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SECTION 9: Impact on the Family

14 forms  
SECTION 9: Impact on the Family
Description

SECTION 9: Impact on the Family

The next question is about the amount of money paid (during the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] since (his/her) birth) for (S.C.)’s medical care. Please do not include health insurance premiums or costs that were or will be reimbursed by insurance or another source. But do include out-of-pocket payments for all types of health-related needs such as co-payments, dental or vision care, medications, special foods, adaptive clothing, durable equipment, home modifications, and any kind of therapy. (During the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] Since (his/her) birth), would you say that the family paid more than $500, $250-$500, less than $250, or nothing for (S.C.)’s medical care?
Description

HELP SCREEN: RESPONDENT MAY GIVE A RANGE AS AN ANSWER TO THIS QUESTION. BE PREPARED TO PROBE FOR A MORE ACCURATE ANSWER

Data type

integer

Alias
UMLS CUI [1]
C0085552
(During the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] Since (his/her) birth), would you say that the family paid more than $5000, $1000 to $5000, or less than $1000 for (S.C.)’s medical care?
Description

NOTE: Asked for children paying more than $500 for medical care

Data type

integer

Alias
UMLS CUI [1]
C0085552
Many families provide health care at home such as changing bandages, care of feeding or breathing equipment, and giving medication and therapies. Do you or other family members provide health care at home for (S.C.)?
Description

READ IF NECESSARY: Please base your answer on the last several weeks. READ IF NECESSARY: Only inlcude care related to the child's condition.

Data type

integer

Alias
UMLS CUI [1,1]
C0204977
How many hours per week do you or other family members spend providing this kind of care?
Description

NOTE: Asked only for children whose family members provide health care at home READ IF NECESSARY: It is fine to provide an average number of hours per week based on several weeks. Please give your best estimate. READ IF NECESSARY: Only include care related to the child’s condition.

Data type

integer

Measurement units
  • HOURS PER WEEK
Alias
UMLS CUI [1,1]
C0204977
UMLS CUI [1,2]
C0556976
HOURS PER WEEK
How many hours per week do you or other family members spend providing this kind of care?
Description

NOTE: Asked only for children whose family members provide health care at home READ IF NECESSARY: It is fine to provide an average number of hours per week based on several weeks. Please give your best estimate. READ IF NECESSARY: Only include care related to the child’s condition.

Data type

integer

Alias
UMLS CUI [1,1]
C0204977
UMLS CUI [1,2]
C0556976
How many hours per week do you or other family members spend arranging or coordinating (S.C.)’s care? By this I mean making appointments, making sure that care providers are exchanging information, and following up on (S.C.)’s care needs.
Description

[IF C9Q04 < 30 or C9Q04 = 168, 995, 996, 997, SKIP TO C9Q05] READ IF NECESSARY: It is fine to provide an average number of hours per week based on several weeks. Please give your best estimate.

Data type

text

Measurement units
  • HOURS PER WEEK
Alias
UMLS CUI [1,1]
C1739530
UMLS CUI [1,2]
C0556976
HOURS PER WEEK
How many hours per week do you or other family members spend arranging or coordinating (S.C.)’s care? By this I mean making appointments, making sure that care providers are exchanging information, and following up on (S.C.)’s care needs.
Description

[IF C9Q04 < 30 or C9Q04 = 168, 995, 996, 997, SKIP TO C9Q05] READ IF NECESSARY: It is fine to provide an average number of hours per week based on several weeks. Please give your best estimate.

Data type

integer

Alias
UMLS CUI [1,1]
C1739530
UMLS CUI [1,2]
C0556976
Have (S.C.)’s health conditions caused financial problems for your family?
Description

C9Q05

Data type

integer

Alias
UMLS CUI [1,1]
C0348080
UMLS CUI [1,2]
C0015127
UMLS CUI [1,3]
C0549106
Have you or other family members stopped working because of (S.C.)’s health conditions?
Description

C9Q10

Data type

integer

Alias
UMLS CUI [1,1]
C0348080
UMLS CUI [1,2]
C0015127
UMLS CUI [1,3]
C0425082
Have you or other family members cut down on the hours you work because of (S.C.)’s health conditions?
Description

(IF C9Q10 = 1, THEN SHOW: Not including the family members who stopped working,)

Data type

integer

Alias
UMLS CUI [1,1]
C0348080
UMLS CUI [1,2]
C0015127
UMLS CUI [1,3]
C3899484
Have you or other family members avoided changing jobs because of concerns about maintaining health insurance for (S.C.)?
Description

C9Q11

Data type

integer

Alias
UMLS CUI [1,1]
C0348080
UMLS CUI [1,2]
C0015127
UMLS CUI [1,3]
C1261323
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Similar models

SECTION 9: Impact on the Family

14 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
SECTION 9: Impact on the Family
C9Q01
Item
The next question is about the amount of money paid (during the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] since (his/her) birth) for (S.C.)’s medical care. Please do not include health insurance premiums or costs that were or will be reimbursed by insurance or another source. But do include out-of-pocket payments for all types of health-related needs such as co-payments, dental or vision care, medications, special foods, adaptive clothing, durable equipment, home modifications, and any kind of therapy. (During the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] Since (his/her) birth), would you say that the family paid more than $500, $250-$500, less than $250, or nothing for (S.C.)’s medical care?
integer
C0085552 (UMLS CUI [1])
C9Q01_A
Item
(During the past 12 months/ [WHEN S.C. IS YOUNGER THAN 12 MONTHS] Since (his/her) birth), would you say that the family paid more than $5000, $1000 to $5000, or less than $1000 for (S.C.)’s medical care?
integer
C0085552 (UMLS CUI [1])
C9Q02
Item
Many families provide health care at home such as changing bandages, care of feeding or breathing equipment, and giving medication and therapies. Do you or other family members provide health care at home for (S.C.)?
integer
C0204977 (UMLS CUI [1,1])
C9Q03
Item
How many hours per week do you or other family members spend providing this kind of care?
integer
C0204977 (UMLS CUI [1,1])
C0556976 (UMLS CUI [1,2])
C9Q03A
Item
How many hours per week do you or other family members spend providing this kind of care?
integer
C0204977 (UMLS CUI [1,1])
C0556976 (UMLS CUI [1,2])
C9Q04
Item
How many hours per week do you or other family members spend arranging or coordinating (S.C.)’s care? By this I mean making appointments, making sure that care providers are exchanging information, and following up on (S.C.)’s care needs.
text
C1739530 (UMLS CUI [1,1])
C0556976 (UMLS CUI [1,2])
C9Q04
Item
How many hours per week do you or other family members spend arranging or coordinating (S.C.)’s care? By this I mean making appointments, making sure that care providers are exchanging information, and following up on (S.C.)’s care needs.
integer
C1739530 (UMLS CUI [1,1])
C0556976 (UMLS CUI [1,2])
C9Q05
Item
Have (S.C.)’s health conditions caused financial problems for your family?
integer
C0348080 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
C0549106 (UMLS CUI [1,3])
C9Q10
Item
Have you or other family members stopped working because of (S.C.)’s health conditions?
integer
C0348080 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
C0425082 (UMLS CUI [1,3])
C9Q06
Item
Have you or other family members cut down on the hours you work because of (S.C.)’s health conditions?
integer
C0348080 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
C3899484 (UMLS CUI [1,3])
C9Q11
Item
Have you or other family members avoided changing jobs because of concerns about maintaining health insurance for (S.C.)?
integer
C0348080 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
C1261323 (UMLS CUI [1,3])
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