Initial Participant Survey - Incident Case Young Adult v

SEARCH for Diabetes in Youth Study

Attachment 4A2b_Initial Participant Survey_incident case_ Adult r 102017...

SEARCH - Initial Participant Survey - Incident

OMB: 0920-0904

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

N
E

W

Office Use PID: _______________________________ Inc/Prev. Year_______________________________

SEARCH
For Diabetes in Youth

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

Initial Participant Survey
Adult Version

This survey is to be filled out by the person
(18 years or older) 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 (Young Adult Verison) revised 5-14-12

We want to learn more about children and adults who have
diabetes, and how diabetes affects their lives. You can help us
learn more by answering the following questions. You may ask
your Parent or another adult to help you.
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 sex?	

1q

Female 	

3. 	 What is your BIRTHDATE??	
		
	

2q

Male

______ /______ /___________
Month

Day

Year

4.	

Has your doctor or nurse ever told you that you have 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 you had diabetes?
This means when you were told about your diabetes diagnosis.

			
			

______ /______ /___________
Month

Day

Year

W

6.	
	
	

Please list all the places you lived during the year you were diagnosed with diabetes. 	
For example if you were diagnosed in April 2016, list everywhere you 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 you first got diabetes, and how
your 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 you 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 I had diabetes because I was thirsty, had to pee a lot,
or got sick very quickly.
I found out that I had diabetes at a yearly physical or check-up with
my regular doctor.
I found out that I had diabetes when my blood sugar was checked at a
health fair or by a school nurse.
I found out that I had diabetes when I 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 you had diabetes.
________________________________________________________________________________________
________________________________________________________________________________________

* Note: Fonts are Times New Rom

________________________________________________________________________________________

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SEARCH for Diabetes in Youth

N

8.	
	

Has a doctor or nurse told you that your 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, have you ever taken insulin?
1q

Yes

2q

No (If No, skip to question 10)

	

9a.	 Were you taking insulin two weeks after diagnosis?

	

9b.	 Are you taking insulin now?

1q

Yes

2q

SEARCH
For Diabetes in Youth

1q

Yes

2q

No

No

10.	 How else do you take care of your diabetes now?
	
Do you: (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

2q

No
1q

Yes

2q

No

No

11.	 Who do you usually see for most of your 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 ask about your health insurance.
12.	 What kind of health insurance plan did you have when you were DIAGNOSED with diabetes?
And what kind of health insurance plan do you 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.	 Are you 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 race? Mark one or more races to indicate what you consider yourself 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 you, your Parent/Guardian #1 and
	
Parent/Guardian #2 have completed?

Yourself

Parent /
Guardian #1

Parent /
Guardian #2

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

1q

1q

1q

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

2q

2q

2q

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

3q

3q

3q

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

4q

4q

4q

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

5q

5q

5q

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

6q

6q

6q

15g. Don’t know

7q

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 your household
	
or the past 12 months? (Income could be from salary, 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 your household, including yourself?
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

Mother

q

q

Father

q

q

Guardian

q

q

Roommate/ Friend

q

q

Spouse/Partner

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
family have diabetes.
Please provide information about your mother, father, brothers, and sisters. This refers to
your biological or natural parents (not step-parents or adoptive parents) and your 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 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 biological mother have any form of diabetes when she was pregnant with you?
	
This includes Type 1 diabetes, Type 2 diabetes, gestational diabetes, or other types of diabetes.
		

6

1q

Yes

2q

No

3q

Don’t know

20.	 Does your biological father have diabetes?
		
	

1q

Yes

2q

No

3q

Don’t know

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

		

_______ years

q Don’t know

21.	 Do you 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 do you have?

		
	

Yes

_______ brothers

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

		

_______ brothers

22.	 Do you 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 do you have?

		
	

Yes

_______ sisters

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

		

_______ sisters

23.	 Were you born in the United States?
	

1q

Yes (If Yes, go to question 24)

	

2q

No	

		

23a. If no, in what country were you born? Write in country of birth.

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

SEARCH for Diabetes in Youth

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24.	 Was your mother born in the United States?
	

1q

Yes	

	

2q

No	

(If Yes, go to question 25)

		

24a. If no, in what country was your mother born? Write in country of birth.

		

q Don’t know country

		

24b. In what year did your mother come to the United States? 	

		

q Don’t know year 		

	

3q

	

Write in year:

Don’t know; prefer not to say

25.	 Was your father born in the United States?
	

1q

Yes	

	

2q

No	

		

25a. If no, in what country was your father born? Write in country of birth.

		

q Don’t know country

		

25b. In what year did your father come to the United States? 			

		

q Don’t know year 		
q Did not come to the United States

		
	

8

(If Yes, go to next page)

3q

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.	

What is your name?

	

First Name

	

Middle Name

	

Last Name

	

Are there any other names that you use?

	

Other first names

	

Other last names

B.	

Full Name of Mother or other adult

	

First Name

	

Middle Name

	

Last Name

q Mother q Other Adult

C.	

C.	

	

First Name

	

Middle Name

	

Last Name

Full Name of Father or other adult

q Father q Other Adult

SEARCH for Diabetes in Youth

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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:

q Home q Work q Cellular Phone q Other

Phone number (other)
area code

Is this:

q Home q Work q Cellular Phone q Other

Phone number (other)
area code

Is this:

10

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

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SEARCH
For Diabetes in Youth
SEARCH for Diabetes in Youth

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

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