SEARCH Health Questionnaire (Parent_Feb 2014) Cohort Study

SEARCH for Diabetes in Youth Study

4b.2_Health Questionnaire (Parent_ Feb 2014)

SEARCH Health Questionnaire (Parent_Feb 2014) Cohort Study

OMB: 0920-0904

Document [pdf]
Download: pdf | pdf
Form Approved 
OMB No. 0920‐0904 
Exp. Date 11/30/2014 
 

(affix label here)
Patient ID
Number

Site

Sub-site

Sequential ID

SEARCH Health Questionnaire – Parent Version
 The purpose of this questionnaire is to learn more about children and adolescents who have diabetes.

This

questionnaire is to be completed by the parent or legal guardian of the child (under age 18) who has
diabetes.

 In the questionnaire, the term “doctor” to refers to the doctor or other health care provider, such as a
nurse.

CO-MORBIDITIES/COMPLICATIONS
1. Has your child ever been tested for any genes related to diabetes?
1

 Yes

1a. Results:
1

 Don’t know

1b. When was the test done?
Month

Year

1c. Where was this test done?
2 No
3

 Don’t know

2. Has a doctor ever told you or your child that he/she has high cholesterol or an abnormal amount of fat in
his/her blood?
1

 Yes

2a. If yes, has a doctor ever prescribed medicine for high cholesterol or high fat?
1

 Yes

2

 No

3

 Don’t know

2b. Is your child now taking prescribed medicine for high cholesterol or high fat?
1

 Yes

2

 No

3

 Don’t know

2c. Has a doctor ever recommended changes in your child’s diet to lower cholesterol?
1
2

 No

3

 Don’t know

 Yes

2

 No

3

 Don’t know

Public reporting burden of this collection of information is estimated to average 15 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). 
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3. Has a doctor ever told you or your child that he/she has high blood pressure?
1

 Yes

3a. If yes, has a doctor ever prescribed any medicine for high blood pressure?
1

 Yes

2

 No

3

 Don’t know

3b. Is your child now taking any medicine for high blood pressure?
1
2

 No

3

 Don’t know

 Yes

2

 No

3

 Don’t know

4. Has a doctor ever told you or your child that he/she had any of the following?
1

 Yes

2

 No

Addison’s Disease

1

 Yes

2

 No

Asthma

1

 Yes

2

 No

Celiac disease

1

 Yes

2

 No

Hyperthyroidism (high thyroid)

1

 Yes

2

 No

Hypothyroidism (low thyroid)

1

 Yes

2

 No

Vitiligo (white skin patches)

5. Has a doctor said that diabetes has affected your child’s kidneys?
1

 Yes

2

 No

3

 Don’t know

6. Has a doctor said that diabetes has damaged the back of your child’s eyes, that is, the retina?
1

 Yes

6a. If yes, did this require laser treatment of the retina?

2

 No

3

 Don’t know

1

 Yes

2

 No

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7. Has your child had any other major illness or medical conditions that we have not asked about?
1

 Yes

2

 No

If yes, please describe:

Questions 8 and 9 are for FEMALES only.
8. Has your child already had her first period?
1

8a. If yes, how old was your child when she had her
first period?

 Yes

1
2

 No

3

 Don’t know

years old

 Don’t know

9. Has a doctor ever told you or your child that your child has polycystic ovaries (PCO, PCOS)?
1

 Yes

2

 No

3

 Don’t know
MEDICAL HISTORY

 The next few questions are about emergency room and hospital visits your child may have had.
10. In the last 6 months, has your child been to the emergency room for any reason?

1

 Yes

2

 No

10a. How many times was your child in the emergency room?

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# of times

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11. In the last 6 months, has your child had one or more night’s hospital stay for any reason?

1

 Yes

2

 No

11a. How many times was your child in the
hospital for one or more nights?

# of times

12. In the past 6 months, has your child had any severe hypoglycemia, that is, very low blood sugar that
required him/her to get help?

1

2

 Yes

12a. How many times?

# of times

12b. How many times was your child given an
injection of glucagon – for hypoglycemia (low
blood sugar)?

# of times

12c. How many times was “911” or life squad/
paramedics called for hypoglycemia?

# of times

12d. How many times did your child go to an
emergency room for hypoglycemia?

# of times

12e. How many times did your child need to stay
overnight at a hospital?

# of times

 No

13. In the past 6 months, has your child had ketoacidosis (often called DKA, frequently with high blood sugar,
vomiting and shortness of breath)?

1

 Yes

13a. How many times?
13b. How many times did this result in an
emergency room visit?
13c. How many times did this result in one or more
night’s hospital stay?

2

# of times

# of times
# of times

 No

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MEDICATION INVENTORY
Insulin Use
14. Was your child ever treated with insulin (shots/pumps) since he/she was diagnosed?
1



No (skip to question 20)

2



Yes

15. If yes, when were insulin shots/pump started?
1



At diagnosis

2



Less than 1 month after diagnosis

3



Within 1-6 months after diagnosis

4



Within 6-12 months after diagnosis

5



1 year or more after diagnosis

16. Did your child ever stop taking insulin?
1



No (skip to question 20)

2



Yes

17. If yes, did that happen…
1



Less than 1st month after diagnosis

2



1-6 months after diagnosis

3



6-12 months after diagnosis

4



1 year or more after diagnosis

18. How long was your child off insulin?
1



Less than 1 month

2



1-6 months

3



6-12 months

4



1 year or more

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19. Did your child ever have any episodes of ketoacidosis (DKA) when insulin was stopped?

 Yes
2 No
3 Don’t know
1

20. How does your child currently treat his/her diabetes? Does your child use: (check yes or no for each)
20a. Diabetes tablets (pills)

1

 Yes

2

 No

20b. Insulin shots, pump, or pen

1

 Yes

2

 No

20c. Diet (meal plan)

1

 Yes

2

 No

20d. Exercise

1

 Yes

2

 No

20e. Other (what?)
21. If your child is currently taking insulin, how often does he/she take insulin each day on average? (if your

child is not currently taking insulin, go to question 24)
1



1 time a day

4



More than 3 times a day

2



2 times a day

5



Insulin pump

3



3 times a day

22. How does your child take insulin?
1



22a. With a syringe (needle)

2



22b. With an insulin pump

3



22c. With an insulin pen
Worksheet

23. What was the dose of insulin (number of units) that your child
took yesterday. (If your child uses an insulin pump, record

the bolus amounts in 23a – 23e, and record the total 24-hour
basal dose in 23f. This may require filling out a worksheet of
hourly basal rates to determine the total basal dose.)

23a.

Breakfast

.

23b.

Lunch

.

23c.

Dinner

.

23d.

Bedtime

.

23e.

Other

23f.

Pump

.
.

Total insulin:

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Is your child under ten years of age?

 Yes (If Yes, continue to Question 24)
 No (If No, skip to question 26)

24. How often did your child miss his/her diabetes medicine including insulin?
1

 Doesn’t take diabetes medicine

2

 Never

3

 1-3 times a month

4

 1-5 times a week

5

 1 time a day

6

 More than 1 time a day

(skip to question 26)

(skip to question 26)

25. Check Yes, No, or Not applicable. When your child misses a diabetes medicine is it because:



Yes

2



No

3

 Not applicable

Forgot



Yes

2



No

3

 Not applicable

Thought it would help to lose weight



Yes

2



No

3

 Not applicable

Worried about low blood sugar



Yes

2



No

3

 Not applicable

Cannot afford insulin supplies or other medicine



Yes

2



No

3

 Not applicable

Don’t want to give insulin when others are around



Yes

2



No

3

 Not applicable

Tired of shots



Yes

2



No

3

 Not applicable

Afraid of needles



Yes

2



No

3

 Not applicable

Other reason (specify)

25a.

1

25b.

1

25c.

1

25d.

1

25e.

1

25f.

1

25g.

1

25h.

1

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Prescribed Medications
26. Is your child taking prescribed medication(s) including insulin?
1

2



Yes (If Yes, document up to 10 medications below. If your child is taking insulin, be certain to include all



No (if No, skip to question 27)

types or preparations.)

1.

______________________________________________

2.

______________________________________________

3.

______________________________________________

4.

______________________________________________

5.

______________________________________________

6.

______________________________________________

7.

______________________________________________

8.

______________________________________________

9.

______________________________________________

10.

______________________________________________

Diabetes Education
 The next few questions are about what you have been taught about diabetes.
27. In the past 12 months have you met with a diabetes
nurse or diabetes educator?

1

 Yes

2

 No

3

 Don’t know

28. In the past 12 months have you met with a dietician or nutritionist, or talked to someone in detail about
your child’s diet?
1

2

 Yes

28a. When he/she was staying one or
more nights in the hospital

1

 Yes

2

 No

3

 Don’t know

28b. As an outpatient

1

 Yes

2

 No

3

 Don’t know

 No

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29. In the past 12 months, which of the following types of diabetes information have you received from your
child’s doctor’s office or health care plan? (Check all that apply)
1

 Information about diabetes camp

1

 Information about diabetes support groups

1

 Written materials about diabetes such as pamphlets or newsletters

1

 Videos or audio tapes

1

 Reminder about upcoming appointments

1

 A copy or explanation of diabetes laboratory or test results

1

 Diabetes information or advice by telephone

1

 Diabetes information or advice in person

1

 How to get diabetes information on the internet

1

 Information about diabetes research studies other than this study

 Below are some questions about your child’s diabetes care and diabetes control.

“Doctor”, is a doctor or

any other health care provider such as a nurse.

30. How would you rate your child’s diabetes care overall: Would you say:

 Excellent
2 Good
3 Fair
4 Poor
1

31. How would you rate: (check the appropriate boxes)
Excellent

Good

Fair

Poor

Not applicable

Diabetes care from the doctor

1



2



3



4



5



Getting answers to your diabetes questions

1



2



3



4



5



Access during emergencies

1



2



3



4



5



Getting explanation of lab results

1



2



3



4



5



Courtesy/personal communication style of
your doctor

1



2



3



4



5



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32. How would you rate your child’s diabetes control: Would you say:

 Excellent
2 Good
3 Fair
4 Needs much work
1

Home Diabetes Care

 Here are some questions about your child’s diabetes care outside of the doctor’s office.
33. Does your child live or stay in more than one home on a regular basis? For example, if the child’s parents
are separated, this would include spending the weekend with the child’s other parent. It would also
include other relatives that your child might live or stay with on a regular basis (at least once per month).
1

2

 Yes



33a. If yes, does he/she live in:
1

 2 households

2

 3 or more households

3

 Don’t know

No, live in one household

34. How much of your child’s diabetes care does your child do for him/herself? Would you say: (check one)

 None
2 Less than 25%
3 25-75%
4 More than 75%
5 All (skip to question 36)
1

35. Who helps your child with his/her diabetes care?
35a. Parent/step parent/guardian

1

 Yes

2

 No

35b. Grandparent

1

 Yes

2

 No

35c. Brother/sister

1

 Yes

2

 No

35d. Another person

1

 Yes

2

 No

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36. Is your child’s blood sugar tested at home or any place other than the doctor’s office?
1

 Yes

36a. How often is your child’s blood sugar checked with a glucose meter (glucometer)? (check one)

 No (if
no, go to
question 37)

 Less than once a week
2 Less than once a day
3 1-2 times a day
4 3 times a day
5 4-6 times a day
6 7 or more times a day
7 Only when you are sick

2

1

36b. Does your child use a continuous glucose monitor (CGM) to measure his/her glucose?

 Yes
2 No (if no go to 36c)
1

36b(1). If yes, how does he/she use the CGM?
1

 He/she has used it through his/her doctor’s office
How often has
he/she used it?

2

 1 time
2 2 or more times
3 Don’t know/not sure
1

 My child has a CGM for use at home
How often does your child use it?

 Rarely/never (0-19% of the time)
 Occasionally (20-39% of the time)
3 About half the time (40-59% of the time)
4 Usually (60-79% of the time)
5 Most of the time (80-99% of the time)
6 Always (100% of the time)
7 Don’t know/not sure
1
2

36c. What do you usually do when the blood sugar test results are running too high or too low?
36c(1). Make changes to the diabetes treatment (insulin dose
or other medications, diet or exercise

1

 Yes

2

 No

36c(2). Call his/her diabetes doctor

1

 Yes

2

 No

36c(3). Talk to his/her diabetes doctor at the next visit

1

 Yes

2

 No

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Provider Care
 These questions are about the doctors or health care providers that your child sees.
37. Who does your child usually see for his/her diabetes care? (Check only one response)


2
3
4
5
6
7
8
9
10
1

11




13
12

Pediatric endocrinologist/diabetologist (diabetes specialist)
Pediatrician
Family practice doctor
General practice doctor
Adult endocrinologist/diabetologist (diabetes specialist)
Internist
Nurse practitioner/physician’s assistant
Nurse diabetes educator
Traditional medicine man, healer, or curandero/curandera
Dietician/Nutritionist
Other (specify)
Don’t know/unsure of what kind of doctor
None/no source of medical care

38. Who does your child usually see for his/her medical needs not related to diabetes? (Check only one response)


2
3
4
5
6
7
8
9
10
11
12
13
1

Pediatric endocrinologist/diabetologist (diabetes specialist)
Pediatrician
Family practice doctor
General practice doctor
Adult endocrinologist/diabetologist (diabetes specialist)
Internist
Nurse practitioner/physician’s assistant
Nurse diabetes educator
Traditional medicine man, healer, or curandero/curandera
Dietician/Nutritionist
Other (specify)
Don’t know/unsure of what kind of doctor
None/no source of medical care

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 Here are questions regarding how often your child sees various medical providers.
39. Who provides medical care for your child? (For each provider checked, indicate the number of visits your

child had with this provider in the past 6 months)
39a.

1

 Yes

2

 No

Pediatric endocrinologist/
diabetologist (diabetes specialist)

# of visits in the
last 6 months

39b.

1

 Yes

2

 No

Pediatrician

# of visits in the
last 6 months

39c.

1

 Yes

2

 No

Family practice doctor

# of visits in the
last 6 months

39d.

1

 Yes

2

 No

General practice doctor

# of visits in the
last 6 months

39e.

1

 Yes

2

 No

Adult endocrinologist/
diabetologist (diabetes specialist)

# of visits in the
last 6 months

39f.

1

 Yes

2

 No

Internist

# of visits in the
last 6 months

39g.

1

 Yes

2

 No

Nurse practitioner/physician’s
assistant

# of visits in the
last 6 months

39h.

1

 Yes

2

 No

Nurse diabetes educator

# of visits in the
last 6 months

39i.

1

 Yes

2

 No

Traditional medicine man, healer,
or curandero/curandera

# of visits in the
last 6 months

39j.

1

 Yes

2

 No

Dietician

# of visits in the
last 6 months

39k.

1

 Yes

2

 No

Eye doctor (optometrist,
ophthalmologist)

39l.

1

 Yes

2

 No

Psychiatrist, psychologist, or
mental health counselor

39m.

1

 Yes

2

 No

Other

(specify)

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# of visits in the
last 6 months
# of visits in the
last 6 months
# of visits in the
last 6 months

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Insurance and Cost of Diabetes Supplies
40. What kind of health insurance or health care plan does your child have? (check yes, no or don’t know for
each one)

40a. Medicaid/Medicare/State-funded/ other Federally-funded

1

 Yes

2

 No

40b. Private insurance, through employer

1

 Yes

2

 No

40c. Private insurance, purchased on your own

1

 Yes

2

 No

40d. Military

1

 Yes

2

 No

40e. School-based insurance

1

 Yes

2

 No

40f. Tribe/Indian Health Service

1

 Yes

2

 No

40g. Any other or type unknown

1

 Yes

2

 No

40h. None (if none, go to question 42)

1

 Yes

2

 No

41. Does your child’s health insurance or health care plan pay for any of his/her… (check yes, no or don’t know for
each one)

41a. Diabetes medicine/insulin

1

 Yes

2

 No

3

 Don’t know

41b. Syringes/pens/needles

1

 Yes

2

 No

3

 Don’t know

41c. Insulin pump and supplies

1

 Yes

2

 No

3

 Don’t know

41d. Home glucose monitor

1

 Yes

2

 No

3

 Don’t know

41e. Monitor strips and related supplies

1

 Yes

2

 No

3

 Don’t know

41f. Diabetes education

1

 Yes

2

 No

3

 Don’t know

41g.

 Not applicable

42. About how much do you spend, on average, in a typical month on diabetes medicine and supplies? (This

does not include costs that are covered or later reimbursed by your child’s insurance plan).

1

 $0 (none)

2

 $1 - $19

3

 $20 - $49

4

 $50 - $99

5

 $100 - $199

6

 $200 or more

7

 Don’t know

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43. How satisfied are you with your child’s current insurance coverage? Would you say:
1

 Very satisfied

2

 Satisfied

3

 Somewhat satisfied

4

 Not satisfied

44. Has your child’s main health insurance plan changed in the last 6 months?
1

 Yes (if yes, go to question 44a)

2

 No (if no, go to question 45)

 Don’t know
4 Don’t want to answer
3

44a. What were the reasons your child’s health insurance plan changed? (check all that apply)
1

 Employer stopped offering this plan

1

 Doctor left this plan

1

 Unhappy with benefits/coverage

1

 Too difficult to get care

1

 Moved

1

 Change in jobs

1

 Other

1

 Don’t know

1

 Don’t want to answer

(specify)

45. Has your child’s main diabetes provider changed in the last six months?
1

 Yes (if yes, go to question 45a)

2

 No (if no, go to question 46)

3

 Don’t know

4

 Don’t want to answer

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What were the reasons your child had a change in diabetes provider? (check all that apply)

45a.

1

 No longer covered by health plan

 Too difficult to get care
1 Not satisfied with care
1 Moved
1 Other (specify)
1

1

 Don’t know

1

 Don’t want to answer

 These questions deal with education and household income. Please remember that your
answers are confidential.
46. What is the highest degree or level of school you have COMPLETED?

 No schooling completed
th
2 Nursery school to 4 grade
th
th
3 5 grade or 6 grade
th
th
4 7 grade or 8 grade
th
5 9 grade
th
6 10 grade
th
7 11 grade
th
8 12 grade, NO DIPLOMA
9 High school graduate (high school diploma) or equivalent (for example: GED)
10 Business/technical school
11 Some college credit but less than 1 year
12 1 or more years of college, no degree
13 Associate degree (for example: AA, AS) (2-year)
14 Bachelor’s degree (for example: BA, AB, BS) (4-year)
15 Master’s degree (for example: MA, MS, MEng, MEd, MSW)
1

 Professional or doctorate degree (for example: MD, DDS, JD, PhD, EdD)
17 Don’t know
16

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47. What is the highest degree or level of school your current spouse/partner has COMPLETED?
1

 No schooling completed

2

 Nursery school to 4th grade

3

 5th grade or 6th grade

4

 7th grade or 8th grade

5

 9th grade

6

 10th grade

7

 11th grade

8

 12th grade, NO DIPLOMA

9

 High school graduate (high school diploma) or equivalent (for example: GED)

10

 Business/technical school

11

 Some college credit but less than 1 year

12

 1 or more years of college, no degree

13

 Associate degree (for example: AA, AS) (2-year)

14

 Bachelor’s degree (for example: BA, AB, BS) (4-year)

15

 Master’s degree (for example:

16

 Professional or doctorate degree (for example: MD, DDS, JD, PhD, EdD)

17

 Don’t know

18

 Not applicable (no current spouse/partner)

MA, MS, MEng, MEd, MSW)

48. Which of these categories best describes the total income of all persons living in your household for the
past 12 months? (Check only one category.)
1

 Less than $5,000

6

 $35,000 through $49,999

2

 $5,000 through $11,999

7

 $50,000 through $74,999

3

 $12,000 through $15,999

8

 $75,000 through $99,999

4

 $16,000 through $24,999

9

 $100,000 and greater

5

 $25,000 through $34,999

10

 Don’t know

11

 Prefer not to answer

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49. How many people live in your child’s main household (including the child and all parents/guardians)?
49a. Total number of people
49b. Number of children (less
than 18)
49c. Number of adults
49c(1). Of the number of adults, how many bring income into the household?
50. Is your child participating in another research study?
1

 Yes

2

 No

50a. If yes, what study?

 As a part of the study, we will be contacting you in the future. It would be helpful to us if
you could provide us with the names, addresses, and phone numbers of two people who
could contact you even if you move.

Name

Relationship

Address:

P.O. Box

City

Street

Apt. #

State

Zip Code

Email Address

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Phone # (best)

(
(area code)

ext.

(area code)

ext.

(area code)

ext.

Phone # (other)

Phone # (other)

Name

Relationship

Address:

P.O. Box

Street

City

Apt. #

State

Zip Code

Email Address
Phone # (best)

(
(area code)

ext.

(area code)

ext.

(area code)

ext.

Phone # (other)

Phone # (other)

Thank you for completing this questionnaire.

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FOR STUDY USE ONLY
Date Completed

Completed by
Month

Day

Year

Reviewer Code

Date Reviewed
Month

Day

Year

Date Entered

Data Entry Code
Month

Day

Year

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File Typeapplication/pdf
File TitleMicrosoft Word - Cohort S3_Health Questionnaire - Parent version_ revised 12-09-10 gray box revised 12-13-11
Authorstmoxley
File Modified2011-12-13
File Created2011-12-13

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