Table of Contents

Locator Record

Title: Hepatitis C Follow Up (HCQ_C )
Contact Number: 1-866-441-NCHS
Years of Content: 2003 - 2004
First Published: September, 2006
Revised: April, 2008
Access Constraints: None
Use Constraints: None
Geographic Coverage: National
Subject:Hepatitis C Follow Up Questionnaire administered to survey participants who test positive for hepatitis C.
Record Source: NHANES 2003 - 2004
Survey Methodology: NHANES 2003 - 2004 is a stratified multistage probability sample of the civilian non-institutionalized population of the U.S.
Medium: NHANES Web site; SAS transport files

Component Description

Participants 6 years and older testing positive for antibody to hepatitis C virus (anti-HCV) (LBXHC) are sent a report of findings (ROF) letter informing them of their HCV test result and encouraging them to follow-up with a health care provider to determine if any other tests or procedures are needed. The follow-up phone questionnaire occurs 6 months after their examination (approximately 4-5 months after the ROF letter was mailed). The purpose of the questions is to assess what proportion of NHANES participants testing positive for infection with hepatitis C virus (HCV) already knew of their infection status, what they know about hepatitis C, and what actions they take after becoming aware of their infection status.

The HCV follow-up questionnaire is mentioned in the informed consent and also in the reporting letter for positive HCV letters. Trained interviewers contacted those participants with positive HCV results by telephone for an interview.

An automated system for managing calls (i.e., setting up appointments, tracking the calls to contact the participant, and reasons for refusal) is maintained in the Field Follow up Management System (FFMS). Responses to interview questions are keyed directly into the FFMS, a web based application of the Integrated Survey Information System (ISIS) software used for other NHANES components.

Participants who live in households with no telephones were sent a letter asking them to call a toll free number to answer a few questions about their Hepatitis C results.

Eligible Sample

Participants age 6 years and older testing positive for hepatitis C virus (anti-HCV) were eligible to participate. Parents or guardians are interviewed for participants with hepatitis C who are under the age of 18 years or adults who cannot respond for themselves.

Exclusion Criteria: Circumstances when communication or cognitive difficulties make it impossible for the participant to respond to questionnaire and a parent or guardian is not available to complete the interview would result in exclusion.

Interview Setting and Mode of Administration

Bilingual (English and Spanish) trained interviewers contacted participants with positive hepatitis C results by telephone to request an interview. Call attempts were scheduled 6 months after the date of examination, approximately 4-5 months after participants receive the results notification letter. In order to determine what actions persons take with the information that they are infected, it is necessary to allow time to have initiated or implemented such actions after notification of infection. Therefore, the telephone interview occurs at least a few months after notification.

Quality Assurance & Quality Control

The hepatitis C follow-up questions were evaluated in NCHS’s Questionnaire Design Research Laboratory before the final questionnaire was approved by the NHANES IRB.

Analytic Notes

Combination of these data with other cycles is recommended when doing analysis. These data should not be used with sample weights to make national estimates due to small eligible sample size and low response rates.

The data should be linked to the laboratory data (Lab 02, LBXHC) by sequence number.
Two questions (HCQ.121 and HCQ.126) were added to the 2003-2004 follow up questionnaire to ask about awareness of medications available to treat hepatitis C and when told no treatment is needed, to learn about the reason the doctor said they should not be treated. One question was re-numbered (from HCQ.120 to HCQ.124) and re-ordered. The researcher should be aware of the change in skip patterns resulting from these changes.

Examples of reasons for non-response coded as “communication problem or cognitive impairment” may include hearing impairment, poor memory recall, and language barrier.

References

Codebook and Frequencies

SEQN - Respondent sequence number

Variable Name:
SEQN
SAS Label:
Respondent sequence number
English Text:
Respondent sequence number.
Target:
Both males and females 6 YEARS - 150 YEARS

HCASCST1 - Interview Status Code

Variable Name:
HCASCST1
SAS Label:
Interview Status Code
English Text:
Interview Status Code
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Complete 44 44 HCQ020
2 Partial 2 46 HCQ020
3 Not done 41 87
. Missing 0 87

HCASCCT1 - Reasons for Not Done

Variable Name:
HCASCCT1
SAS Label:
Reasons for Not Done
English Text:
Reasons the Interview was not done
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Unable to contact SP 37 37 End of Section
2 Refusal 1 38 End of Section
3 Communication problem or cognitive impairment 1 39 End of Section
4 SP expired 1 40 End of Section
5 Did not receive letter 1 41 End of Section
6 Other 0 41 End of Section
. Missing 46 87

HCQ020 - Heard of Hepatitis C prior to letter?

Variable Name:
HCQ020
SAS Label:
Heard of Hepatitis C prior to letter?
English Text:
There are many types of hepatitis. Before receiving the letter with (your/SP's) test result, had you heard of hepatitis C?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 41 41
2 No 3 44
3 Heard of hepatitis, but not specifically hepatitis C 1 45
7 Refused 0 45
9 Don't know 0 45
. Missing 42 87

HCQ030 - First time told had Hepatitis C?

Variable Name:
HCQ030
SAS Label:
First time told had Hepatitis C?
English Text:
Was the test result in our letter the first time you were told (you had/SP has) hepatitis C?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 20 20 HCQ070
2 No 25 45
7 Refused 0 45 HCQ070
9 Don't know 0 45 HCQ070
. Missing 42 87

HCQ040 - How long known infected?

Variable Name:
HCQ040
SAS Label:
How long known infected?
English Text:
For about how long have you known that (you have/SP has) hepatitis C? Would you say ...
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 One year 4 4
2 2 to 5 years 9 13
3 More than 5 years 11 24
7 Refused 0 24
9 Don't know 1 25
. Missing 62 87

HCQ060 - Reason first tested for Hepatitis C?

Variable Name:
HCQ060
SAS Label:
Reason first tested for Hepatitis C?
English Text:
Why were you first tested for hepatitis C? Was it because:
Target:
Both males and females 16 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 You donated blood? 3 3
2 You had other blood tests done for a routine physical that showed you might have liver disease? 12 15
3 You were sick with symptoms like fatigue, nausea, stomach pain, yellowing of the eyes or skin (known as jaundice)? 2 17
4 You were exposed to blood while on the job? 0 17
5 You or your doctor thought you were at risk of having hepatitis C? 1 18
6 You had another reason? 6 24
7 Refused 0 24
9 Don't know 1 25
. Missing 62 87

HCQ070 - Seen a doctor about test result?

Variable Name:
HCQ070
SAS Label:
Seen a doctor about test result?
English Text:
Did (you/SP) see a doctor or other health professional about (your/his/her) hepatitis C test result?
English Instructions:
Now I'm going to ask you some questions about what you have done (with SP) since finding out that (you have/your child has) hepatitis C. INTERVIEWER: If tested before NHANES, question refers to first test; otherwise refers to NHANES test.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 30 30 HCQ090
2 No 15 45
7 Refused 0 45
9 Don't know 0 45
. Missing 42 87

HCQ080 - Have a doctor's appointment?

Variable Name:
HCQ080
SAS Label:
Have a doctor's appointment?
English Text:
(Do you/Does SP) have an appointment to see a doctor or other health care professional about (your/his/her) hepatitis C test result?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1 HCQ160
2 No 14 15 HCQ160
7 Refused 0 15 HCQ160
9 Don't know 0 15 HCQ160
. Missing 72 87

HCQ090 - Did doctor do additional tests?

Variable Name:
HCQ090
SAS Label:
Did doctor do additional tests?
English Text:
When (you/SP) saw a doctor or other health professional about (your/his/her) hepatitis C test results, did (you/he/she) have other blood tests to check how (your/his/her) liver is working?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 24 24
2 No 4 28
7 Refused 0 28
9 Don't know 2 30
. Missing 57 87

HCQ100 - What doctor told about test result?

Variable Name:
HCQ100
SAS Label:
What doctor told about test result?
English Text:
Which of the following statements describes most closely what (your/SP's) doctor told you about (your/his/her) hepatitis C result?
English Instructions:
Read each statement and check only one.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 (You have/He/She has) hepatitis C and need(s) regular medical follow-up. 14 14
2 You/He/She) tested positive for hepatitis C, but (do/does) not need to do anything or worry about it. 8 22 HCQ160
3 (You/He/she) really (don't/doesn't) have hepatitis C because a follow-up test showed that the positive test result was in error. 3 25 End of Section
4 Other 2 27
7 Refused 1 28
9 Don't know 1 29
. Missing 58 87

HCQ110 - Ever had a liver biopsy?

Variable Name:
HCQ110
SAS Label:
Ever had a liver biopsy?
English Text:
Did (you/SP) have a liver biopsy (procedure to get a small piece of (your/his/her) liver through a needle)?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 7 7
2 No 9 16
7 Refused 0 16
9 Don't know 2 18
. Missing 69 87

HCQ121 - Doctor advised about medications?

Variable Name:
HCQ121
SAS Label:
Doctor advised about medications?
English Text:
Did (your/SP's) doctor or health care professional tell you that there are medicines that can be used to treat hepatitis C?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 14 14
2 No 2 16 HCQ150
7 Refused 0 16 HCQ150
9 Don't know 2 18 HCQ150
. Missing 69 87

HCQ124 - Doctor advised you should be treated?

Variable Name:
HCQ124
SAS Label:
Doctor advised you should be treated?
English Text:
Did (your/SP's) doctor or health care professional tell you that your hepatitis C should be treated with medication such as Interferon and Ribavirin?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 8 8 HCQ130
2 No 3 11
7 Refused 0 11 HCQ150
9 Don't know 3 14 HCQ150
. Missing 73 87

HCQ126A - Not treated: liver enzymes were normal?

Variable Name:
HCQ126A
SAS Label:
Not treated: liver enzymes were normal?
English Text:
What reason did your doctor or health care professional give you when he/she told you that you should not be treated? Was it because your liver enzymes were normal?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1
2 No 2 3
7 Refused 0 3
9 Don't know 0 3
. Missing 84 87

HCQ126B - Not treated: did not have liver disease?

Variable Name:
HCQ126B
SAS Label:
Not treated: did not have liver disease?
English Text:
What reason did your doctor or health care professional give you when he/she told you that you should not be treated? Was it because you did not have liver disease?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1
2 No 2 3
7 Refused 0 3
9 Don't know 0 3
. Missing 84 87

HCQ126C - Not treated: not need to do anything?

Variable Name:
HCQ126C
SAS Label:
Not treated: not need to do anything?
English Text:
What reason did your doctor or health care professional give you when he/she told you that you should not be treated? Was it because you do not need to do anything for hepatitis C?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 0 0
2 No 3 3
7 Refused 0 3
9 Don't know 0 3
. Missing 84 87

HCQ126D - Not treated: can be treated later?

Variable Name:
HCQ126D
SAS Label:
Not treated: can be treated later?
English Text:
What reason did your doctor or health care professional give you when he/she told you that you should not be treated? Was it because you can wait to be treated at a later time?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 0 0
2 No 2 2
7 Refused 0 2
9 Don't know 1 3
. Missing 84 87

HCQ126E - Not treated: no reason given

Variable Name:
HCQ126E
SAS Label:
Not treated: no reason given
English Text:
What reason did your doctor or health care professional give you when he/she told you that you should not be treated? Was it because... No reason specified.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 0 0
2 No 3 3
7 Refused 0 3
9 Don't know 0 3
. Missing 84 87

HCQ130 - Treated with these medicines?

Variable Name:
HCQ130
SAS Label:
Treated with these medicines?
English Text:
Did (you/SP) get treated with these medicines?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 4 4 HCQ150
2 No 7 11
7 Refused 0 11 HCQ150
9 Don't know 0 11 HCQ150
. Missing 76 87

HCQ140A - Not treated: unpleasant side effects

Variable Name:
HCQ140A
SAS Label:
Not treated: unpleasant side effects
English Text:
Why did (you/SP) not get treated? Was it because the side effects to the treatment are unpleasant?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1
2 No 5 6
7 Refused 1 7
9 Don't know 0 7
. Missing 80 87

HCQ140B - Not treated: treatment self injected

Variable Name:
HCQ140B
SAS Label:
Not treated: treatment self injected
English Text:
Why did (you/SP) not get treated? Was it because the treatment shots must be self injected?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1
2 No 5 6
7 Refused 1 7
9 Don't know 0 7
. Missing 80 87

HCQ140C - Not treated: treatment too expensive

Variable Name:
HCQ140C
SAS Label:
Not treated: treatment too expensive
English Text:
Why did (you/SP) not get treated? Was it because the treatment is too expensive?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 1 1
2 No 5 6
7 Refused 1 7
9 Don't know 0 7
. Missing 80 87

HCQ140D - Not treated:waiting for better treatment

Variable Name:
HCQ140D
SAS Label:
Not treated:waiting for better treatment
English Text:
Why did (you/SP) not get treated? Was it because there is a hope of better treatment in the future?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 0 0
2 No 5 5
7 Refused 1 6
9 Don't know 1 7
. Missing 80 87

HCQ140E - Not treated: some other reason

Variable Name:
HCQ140E
SAS Label:
Not treated: some other reason
English Text:
Why did (you/SP) not get treated? Was it because there is some other reason?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 4 4
2 No 2 6
7 Refused 1 7
9 Don't know 0 7
. Missing 80 87

HCQ150 - Did doctor limit alcohol?

Variable Name:
HCQ150
SAS Label:
Did doctor limit alcohol?
English Text:
Did (your/SP's) doctor or health professional tell (you/him/her) to avoid or limit alcoholic beverages (in the future) because of (your/his/her) hepatitis C?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 Yes 10 10
2 No 6 16
7 Refused 0 16
9 Don't know 2 18
. Missing 69 87

HCQ160 - T/F: infection is permanent

Variable Name:
HCQ160
SAS Label:
T/F: infection is permanent
English Text:
If someone is infected with hepatitus C virus, they will most likely carry the virus all their lives.
English Instructions:
We would like to know what you have learned about hepatitis C. Please tell me if you believe the following statements are true or false, or if you don't know whether they are true or false.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 28 28
2 False 4 32
7 Refused 0 32
9 Don't know 8 40
. Missing 47 87

HCQ170 - T/F: HepC stops liver

Variable Name:
HCQ170
SAS Label:
T/F: HepC stops liver
English Text:
Infection with the hepatitis C virus can cause the liver to stop working.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 32 32
2 False 1 33
7 Refused 1 34
9 Don't know 6 40
. Missing 47 87

HCQ180 - T/F: look and feel fine

Variable Name:
HCQ180
SAS Label:
T/F: look and feel fine
English Text:
Someone with hepatitis C can look and feel fine.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 35 35
2 False 1 36
7 Refused 1 37
9 Don't know 3 40
. Missing 47 87

HCQ190 - T/F: HepC from blood transfusion

Variable Name:
HCQ190
SAS Label:
T/F: HepC from blood transfusion
English Text:
You can get hepatitis C by getting a blood transfusion from an infected donor.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 37 37
2 False 1 38
7 Refused 1 39
9 Don't know 1 40
. Missing 47 87

HCQ200 - T/F: HepC from shaking hands

Variable Name:
HCQ200
SAS Label:
T/F: HepC from shaking hands
English Text:
You can get hepatitis C by shaking hands with someone who has hepatitis C.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 3 3
2 False 33 36
7 Refused 1 37
9 Don't know 3 40
. Missing 47 87

HCQ210 - T/F: HepC by kissing infected person

Variable Name:
HCQ210
SAS Label:
T/F: HepC by kissing infected person
English Text:
You can get hepatitis C by kissing someone who has hepatitis C.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 5 5
2 False 26 31
7 Refused 1 32
9 Don't know 8 40
. Missing 47 87

HCQ220 - T/F: HepC from infected sex partner

Variable Name:
HCQ220
SAS Label:
T/F: HepC from infected sex partner
English Text:
You can get hepatitis C by having sex with someone who has hepatitis C
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 21 21
2 False 9 30
7 Refused 1 31
9 Don't know 9 40
. Missing 47 87

HCQ230 - T/F: HepC from birth, infected mother

Variable Name:
HCQ230
SAS Label:
T/F: HepC from birth, infected mother
English Text:
You can get hepatitis C by being born to a woman who had hepatitis C when she gave birth.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 21 21
2 False 3 24
7 Refused 1 25
9 Don't know 15 40
. Missing 47 87

HCQ240 - T/F: HepC from sharp instrument

Variable Name:
HCQ240
SAS Label:
T/F: HepC from sharp instrument
English Text:
You can get hepatitis C by being stuck with a needle or sharp instrument that has hepatitis C infected blood on it.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 35 35
2 False 1 36
7 Refused 1 37
9 Don't know 3 40
. Missing 47 87

HCQ250 - T/F: HepC from coworkers

Variable Name:
HCQ250
SAS Label:
T/F: HepC from coworkers
English Text:
You can get hepatitis C by working with someone who has hepatitis C.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 5 5
2 False 23 28
7 Refused 1 29
9 Don't know 11 40
. Missing 47 87

HCQ260 - T/F: HepC from injecting drugs

Variable Name:
HCQ260
SAS Label:
T/F: HepC from injecting drugs
English Text:
You can get hepatitis C by injecting illegal drugs, even if only a few times.
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 True 36 36
2 False 1 37
7 Refused 1 38
9 Don't know 2 40
. Missing 47 87

HCQ270 - Main respondent

Variable Name:
HCQ270
SAS Label:
Main respondent
English Text:
Who was the main respondent for the questionnaire?
Target:
Both males and females 6 YEARS - 150 YEARS
Code or Value Value Description Count Cumulative Skip to Item
1 SP 38 38
2 Parent/guardian 2 40
3 SP and Parent/guardian 0 40
. Missing 47 87