Item
1. Do you have one or more persons you think of as this child’s personal doctor or nurse?
text
C0031198 (UMLS CUI [1,1])
C0018724 (UMLS CUI [1,2])
Code List
1. Do you have one or more persons you think of as this child’s personal doctor or nurse?
CL Item
Yes, one person (1)
CL Item
Yes, more than one person (2)
Item
2. DURING THE PAST 12 MONTHS, did this child need a referral to see any doctors or receive any services?
text
C0034927 (UMLS CUI [1,1])
C0018747 (UMLS CUI [1,2])
Code List
2. DURING THE PAST 12 MONTHS, did this child need a referral to see any doctors or receive any services?
CL Item
No ➔ SKIP to question D4 (2)
Item
3. If yes, how much of a problem was it to get referrals?
text
C0332218 (UMLS CUI [1,1])
C0034927 (UMLS CUI [1,2])
C0018747 (UMLS CUI [1,3])
Code List
3. If yes, how much of a problem was it to get referrals?
CL Item
Small problem (2)
CL Item
Not a problem (3)
Item
4a. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Spend enough time with this child?
text
C0018724 (UMLS CUI [1])
C3668983 (UMLS CUI [2])
Code List
4a. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Spend enough time with this child?
Item
4b. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Listen carefully to you?
text
C0018724 (UMLS CUI [1])
C0004268 (UMLS CUI [2])
Code List
4b. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Listen carefully to you?
Item
4c. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Show sensitivity to your family’s values and customs?
text
C0018724 (UMLS CUI [1])
C0312418 (UMLS CUI [2])
Code List
4c. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Show sensitivity to your family’s values and customs?
Item
4d. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Provide the specific information you needed concerning this child?
text
C0018724 (UMLS CUI [1])
C0514892 (UMLS CUI [2])
Code List
4d. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Provide the specific information you needed concerning this child?
Item
4e. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Help you feel like a partner in this child’s care?
text
C0018724 (UMLS CUI [1])
C3887537 (UMLS CUI [2])
Code List
4e. DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Help you feel like a partner in this child’s care?
questions health service
Item
5. DURING THE PAST 12 MONTHS, were any decisions needed about this child’s health care services or treatment, such as whether to start or stop a prescription or therapy services, get a referral to a specialist, or have a medical procedure?
boolean
C1522634 (UMLS CUI [1,1])
C0018747 (UMLS CUI [1,2])
Item
6a. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Discuss with you the range of options to consider for his or her health care or treatment?
text
C0018724 (UMLS CUI [1])
C0510365 (UMLS CUI [2])
Code List
6a. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Discuss with you the range of options to consider for his or her health care or treatment?
Item
6b. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Make it easy for you to raise concerns or disagree with recommendations for this child’s health care?
text
C0018724 (UMLS CUI [1])
C0510365 (UMLS CUI [2,1])
C3641828 (UMLS CUI [2,2])
Code List
6b. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: Make it easy for you to raise concerns or disagree with recommendations for this child’s health care?
Item
6c. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: work with you to decide together which health care and treatment choices would be best for this child?
text
C0018724 (UMLS CUI [1])
C0510365 (UMLS CUI [2,1])
C3641827 (UMLS CUI [2,2])
Code List
6c. If yes, DURING THE PAST 12 MONTHS, how often did this child’s doctors or other health care providers: work with you to decide together which health care and treatment choices would be best for this child?
Item
7. Does anyone help you arrange or coordinate this child's care among the different doctors or services that this child uses?
text
C0018747 (UMLS CUI [1,1])
C0700114 (UMLS CUI [1,2])
Code List
7. Does anyone help you arrange or coordinate this child's care among the different doctors or services that this child uses?
CL Item
Did not see more than one health care provider in PAST 12 MONTHS ➔ SKIP to question D11 (3)
health services Coordinated Assisting with activity
Item
8. DURING THE PAST 12 MONTHS, have you felt that you could have used extra help arranging or coordinating this child’s care among the different health care providers or services?
boolean
C0018747 (UMLS CUI [1,1])
C0700114 (UMLS CUI [1,2])
C0557036 (UMLS CUI [1,3])
Item
9. If yes, DURING THE PAST 12 MONTHS, how often did you get as much help as you wanted with arranging or coordinating this child’s health care?
text
C0439603 (UMLS CUI [1,1])
C0018747 (UMLS CUI [1,2])
C0700114 (UMLS CUI [1,3])
C0557036 (UMLS CUI [1,4])
Code List
9. If yes, DURING THE PAST 12 MONTHS, how often did you get as much help as you wanted with arranging or coordinating this child’s health care?
Item
10. Overall, how satisfied are you with the communication among this child’s doctors and other health care providers?
text
C0242428 (UMLS CUI [1,1])
C0018724 (UMLS CUI [1,2])
C0009452 (UMLS CUI [1,3])
Code List
10. Overall, how satisfied are you with the communication among this child’s doctors and other health care providers?
CL Item
Very satisfied (1)
CL Item
Somewhat satisfied (2)
CL Item
Somewhat dissatisfied (3)
CL Item
Very dissatisfied (4)
Item
11. DURING THE PAST 12 MONTHS, did this child’s health care provider communicate with the child’s school, child care provider, or special education program?
text
C0018724 (UMLS CUI [1,1])
C0566001 (UMLS CUI [1,2])
C0036375 (UMLS CUI [1,3])
C0031831 (UMLS CUI [1,4])
C1161268 (UMLS CUI [1,5])
Code List
11. DURING THE PAST 12 MONTHS, did this child’s health care provider communicate with the child’s school, child care provider, or special education program?
CL Item
No ➔ SKIP to question D13 (2)
CL Item
Did not need health care (3)
CL Item
provider to communicate (provider to communicate)
CL Item
with these providers ➔ SKIP to question D13 (with these providers ➔ SKIP to question D13)
Item
12. If yes, overall, how satisfied are you with the health care provider’s communication with the school, child care provider, or special education program?
text
C0242428 (UMLS CUI [1,1])
C0018724 (UMLS CUI [1,2])
C0566001 (UMLS CUI [1,3])
C0036375 (UMLS CUI [1,4])
C0031831 (UMLS CUI [1,5])
C1161268 (UMLS CUI [1,6])
Code List
12. If yes, overall, how satisfied are you with the health care provider’s communication with the school, child care provider, or special education program?
CL Item
Very satisfied (1)
CL Item
Somewhat satisfied (2)
CL Item
Somewhat dissatisfied (3)
CL Item
Very dissatisfied (4)
pediatric
Item
13. Do any of this child’s doctors or other health care providers treat only children?
boolean
C1521725 (UMLS CUI [1])
physician
Item
14. If yes, have they talked with you about having this child eventually see doctors or other health care providers who treat adults?
boolean
C0031831 (UMLS CUI [1])
Item
15a. Has this child’s doctor or other health care provider actively worked with this child to: Think about and plan for his or her future.
text
C1821188 (UMLS CUI [1])
Code List
15a. Has this child’s doctor or other health care provider actively worked with this child to: Think about and plan for his or her future.
Item
15b. Has this child’s doctor or other health care provider actively worked with this child to: Make positive choices about his or her health
text
C0679786 (UMLS CUI [1])
Code List
15b. Has this child’s doctor or other health care provider actively worked with this child to: Make positive choices about his or her health
Item
15c. Has this child’s doctor or other health care provider actively worked with this child to: Gain skills to manage his or her health and health care.
text
C0580166 (UMLS CUI [1])
Code List
15c. Has this child’s doctor or other health care provider actively worked with this child to: Gain skills to manage his or her health and health care.
Item
15d. Has this child’s doctor or other health care provider actively worked with this child to: Understand the changes in health care that happen at age 18.
text
C1736025 (UMLS CUI [1])
Code List
15d. Has this child’s doctor or other health care provider actively worked with this child to: Understand the changes in health care that happen at age 18.
written care plan
Item
16. Have this child’s doctors or other health care providers worked with you and this child to create a written plan to meet his or her health goals and needs?
boolean
C2922723 (UMLS CUI [1])
health care goal
Item
17. If yes, does this plan identify specific health goals for this child and any health needs or problems this child may have and how to get these needs met?
boolean
C0679685 (UMLS CUI [1])
copy of the written plan of care
Item
18. Did you and this child receive a written copy of this plan of care?
boolean
C0514586 (UMLS CUI [1])
copy of the written plan of care
Item
19. Is this plan CURRENTLY up-to-date for this child?
boolean
C0514586 (UMLS CUI [1])
Entitlement to benefit status health insurance
Item
20. Eligibility for health insurance often changes in young adulthood. Do you know how this child will be insured as he or she becomes an adult?
boolean
C0587172 (UMLS CUI [1,1])
C0021682 (UMLS CUI [1,2])
health insurance coverage
Item
21. If no, has anyone discussed with you how to obtain or keep some type of health insurance coverage as this child becomes an adult?
boolean
C2029812 (UMLS CUI [1])