]
Download: pdf | pdf
Form Approved
OMB No. 0920-0904
Exp. Date 08/31/2017

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W

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Office Use PID: _______________________________ Inc/Prev. Year_______________________________

SEARCH
For Diabetes in Youth

* Note: Fonts are Times New Roman & Smudger LET Plain.

Initial Participant Survey
Parent / Guardian Version

This survey is to be filled out by a Parent or
legal Guardian of the child age less than 18
years old who has diabetes.
Your answers will be kept confidential and
will be used for study purposes only.
Public reporting burden of this collection of information is
estimated to average 10 minutes per response, including the
time for reviewing instructions, searching existing data sources,
gathering and maintaining data needed, and 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 Reports
Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta,
Georgia 30333; ATTN: PRA (0920-0904)
Privacy Act Statement
The information you are being asked to provide is authorized to be collected
under Section 301 of The Public Health Service Act (42 USC 241). Providing
this information is voluntary. CDC will use this information in its study,
SEARCH for Diabetes in Youth, in order to: (1) Assess the incidence and
prevalence of diabetes among youth in the U.S. by diabetes type, and by
demographics including age, sex, and race/ethnicity; and (2) Assess temporal
trends in diabetes incidence in major US racial/ethnic groups, including
African Americans, Hispanics, American Indian Tribes, Asian Americans,
Pacific Islanders, by age, sex, and diabetes type. This information will be
shared with third party clinical entities with whom CDC has entered into an
Agreement to assist with carrying out this Study.

SEARCH 3 Registry Study — Initial Participant Survey (Parent / Guardian Verison) revised 3-22-16

SEARCH for Diabetes in Youth

We want to learn more about children and young adults who have
diabetes, and how diabetes affects their lives. You can help us learn more
by answering the following questions. In this survey, we will use the term
CHILD to refer to YOUR CHILD that has diabetes..
1.	 What is TODAY’S date?	 ______ /______ /___________
		
Month
Day
Year
	
For example, if today is May 1, 2016, write in 05/01/2016
2.	

What is your child’s sex?	

1q

Female 	 2 q Male

3. 	 What is your CHILD’S BIRTHDATE??	
		
	

______ /______ /___________
Month

Day

Year

4.	

Has your doctor or nurse ever told you or your child that your child has diabetes?

	

1q

YES.

	

2q

NO. STOP. Please turn to page 9 and complete this information.

Please mail the survey to us in the stamped envelope.

Thank You

for filling out these questions.

1

5.	
	

N

When did a doctor or nurse first tell you that your child had diabetes?
This means when your child was told about his/her diabetes diagnosis.

			
			

______ /______ /___________
Month

Day

Year

W

6.	
	
	

Please list all the places your child lived during the year he/she was diagnosed with
diabetes. For example if your child was diagnosed in April 2016, list everywhere he/she
lived from January 2016 through December 2016.

	
	

_______________________________________________________________________
City 	
State 	
Zip Code	
County

	
	

_______________________________________________________________________
City 	
State 	
Zip Code	
County

	
	

_______________________________________________________________________
City 	
State 	
Zip Code	
County

We are going to ask you some questions about when your child first got diabetes, and how
your child’s diabetes is treated. Please answer the questions as best as you can. If you do
not know the answer to a question, leave it blank.
7.	
	

How did you first find out that your child had diabetes?
(Check Yes or No for each question)
Yes

No

1q

2q

Yes

No

1q

2q

Yes

No

1q

2q

Yes

No

1q

2q

S

I found out that my child had diabetes because my child was thirsty,
had to pee a lot, or got sick very quickly.
I found out that my child had diabetes at a yearly physical or check-up
with their regular doctor.
I found out that my child had diabetes when his/her blood sugar was
checked at a health fair or by a school nurse.
I found out that my child had diabetes when she was pregnant and the
diabetes did not go 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.
________________________________________________________________________________________

* Note: Fonts are Times New Rom

________________________________________________________________________________________
________________________________________________________________________________________

2

SEARCH for Diabetes in Youth

N

8.	
	

Has a doctor or nurse told you or your child that his/her diabetes was caused by:
(please check Yes or No for each question)

	

8a.	 Cystic fibrosis?

	

8b.	 Cancer or medicine to treat cancer?

	

8c.	 Another medicine?

		

9.	

E

1q

Yes

1q

2q

Yes

No

2q

1q

Yes

2q

No

No

If Yes, what was the medicine?______________________________________________

Since being diagnosed with diabetes, has your child ever taken insulin?
1q

Yes

2q

No (If No, skip to question 10)

	

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

	

9b.	 Is he/she taking insulin now?

1q

Yes

2q

SEARCH
For Diabetes in Youth

1q

Yes

2q

No

2q

No

No

10.	 How else does your child take care of his/her diabetes now?
	
Does he/she: (please check Yes or No for each question)
	

10a.	 Take prescribed tablets (pills) for diabetes?

	

10b.	 Follow a diet/meal plan (for example, carbohydrate counting)?

	

10c.	 Follow an exercise program?

	

10d.	 Any treatments other than insulin, pills, diet, or exercise: (If yes, please list below.)

	

________________________________________________________________________

	

________________________________________________________________________

1q

Yes

2q

1q

Yes

1q

Yes

2q

No

No

11.	 Who does your child usually see for most of his/her care related to diabetes?
	
(Please check only one response).
1. q Pediatrician
2. q Family practice or internal medicine physician
3. q Pediatric endocrinologist/diabetologist (diabetes specialist)
4. q Adult endocrinologist/diabetologist (diabetes specialist)
5. q Another type of physician
6. q Other health care provider (nurse, nurse practitioner, physician assistant,
	
certified diabetes educator, or other)
7. q Unsure

man & Smudger LET Plain.

8. q No current health care provider

SEARCH for Diabetes in Youth

3

Now we would like to learn a bit about your child’s health insurance
12.	 What kind of health insurance plan did your child have when he/she was DIAGNOSED with
diabetes?
And what kind of health insurance plan does your child have NOW?
(Please answer Yes or No for each question for insurance at time of DIAGNOSIS and NOW)

HEALTH INSURANCE TYPE

Health Insurance at
TIME OF DIAGNOSIS

Health Insurance
NOW

YES

NO

YES

NO

12a. Medicaid/Medicare

1q

2q

1q

2q

12b. Private insurance, through employer

1q

2q

1q

2q

12c. Private insurance, purchased on your own

1q

2q

1q

2q

12d. Private insurance, purchased through the health
insurance exchange or marketplace

1q

2q

1q

2q

12e. Military

1q

2q

1q

2q

12f. School or college-based insurance

1q

2q

1q

2q

12g. Tribe/Indian Health Service

1q

2q

1q

2q

12h. Any other or type unknown

1q

2q

1q

2q

12i. No health insurance

1q

2q

1q

2q

13.	 Is your child Spanish/Hispanic/Latino? (Mark X in the “No” box if not Spanish/Hispanic/Latino)

4

		

q No, not Spanish/Hispanic/Latino q Yes, Puerto Rican

		

q Yes, Mexican, Mexican American, Chicano q Yes, Cuban

		

q Yes, other Spanish/Hispanic/Latino – Print group in the space below:

		

__________________________________________________________

SEARCH for Diabetes in Youth

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

		

q White			q Black, African American
q American Indian or Alaska Native; Print name of enrolled or principal tribe below:

		

____________________________________________________________________

		

q Asian Indian		

q Japanese	

q Native Hawaiian

		

q Chinese		

q Korean	

q Guamanian or Chamorro

		

q Filipino		

q Vietnamese	

q Samoan

		

q Other Asian; Print race:_______________________________________________

		

q Other Pacific Islander; Print race:_______________________________________

15.	 What is the highest degree or level of school that your child’s parent/guardian #1 and parent/
	
guardian #2 have completed?

Parent /
Guardian #1

Parent /
Guardian #2

15a. Any education less than a high school graduate, no
diploma or GED

1q

1q

15b. High school graduate, (high school diploma) or
equivalent (for example, GED)

2q

2q

15c. Business/technical school, associate degree (AA, AS)
or some college

3q

3q

15d. Bachelor degree (for example, BA, AB, BS) (4-year)

4q

4q

15e. Master degree (for example MA, MS, MEng, Med.,
MSW)

5q

5q

15f. Professional or doctorate degree (for example, MD,
DDS, JD, PhD, EdD)

6q

6q

15g. Don’t know

7q

7q

SEARCH for Diabetes in Youth

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16.	 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? (Income could be from salaries, social security,
	
retirement, Medicaid, disability, alimony, child support, etc.)
Check only one category:
1. q Less than $5,000 		

6.

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

2. q $5,000 through $11,999 	
3. q $12,000 through $15,999 	
4. q $16,000 through $24,999 	
5. q $25,000 through $34,999 	

17.	 How many people are currently living in the Parent’s/Guardian’s household?
17a. Total number of people
17b. Number of children (less than 18 years)
17c. Number of adults
17d. Please mark which adults live in the household
YES

NO

Child’s mother

q

q

Child’s father

q

q

Child’s guardian

q

q

Other adult(s)

q

q

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.
18.	 Does your child’s biological mother have diabetes?
		
	

18a.	

		

1q

Yes

2q

No

3q

Don’t know

q If Yes, how old was she when she was diagnosed with diabetes?
_______ years q Don’t know

19.	 Did your 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.
		

1q

Yes

2q

No

3q

Don’t know

20.	 Does your child’s biological father have diabetes?
		
	

Yes

2q

No

3q

Don’t know

20a.	 q If Yes, how old was he when he was diagnosed with diabetes?

		

6

1q

_______ years

q Don’t know

21.	 Does your child have any full or half brothers?
		

1q

		

(If No or Don’t know, skip to question 22)

	

2q

No

3q

Don’t know

21a.	 If Yes, how many full or half brothers does your child have?

		
	

Yes

_______ brothers

21b.	 If Yes, how many full or half brothers have diabetes?

		

_______ brothers

22.	 Does your child have any full or half sisters?
		

1q

		

(If No or Don’t know, skip to question 23)

	

2q

No

3q

Don’t know

22a.	 If Yes, how many full or half sisters does your child have?

		
	

Yes

_______ sisters

22b.	 If Yes, how many full or half sisters have diabetes?

		

_______ sisters

23.	 Was your child with diabetes born in the United States?
	

1q

Yes (If Yes, go to question 24)

	

2q

No	

		

23a. If no, in what country was your child born? Write in country of birth.

		
23b. In what year did your child come to the United States to live?
3 q Don’t know; prefer not to say
	

SEARCH for Diabetes in Youth

	

Write in year.

7

24.	 Was your child’s mother born in the United States?
	

1q

Yes	

	

2q

No	

		

24a. If no, in what country was the child’s mother born? Write in country of birth.

			
		

3q

q Don’t know country

24b. In what year did the child’s mother come to the United States? 	 	

			
	

(If Yes, go to question 25)

Write in year:.

q Don’t know year 		

Don’t know; prefer not to say

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

1q

Yes	

	

2q

No

		

25a. If no, in what country was the child’s father born? Write in country of birth.

			
		

8

3q

q Don’t know country

25b. In what year did the child’s father come to the United States?

			
	

(If Yes, go to next page)

q Don’t know year 		

Don’t know; prefer not to say

		

Write in year:

Contact Information
We would like to be able to reach you in the future to provide information about the SEARCH study.
To do this, please provide the best contact information below.
A.	

Name of person filling out this form

	

First Name

	

Middle Name

	

Last Name

B.	

Relationship to child: __________________________________________________________

A.	

What is your child’s name?

	

First Name

	

Middle Name

	

Last Name

	

Are there any other names that he / she uses?

	

Other first names

B.	

Full Name of Parent or Guardian #1 of child (Please note if Parent or Guardian.)

	

First Name

	

Middle Name

	

Last Name

q Parent q Guardian #1

SEARCH for Diabetes in Youth

9

C.	

Full Name of Parent or Guardian #2 of child (Please note if Parent or Guardian.)

	

First Name

	

Middle Name

	

Last Name

q Parent q Guardian #2
D.	

Provide your current address, email and phone number for future contact.?

	

P.O.Box	

	

City

	

State			

	

Email address

Street							

Apt#

Zip

	
Phone number (best)
area code

Is this:

extension

q Home q Work q Cellular Phone q Other

Phone number (other)
area code

Is this:

q

extension

Home

q

Work

q

Cellular Phone

q

Other

Phone number (other)
area code

Is this:

10

extension

q Home q Work q Cellular Phone q Other

SEARCH for Diabetes in Youth

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/or email addresses of a relative or friend, someone who would know
how to contact you if your address or phone number changes.
Contact #1: 	

	

First Name

	

Middle Name

	

Last Name

	

Relationship

	

P.O.Box	

	

City

	

State			

	

Email address

Street							

Apt#

Zip Code

Phone number (best)
area code

extension

area code

extension

area code

extension

Phone number (other)

Phone number (other)

SEARCH for Diabetes in Youth

11

Contact #2: 	

	

First Name

	

Middle Name

	

Last Name

	

Relationship

	

P.O.Box	

	

City

	

State			

	

Email address

Street							

Apt#

Zip Code

Phone number (best)
area code

extension

area code

extension

area code

extension

Phone number (other)

Phone number (other)

Thank You
for filling out this survey.
Please mail it to us in the stamped,
pre-addressed envelope.

12

FOR STUDY USE ONLY

	

Patient ID Number

				

	

Site	

Sub-site	

Sequential ID

Date Completed						

				

Month		

Day		

Year

	

Mode of Administration		

	

Date Reviewed						

				

	

Month		

In Person		

Day		

Month		

Day		

Telephone 	

Mailed 	

CATI

Reviewer Code

Year

Date Entered						

				

Completed by

Data Entry Code

Year

N
W

E

SEARCH
For Diabetes in Youth
SEARCH for Diabetes in Youth

* Note: Fonts are Times New Roman & Smudger LET Plain.

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11-0457 search form english parent


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