Persons interviewed with short and Proxy interview

Attachment 2c

Proxy Questionnaire for Medical Monitoring Project (MMP)

Proxy Questionnaire for

Medical Monitoring Project (MMP)

VERSION 1

Public reporting burden of this collection of information is estimated to average 20 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the 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, Project Clearance Officer, 1600 Clifton Road, MS D-74, Atlanta, GA 30333, ATTN: PRA (0920-0011). Do not send the completed form to this address.

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

P

ublic Health Service

Centers for Disease Control and Prevention

Atlanta, GA 30333

2007 MMP Proxy Questionnaire

Participant ID: ___ ___ ___ ___ ___ ___ ___ ___ ___ ___ ___ __

Site ID Facility ID Respondent ID

Interviewer ID: ___ ___ ___

Population Definition Period (PDP) START date: (__ __/ __ __ / __ __ __ __ )

^{(M M / D D / Y Y Y Y )}

Population Definition Period (PDP) END date: (__ __/ __ __ / __ __ __ __ )

^{(M M / D D / Y Y Y Y )}

Interview date: (__ __/ __ __ / __ __ __ __ )

^{(M M / D D / Y Y Y Y )}

Interview language: □ 1 English □ 2 Spanish

□ 3 Other (Specify_________________)

T

Note to Reviewer: The QDS version of this interview will be programmed to determine the age of the participant based on the Patient Definition Period Start Date. As described in the protocol, all participants must have been 18 years of age or older on the date written in this area.

ime questionnaire began:  __ __:__ __  □ AM    □ PM

Hour Minute

SAY: “I'd like to thank you for taking part in this survey. Remember that all the information you give me will be confidential. Neither your name nor the patient’s name will be recorded anywhere on this paper. To begin, I would like to ask you about [INSERT PATIENT’S NAME] previous participation in the Medical Monitoring Project (MMP).

Q1. To your knowledge, has [INSERT PATIENT’S NAME] ever participated in the MMP interview? If you or anyone else participated in the MMP interview on his/her behalf, please include this, as well.

N o…………………………………..………..……… 00 Skip to Q2

Yes…………………………………..………..……... 01

Refused to answer ……………………………...…… 07

Don’t know ………………………..…..………….… 09 Skip to Q2

Q1a. What month and year did he/she participate in the MMP interview?

__ __ / __ __ __ __

^{( M M Y Y Y Y )}

[77 = Refused, 99 = Don’t know]

Q1b. Where was he/she interviewed?

_____________________________________ (City)

_____________________________________ (State)

[77 = Refused, 99 = Don’t know]

Interview instructions: If the patient was previously interviewed in a month during which 2006 data collection cycle interviews were conducted, go to Say Box before Q2. Otherwise, skip to Q2.

SAY: “We are only interviewing people this year who haven’t already been interviewed during 2006 (or 2007). Thank you very much for your time.” [DISCONTINUE INTERVIEW AND GO TO INTERVIEW COMPLETION MODULE.]

Q2. Is [INSERT PATIENT’S NAME] living or deceased?

Living……………………………………………… 01 Skip to Q2b

Deceased…………………………………………... 02

Q2a. What was the date of his/her death?

__ __/ __ __ / __ __ __ __

^{(M M / D D / Y Y Y Y )}

[77 = Refused, 99 = Don’t know]

Q2b. What is your relationship to him/her? [CHECK ONLY ONE RESPONSE.] [DON’T READ CHOICES.]

Spouse or partner…………………………………  01

Girlfriend or boyfriend……………………………  02

Friend……………………………………………...  03

Neighbor…………………………………………...  04

Parent………………………………………………  05

Sibling…………………………………………...…  06

Child……..…………………………………………  07

Grandparent…………………………… …………  08

Grandchild…………………………… ……………. 09

Aunt/Uncle…………………………… …………… 10

Niece/Nephew……………………………………...  11

Cousin………………………………………………  12

In-law …………………………….………………… 13

Care giver ………………………………………….. 14

Other …………………………………… …………. 15

(Specify:_________________________________)

Refused to answer…………………………………... 77

Don’t know……..…………………………………... 99

Q3. What is your date of birth?

__ __/ __ __ / __ __ __ __

^{(M M / D D / Y Y Y Y )}

Interviewer instructions: If person serving as a proxy is less than 18 years of age, go to Say Box before Q3a; otherwise, skip to Q3a.

SAY: “We are only interviewing people who are 18 years or older. Thank you very much for your time.” [DISCONTINUE INTERVIEW AND GO TO INTERVIEW COMPLETION MODULE.]

Q3a. What is his/her date of birth?

__ __/ __ __ / __ __ __ __

^{(M M / D D / Y Y Y Y )}

[77 = Refused, 99 = Don’t know]

Interviewer instructions: If respondent was less than 18 years of age on PDP start date, go to Say Box before Q4; otherwise, skip to Q4.

SAY: “We are only collecting information about people who were 18 years or older on _______/ ______ [BEGINNING OF THE PDP]. Thank you very much for your time.” [DISCONTINUE INTERVIEW AND GO TO INTERVIEW COMPLETION MODULE.]

Q4. What was his/her sex at birth? [CHECK ONLY ONE RESPONSE.] [READ CHOICES EXCEPT “Intersex/ambiguous”.]

Male…………….…………………..………………… 01

Female..………………………………..……………... 02

Intersex/ambiguous……………………………..…….  03

Refused to answer…………………………………… . 07

Don’t know……..…………………………………….  09

Q4a. Does (did) he/she consider himself/herself to be male, female, or transgender? [CHECK ONLY ONE RESPONSE.]

Male…………….…………………..………………… 01

Female..………………………………..……………... 02

Transgender…………………………………………... 03

Refused to answer…………………………………….  07

Don’t know…………………………………………… 09

Q5. What is the highest level of education he/she completed? [CHECK ONLY ONE RESPONSE.][DON’T READ CHOICES.]

Never Attended School...…………..…………….… 01

Grades 1 through 8 ……………………………….... 02

Grades 9 through 11.…………..………………….... 03

Grade 12 or GED..………………………………….  04

Some College, Associate’s Degree,

or Technical Degree.. ………………………. 05

Bachelor’s Degree………………....………….……  06

Any post-graduate studies ..…………………….…  07

Refused to answer………………..…………………  77

Don’t know………………………………….………  99

Q6. Does (Did) he/she consider himself/herself to be Hispanic or Latino/a?

N o…………………………………..………..………  00 Skip to Q7

Yes...…………………………………...……...…….  01

R efused to answer…………………………..……….  07

Skip to Q7

Don’t know..……...……………………………..…  09

Q6a. What best describes his/her Hispanic ancestry? [CHECK ALL THAT APPLY.] [DON’T READ CHOICES.]

Mexican…………….…..…………………………… 01

Puerto Rican………..……………………………….  02

Cuban…………...…………………..………………  03

Dominican……...…………………..………………  04

Other (Specify: _________________)………...………05

Refused to answer………....…………………………  07

Don’t know………………………..………….………… 09

Q7. Which racial group or groups does (did) he/she consider himself/herself to be in? You may choose more than one option. [CHECK ALL THAT APPLY.][READ CHOICES.]

Asian…………….…..………………....…………… 01

Black or African American…………….…..………  02

American Indian or Alaska Native…..……………… 03

Native Hawaiian or other Pacific Islander………...... 04

White…………….…..…………….......…………..... 05

Other (Specify: _________________)………………. 06

Refused to answer…………….…..…………… … ... 07

Q8. In the past 12 months, has (had) he/she been homeless at any time? By homeless, I mean he/she was living on the street, in a shelter, a Single Room Occupancy (SRO) hotel, temporarily staying with friends/family, or living in a car.

No………………….……………………... 00

Yes………………………………………..………  01

Refused to answer………………………………….. 07

Don’t know……………..………………………….. 09

Q9. In the past 12 months, has (had) he/she had any kind of health insurance or coverage? I am not referring to coverage for medicines only.

N o………………….…………………..………....…... 00 Skip to Q10

Yes………………………………………..…………... 01

R efused to answer………………………….……….… 07

Skip to Q10

Don’t know…….………………………….……….…. 09

Q9a. Was there a time in the past 12 months that he/she didn’t have any insurance coverage?

No………………….…………………..……………… 00

Yes………………………………………..…………… 01

Refused to answer…………………………………..… 07

Don’t know……………..………………………….…. 09

Q10. What are the main ways his/her prescription medicines for HIV and related illnesses were paid for in the past 12 months? [CHECK ALL THAT APPLY.] [DON’T READ CHOICES.]

He/she wasn’t taking any prescription medicines

for HIV or related illnesses..........…………….……….. 01

Private health care coverage............................................... 02

He/she got his/her HIV medicines at a public clinic……. 03

He/she paid for my HIV medicines himself/herself

(“out of pocket”)...............................................................04

AIDS Drug Assistance Program (ADAP)………..………. 05

He/she participated in a clinical research trial or drug

study that provided his/her medicines…..……..………… 06

An AIDS service organization provided him/her medicines.......... 07

Medicaid/Medicare…………………………………..  08

Other (Specify: ___________________________)…. 09

Refused to answer………………………...………….  77

Don’t know…….……………………...…….…….... . 99

Q11. In the past 12 months, has (had) he/she received any form of public assistance or welfare, including Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI)?

No, and he/she hasn’t applied for any ……..……..… 00

No, he/she applied, but hasn’t received any…...……. 01

Yes, he/she received………….………………….….. 02

Refused to answer………………………….……… 07

Don’t know…….………………………….……….  09

SAY: “Now I’m going to ask you some questions about getting tested for HIV and the care that he/she is (was) receiving for HIV.”

Q12. When did he/she first test positive for HIV?

__ __/ __ __ __ __

^{(M M / Y Y Y Y )}

[77 = Refused to answer, 99 = Don’t know]

Interviewer instructions: If date of first HIV positive test is after the PDP end date, confirm the date in Q12 If the date is correct, go to the Say Box before Q13; otherwise, go to Q13

SAY: “We are only interviewing people who tested positive for HIV before _______/ ______ [end of the PDP]. Thank you very much for your time.” [DISCONTINUE INTERVIEW AND GO TO INTERVIEW COMPLETION MODULE.]

Q13. When did he/she first go to a health care provider for HIV-related care after learning he/she had HIV?

__ __/ __ __ __ __

^{(M M / Y Y Y Y )}

[77 = Refused, 99 = Don’t know]

If date of first HIV-related care is after the PDP end date, confirm the date in Q13. If the date is correct, go to the Say Box below; otherwise, skip to Q14.

Say: “We are only interviewing people whose first HIV-related care was before _______/ ______ [END OF THE PDP]. Thank you very much for your time.” [DISCONTINUE INTERVIEW AND GO TO INTERVIEW COMPLETION MODULE.]

Q14. When did he/she last go to a health care provider for HIV care?

__ __/ __ __ __ __

^{(M M / Y Y Y Y )} [77 = Refused to answer, 99 = Don’t know]

SAY: “Now I’m going to ask you some questions about places where he/she gets (got) medical care for HIV. If you don’t know everything, that’s okay. Tell me what you remember.”

Q15. In the past 12 months, is (was) there one place in particular, like a doctor’s office or clinic, where he/she usually goes (went) for most of his/her HIV care, like CD4 tests, viral load tests or HIV medicines?

No………………….…………………..………  00 Yes………………………………………..……  01 Skip to Q15b

Skip to Q16

Refused to answer……………………………… 07

Don’t know……………..………………........... 09

Q15a. What are (were) the reasons he/she doesn’t (didn’t) have a usual source of care for treatment of HIV? [CHECK ALL THAT APPLY.] [DON’T READ CHOICES.]

Couldn’t afford a usual source of care……..……………………….  01

Didn’t know where to find regular HIV care.….……………….…... 02

Couldn’t get a regular appointment anywhere….…………….…….. 03

No HIV doctors in his/her area….………… ……………………… 04

Didn’t think it was necessary….…………………..………………... 05

Thought it was necessary, but never tried to get one ………………. 06

Didn’t know where to find a regular doctor who speaks the

same language as him/her………………..…………………………. 07

Have just recently been diagnosed .……………… ………………… 08

Did not feel the need to seek treatment for HIV ……………………. 09

Other (Specify:_____________________________________)……. 10

Refused to answer…………………………………………………… 77

Don’t know………..…………………………………………………  99

Interviewer instructions: Skip to Q16

Q15b. What is the name of the place? Remember, this information will be kept private.

Name:

Interviewer instructions: After recording response, go to paper Facility Visits Log and enter location information and additional information for this place. After entering this information, continue with the next question.

Note: Responses to this question and other similar facility contact questions are not collected for analysis, but only for obtaining sufficient contact information to locate respondent’s chart for medical record abstraction.

Note: QDS coding will allow for all possible facilities that participant describes. This rule applies to all other questions like this.

Q15c. Did he/she get HIV medical care at _____________ [THIS PLACE] between _____/_____ [BEGINNING OF THE PDP] and _______/ ______ [END OF THE PDP]?

No………………….…………………..…… 00 Yes………………………………………..… 01

Refused to answer…………………………… 07

Don’t know…………….………………......... 09

Q16. In the past 12 months, has (had) he/she been to any other doctor’s office or clinic for his/her HIV care? If he/she was in jail or prison during the last 12 months, please include those providers as well.

No………………….…………………..……. 00 Skip to Q17 Yes………………………………………..….. 01

Skip to Q17

Refused to answer…………………………… 07

Don’t know……………..………………........ 09

Q16a. What is the name of the place?

Name:

Interviewer instructions: After recording response, go to paper Facility Visits Log and enter location information and additional information for this place. After entering this information, continue with the next question.

Q16b. Did he/she get HIV medical care at _____________ [THIS PLACE] between _____/_____ [BEGINNING OF THE PDP] and _______/ ______ [END OF THE PDP]?

No………………….…………………..…… 00 Yes………………………………………..… 01

Refused to answer…………………………… 07

Don’t know…………….………………......... 09

Q17. During the past 12 months, how many times did he/she go to an emergency room for HIV care? (Please don’t include visits related to injuries such as accidents or other types of injuries).

____ ____

[77=Refused to answer, 99=Don’t know]

Q18. During the past 12 months, how many times did he/she go to an urgent care center for HIV care? (Please don’t include visits related to injuries such as accidents or other types of injuries).

____ ____

[77=Refused to answer, 99=Don’t know]

Q19. During the past 12 months, how many times was he/she admitted to a hospital because of an HIV-related illness? (Please don’t include visits that were made only to the Emergency Room.)

____ ____

[77=Refused to answer, 99=Don’t know]

If Q19 is “0”, skip to Say Box before Q20.

Q19a. What is the name of the hospital where he/she was admitted?

Name:

Interviewer instructions: After recording response, go to paper Facility Visits Log and enter location information and additional information for this place. After entering this information, continue with the next question.

Q19b. Was he/she hospitalized at _____________ [THIS PLACE] between _____/_____ [BEGINNING OF THE PDP] and _______/ ______ [END OF THE PDP]?

No………………….…………………..…… 00 Yes………………………………………..… 01

Refused to answer………………………….. 07

Don’t know…………….………………........ 09

SAY: “Now I’m going to ask some questions about the medicines that he/she was taking. To begin, I’ll ask about medicines his/her doctor prescribed to treat his/her HIV.

Q20. Has (had) he/she ever taken any antiretroviral medicines to treat his/her HIV? These medicines are also known as ART, HAART, or the AIDS cocktail.

No………………….…………………..……….. 00

Yes………………………………………..……. 01 Skip to Q21

Skip to Say Box before Q22

Refused to answer……………………………… 07

Don’t know……………..………………........... 09

Q20a. What are the reasons he/she has (had) never taken any antiretroviral medicines?

[CHECK ALL THAT APPLY.] [DON’T READ CHOICES.]

Doctor advised to delay treatment…..…………......  01

Recently into medical care/haven’t had time……….  02

CD4 count and/or viral load are good………...........  03

Feel good, don’t need them......……..………………  04

Worried about side effects …..………..…….….......  05

Drinking or using drugs…………..…..…….………  06

Didn’t want to think about being HIV positive.........  07

No money…………….……….…………....……….  08

No insurance………………….…………....……….  09

Worried about ability to adhere/often forget…........  10

Living on the street.…………………………..……. . 11

Taking alternative/complimentary medicines...........  12

Other ………………………………………………  13

(Specify:_________________________________)

Refused to answer ………………………………….  77

Don’t know…………………….………………......  99

Interviewer instructions: Skip to Say Box before Q22

Q21. Has (had) he/she taken antiretroviral medicines in the past 12 months?

No………………….…………………..………  00

Yes………………………………………..……  01

Refused to answer…………………………….  07

Don’t know……………..………………..........  09

SAY: “Now I am going to ask you some questions about his/her need for services related to HIV.”

In the past 12 months, has (had) he/she needed any of these services: [Show RESPONSE CARD F.] [read choices.]

Interviewer instructions: If response to Q22a is “No”, 77 or 99, skip to Q23a; otherwise, go to Q22b. If response to Q22b is “Yes”, 77 or 99, skip to Q23a; otherwise, go to Q22c. Follow the same pattern for Q22-Q35.

	[Needed this service in the past 12 months?]	If “Yes” in Q22a-Q35a, ask: Has (had) he/she been able to get this service in the past 12 months?	If “No” in Q22b-Q35b, ask: What was the main reason he/she hasn’t (had not) been able to get this service?
	CODE: No = 00, Yes = 01, Refused to answer= 77, Don’t know = 99	CODE: No = 00, Yes = 01, Refused to answer= 77, Don’t know = 99	See code list below for responses [ENTER ONLY ONE RESPONSE.] [DON’T READ CHOICES.]
Q22. HIV case management services	a. [_____]	b. [_____]	c. [___ ___]
Q23. Mental health counseling	a. [_____]	b. [_____]	c. [___ ___]
Q24. Social services, such as insurance assistance or financial counseling	a. [_____]	b. [_____]	c. [___ ___]
	[Needed this service in the past 12 months?]	If “Yes” in Q22a-Q35a, ask: Has (had) he/she been able to get this service in the past 12 months?	If “No” in Q22b-Q35b, ask: What was the main reason he/she hasn’t (had not) been able to get this service?
	CODE: No = 00, Yes = 01, Refused to answer= 77, Don’t know = 99	CODE: No = 00, Yes = 01, Refused to answer= 77, Don’t know = 99	See code list below for responses [ENTER ONLY ONE RESPONSE.] [DON’T READ CHOICES.]
Q25. Assistance in finding a doctor for ongoing medical services	a. [_____]	b. [_____]	c. [___ ___]
Q26. Assistance in finding dental services	a. [_____]	b. [_____]	c. [___ ___]
Q27. Adherence support services	a. [_____]	b. [_____]	c. [___ ___]
Q28. Home health services, such as home nursing care or assistance	a. [_____]	b. [_____]	c. [___ ___]
Q29. Chore or homemaker services (paid or volunteer)	a. [_____]	b. [_____]	c. [___ ___]
Q30. Assistance in finding shelter or housing	a. [_____]	b. [_____]	c. [___ ___]
Q31. Assistance with finding meals or food	a. [_____]	b. [_____]	c. [___ ___]
Q32. Transportation assistance	a. [_____]	b. [_____]	c. [___ ___]
Q33. Childcare services	a. [_____]	b. [_____]	c. [___ ___]
Q34. Education or information on HIV risk reduction	a. [_____]	b. [_____]	c. [___ ___]
Q35. Other (Specify:___________________)	a. [_____]	b. [_____]	c. [___ ___]

Interviewer instructions: For Q22c-Q35c: [ENTER ONLY ONE RESPONSE.][DON’T READ CHOICES.]

1. Didn’t know where to go or who to call

2. Didn’t complete application process

3. The system is too confusing

4. The waiting list is too long

5. It’s not available in my area

6. They charge too much

7. Didn’t have the money to pay

8. Transportation problems

9. Language barrier

10. Not eligible / Denied services

11. Too sick to get out

12. Other (Specify_____________)

77. Refused

99. Don’t know

Time questionnaire ended:  ___ ___:___ ___  □ AM    □ PM

Hour Minute

Interview Completion

END OF INTERVIEW

SAY: “Thank you again for taking part in this survey. Please remember that all the information you have given me will be kept private. ”

Interviewer instructions:

Offer assistance with information and resources, according to local protocol.

If interview was discontinued due to prior interview during the current calendar year OR respondent age < 18, don’t pay the respondent.

If interview was discontinued due to first HIV positive test after the PDP, OR interview was partially/fully completed, pay the respondent and have him/her sign the receipt.

Interviewer: Please enter the following items after completion of the interview.
			PAYMENT VERIFICATION
		C1.	Payment made:
				No……………………………………..………..…….. 00
				Yes ...…………………………………...……...……  01		Skip to C2
		C1a.	Why was payment not made?
				Participant refused payment…………………………... 01		Skip to C3
				O ther…………………………………...……...……… 02		Skip to C3
				(Specify:) ______________________________________
		C2	Receipt signed (or initialed):
				No…………………………………..………..………... 00
				Y es...…………………………………...……...……… 01		Skip to C3
		C2a.	Why was receipt not signed?
				Participant refused to sign..…………………………... 01
				Other…………………………………...……...……… 02
				(Specify:) ______________________________________
		C3. Reason MMP Proxy Questionnaire was administered:
				Participant is ill…..……...……………………………. 01
				Participant is deceased…………....……...…………… 02
		Other…………………………………...……...……… 03
		(Specify:) ______________________________________
		C4. How confident are you of the validity of the respondent’s answers?
				Confident..………….…………………..……….......…01
				Some doubts..................…………………..…………... 02
				Not confident at all............…………………………..... 03
	C5. Record any additional comments, including disruptions that might have taken place during the interview, reason the interview might have been stopped, or why the respondent’s answers may not have been reliable.
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