Form 0920-22GA Att 4k_Aim2aCohortFollowUpSurveyEnglish

[NCHHSTP] Expanding PrEP in Communities of Color (EPICC)

Att_4k_Aim2aCohortFollowUpSurveyEnglish[1]

Aim 2a Cohort Follow-up Survey (English/Spanish)

OMB: 0920-1423

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OMB No. 0920-New

Expiration Date: XX/XX/XXXX










Expanding PrEP in Communities of Color (EPICC+)


Attachment 4k

Aim 2a Cohort Follow Up Survey English






















Public reporting burden of this collection of information is estimated to average 45 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/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; Attn: OMB-PRA (0920-New)




Cohort Follow Up Survey


Table of Contents


  1. SOCIOECONOMIC AND RISK CORRELATES

  2. HEALTHCARE ACCESS, COMMUNICATION, AND STI TESTING/DIAGNOSIS

  3. HIV

  4. PrEP ROUTING

  5. CURRENT PrEP USE

  6. NEW PrEP PRESCRIPTION

  7. PrEP RESTART

  8. PREVIOUS PrEP USE: NO PLANS TO RESTART/UNSURE

  9. NO PRIOR PrEP USE: NO PLANS TO START/UNSURE

  10. PrEP CHOICES

  11. PREP ADHERENCE AND BARRIERS

  12. TECHNOLOGY USE AND ONLINE PARTNER SEEKING BEHAVIOR

  13. RELATIONSHIPS AND SEXUAL HEALTH PRIORITIES

  14. SEXUAL BEHAVIORS

  15. SUBSTANCE USE

  16. MENTAL HEALTH

  17. EVERYDAY DISCRIMINATION

  18. SOCIAL SUPPORT AND ISOLATION

  19. EPICC APP USABILITY & ACCEPTABILITY

  20. DBS USABILITY & ACCEPTABILITY

Welcome back to EPICC!


Thank you for your participation in this important project. This survey will take approximately 45 minutes to complete.


In this survey, we will ask some questions to try to learn about you and your health. This survey also includes some questions around sensitive topics. All the information you enter in this survey is kept completely confidential. Your answers are private--the information you provide us will be kept secure and known only to study staff. The survey includes some personal questions about your sexual behavior, health, substance use, and other areas some people may consider sensitive. We take your privacy very seriously and will keep all responses confidential, so please be as honest as you can.


You can skip questions if you need to by selecting “Decline to answer,” but we encourage you to answer every question. All of this information will help this study learn more about PrEP, HIV prevention, and other important topics.


Time-based Recall Questions


Many questions ask you to think back over the past week, weeks, month, or even several months. Please read each question to see if it is asking you to think back over a certain period and note that the period will switch between some questions.


As a reminder, today's date is [current date]


A Note about Language


We want to acknowledge that some of the language used in our study questions may include some outdated language or lack the diversity of experiences that we now understand exist.

Although we do our best to use measures that reflect emerging language, at times the items available in research are not where they need to be and are drawn from items developed years ago. Wherever possible, we have updated the language or are working with developers to get new versions. Please remember that you can always decline to answer items that do not reflect you.


If you have any questions or comments, let your study staff know. Please click the button below to get started with the survey.




  1. SOCIOECONOMIC AND RISK CORRELATES

[ALL FOLLOW-UP SURVEYS]

[B4 and B5 is asked at 6, 12, 18 months only]


B1. In the past 3 months, have you been homeless? By homeless, I mean you were living on the street, in a shelter, in a Single Room Occupancy hotel (SRO), or in a car.

    • No

    • Yes

    • Decline to answer [Yes = B2, otherwise B3]


B2. Are you currently homeless?

    • No

    • Yes

    • Decline to answer


B3. What zip code do you live in?

  • Decline to answer


B4. Has your marital status changed in past 6 months?

    • No

    • Yes

    • Decline to answer


[Yes=B4, otherwise B6]

B5. What is current marital status?

    • Married

    • Living together as married

    • Separated

    • Divorced

    • Widowed

    • Never married

    • Decline to answer


B6. Are you currently in school?

    • No

    • Yes, full-time

    • Yes, part-time

    • Enrolled in a program but on a temporary leave of absence

    • Decline to answer


B7. What best describes your employment status? Are you:

    • Employed full-time

    • Employed part-time

    • A homemaker

    • A full-time student

    • Retired

    • Unable to work for health reasons

    • Unemployed

    • Other

    • Decline to answer


B8. In the past 3 months, was there a time where there wasn’t enough money in your house for rent, food, phone or utilities such as gas or electric?

    • No

    • Yes

    • Decline to answer


B9. In the past 3 months, did you or other adults in the household ever cut the size of your meals or skip meals because there wasn't enough money for food?

    • Yes

    • No

    • Decline to answer


B10. What is your primary means of transportation?

    • Personal automobile or motorcycle

    • Friend, relative, or neighbor

    • Public transportation (bus, metro, train)

    • Bicycle

    • Walking

    • Lyft, Uber, or other ride share service

    • Something else

    • Decline to answer


B11. Have you been arrested in the past 3 months? [Yes = B17, otherwise next Section C]

    • No

    • Yes

    • Decline to answer


B12. Have you been put in jail, prison, or juvenile detention (juvy) in the past 3 months?

    • No

    • Yes

    • Decline to answer


  1. HEALTHCARE ACCESS, COMMUNICATION, AND STI TESTING/DIAGNOSIS

[ALL FOLLOW-UP SURVEYS EXCEPT FOR QUESTION C3]

[C3 is asked at 6, 12, 18 months only]


C1. Do you currently have health insurance or health care coverage? This includes private health insurance (for example: Blue Cross Blue Shield or parent's private insurance) and public health care insurance or coverage (for example: Medicaid or Medicare).

[Yes = C2, otherwise C3]

    • Yes, I have my own

    • Yes, I am covered by my parent/guardian

    • Yes, I am covered by my spouse/partner.

    • No

    • Decline to answer

C2. What kind of health insurance or coverage do you currently have? Select all that apply.

    • A private health plan - through an employer or purchased directly

    • Medicaid - for some people with low incomes

    • Medicare - for the elderly and people with disabilities

    • Some other government plan

    • TRICARE / CHAMPUS

    • Veterans Administration coverage

    • Some other health insurance

    • Decline to answer


[12 month only]

C3. About how long has it been since you last saw a doctor, nurse, or other health care provider about your own health? Would you say it was . . .

    • Within the past year

    • More than 1 year ago but less than 2 years ago

    • 2 to 5 years ago

    • More than 5 years ago

    • Decline to answer


C4. How sure are you that you could communicate about the following (if necessary) with healthcare providers:

[6, 12, 18 months only]



Not at all sure

Somewhat sure

Moderately sure

Very sure

Totally sure

Decline to answer

Ask your healthcare provider things about an illness you have/had that concerns you?







Discuss openly with your healthcare provider any problems that may be related to your medications?







Work out differences with your healthcare provider when they arise?







Ask your healthcare provider things about your health (like tests or treatments) that concern you?







Discuss openly with your healthcare provider your past or current drug and/or alcohol use?







Discuss openly with your healthcare provider your sexual activity?








The following questions ask about testing for sexually transmitted infections or STIs such as genital herpes, gonorrhea, chlamydia, syphilis, and genital or anal warts.


C5. In the past 3 months, have you been tested for an STI that was not HIV? [Yes = C5, otherwise C6]

    • No

    • Yes

    • I don’t know

    • Decline to answer


C6. In the past 3 months has your doctor or health care professional told you that you had any of the following STIs? (Check all that apply. If none, please check “None of these”.)

    • Genital Herpes

    • Gonorrhea

    • Chlamydia

    • Syphilis

    • Genital or Anal Warts

    • Another STI, specify:

    • I can’t remember

    • None of these

    • I did not see a health care professional in the past 3 months

    • Decline to answer


C7. How likely are you to get tested for STIs in the next 3 months?

    • Very Unlikely

    • Somewhat Unlikely

    • Somewhat Likely

    • Very Likely

    • Decline to answer


  1. HIV

[ALL FOLLOW-UP SURVEYS EXCEPT QUESTION D4]


[D4 asked only at 6, 12, 18 months]


In this next part of the survey, we will ask you some questions about your experiences with and thoughts about HIV. Once again, we remind you that all questions will be kept completely confidential.


D1. Have you been tested for HIV in the past 3 months? [Yes = D2 otherwise D3]

    • No

    • Yes

    • Decline to answer


D2. When did you have your most recent HIV test? Please enter the month and year. It is OK if you don’t know the exact date. Please make your best guess.

    • [Month]

    • [Year]

    • Decline to answer


D3. On a scale of 1-10 with 1 being not concerned at all and 10 being extremely concerned, overall, how concerned are you about getting HIV?

Not at all concerned Extremely concerned

0 10

    • Decline to answer

D4. Please consider the following statements and select how much you agree or disagree with them

[6, 12, 18 months only]



Strongly Agree


Agree

Neither Agree nor Disagree


Disagree

Strongly Disagree

Decline to answer

Most people in my community would discriminate against someone with HIV


1


2


3


4

5

9

Most people in my community would support the rights of a person with HIV to live and work wherever they wanted to



1



2



3



4

5

9

Most people in my community would not be friends with someone with HIV


1


2


3


4

5

9

Most people in my community think that people who got HIV through sex or drug use have gotten what they deserve



1



2



3



4

5

9



  1. PrEP Routing

[ALL FOLLOW-UP SURVEYS]


HIV pre-exposure prophylaxis, or PrEP, is a medication that can be used to reduce the risk of HIV infection. PrEP is prescribed by a doctor/health care provider.


E1. Are you currently using PrEP? [Yes = skip to Section F]

    • Yes

    • No


E2. Have you previously used PrEP [No = skip to E4]

    • Yes

    • No


E3. Are you planning on restarting PrEP soon (by soon, we mean in the next 1-2 weeks)?

[Yes = skip to Section H; Otherwise skip to Section I]

    • Yes

    • No

    • Not sure


E4. Are you planning on starting PrEP soon (by soon, we mean in the next 1-2 weeks)? [Yes = skip to section G; Otherwise skip to Section J]

    • Yes

    • No

    • Not sure


  1. Current PrEP Use

[ALL FOLLOW-UP SURVEYS]


F1. What kind of PrEP are you currently using?


Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer


[Questions F2 F20 only pertain to those on PrEP at the previous survey]

[Questions F21 F37 only pertain to those NOT on PrEP at the previous survey including those who were planning/considering starting but were not yet on PrEP]


[If on PrEP at last survey: F2; otherwise skip to F21]

F2. At your last survey on [pipe in date], you reported using [pipe in modality here]. You indicated that you’re currently using [pipe in F1 response]. Is this correct?

    • Yes

    • No, updated answer:

    • Decline to answer



[F3-F6 are for those where current modality is different from previous modality] [If current modality is the same as previous survey, skip to F7]


[If current modality != modality from last survey, otherwise skip to F7]

F3. When did you stop using [pipe in previous modality]? It’s OK if you don’t the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F4. When did you start using [pipe in current modality from F1]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F5. Why did you start using [current modality]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer


F6. Please rank the reasons why you started taking [current modality] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F5] rank order list

    • Decline to answer


F7. Since your last survey on [pipe in date] where you were using [pipe in modality],

have you used any other kind of PrEP other than what you are currently using? [Yes=F8, otherwise F38]

    • No

    • Yes Decline to answer


F8. Besides [modality from previous visit] and [modality they’re currently using], what other kind(s) of PrEP have you used since your last survey? Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.). If you have only used one other type of PrEP since [pipe in last survey date], please put a “1” next to that method.


Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png

    • Other (please specify):

    • Decline to answer


[If any methods selected from table: Questions F9- F14 pertain to the first PrEP method selected in F8]

F9. When did you start this medication: [pull answer #1 from F8]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F10. When did you stop this medication: [pull answer #1 from F8]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F11. Why did you start using [pull answer #1 from F8]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=F12, otherwise F13]


F12. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F11] rank order list

    • Decline to answer [Skip to F13]


F13. Why did you stop taking this medication, [pull answer #1 from F8]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer

F14. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F13] rank order list

    • Decline to answer


[If >1 PrEP method selected in F8 = F15; Otherwise skip to F38].

F15. When did you start this medication: [pull answer #2 from F8]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

    • Decline to answer

F16. When did you stop this medication: [pull answer #2 from F8]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

    • Decline to answer

F17. Why did you start using [pull answer #2 from F8]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=F18, otherwise F19]


F18. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F17] rank order list

    • Decline to answer


F19. Why did you stop taking this medication, [pull answer #2 from F8]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


F20. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F19] rank order list

    • Decline to answer

[F21 F37 for those NOT on PrEP at last survey; if on PrEP at previous survey, skip to F38] [For those not on PrEP at last survey]

F21. When did you start using [pipe in current modality]? It’s OK if you don’t know the exact

date. Please provide your best guess. [Month]

[Year]

Decline to answer


F22. Why did you start using [current modality]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

F23. Please rank the reasons why you started taking [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F22] rank order list

    • Decline to answer


[For those not on PrEP at last survey]

F24. Since your last survey on [pipe in date], have you used any other kind of PrEP other than what you are currently using?

[Yes=F25, otherwise F38]

    • No Yes

Decline to answer


F25. What kind(s) of PrEP have you used since your last survey other than what you’re currently using? Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.). If you have only used one other type of PrEP since [pipe in last survey date], please put a “1” next to that method.



Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer

F26. When did you start this medication: [pull answer #1 from F25]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F27. When did you stop this medication: [pull answer #1 from F25]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F28. Why did you start using [pull answer #1 from F25]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=F29, otherwise F30]


F29. Please rank the reasons why you started taking [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F28] rank order list

    • Decline to answer


F30. Why did you stop taking this medication, [pull answer #1 from F25]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


F31. Please rank the reasons why you stopped using that type of PrEP in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F30] rank order list

    • Decline to answer


[If >1 PrEP method selected in F25 = F32; Otherwise skip to F38].

F32. When did you start this medication: [pull answer #2 from F25]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F33. When did you stop this medication: [pull answer #2 from F25]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


F34. Why did you start using [pull answer #2 from F25]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer


[Selected multiple options=F35, otherwise F36]


F35. Please rank the reasons why you started taking [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F34] rank order list

    • Decline to answer


F36. Why did you stop using this medication, [pull answer #2 from F25]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer

F37. Please rank the reasons why you stopped PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F36] rank order list

    • Decline to answer


[All current PrEP users: F38-F51]


F38a. Why do you currently use PrEP? (Choose all that apply)

    • I’m having sex with or thinking about having sex with someone who is living with HIV

    • I’m having sex with or thinking about having sex with someone whose HIV status I don’t know

    • I want to be in control of my sexual health

    • I want to reduce my anxiety around sex

    • I want to increase my sexual satisfaction and intimacy

    • I want to be safe and healthy

    • I want to have a better future

    • I am having sex with multiple partners

    • I don’t always use condoms (or don’t like using them)

    • My partner won’t use condoms

    • I had a previous HIV scare

    • My health care provider recommended it

    • I was recently diagnosed with a sexually transmitting infection (STI)

    • Many people in my community take PrEP

    • Other, please specify:

    • Decline to answer


[Selected multiple options=F38b, otherwise F39]

F38b. Please rank the reasons why you are currently using PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F38a] rank order list

    • Decline to answer

F39. Since your last survey [pipe in date], have you ever stopped taking PrEP? By this we mean fully stopping PrEP (more than just one missed dose).

    • Yes

    • No

    • Decline to answer


[F39 = yes, otherwise skip to F45]

F40. Did you talk with your doctor/health care provider before stopping PrEP?

    • No

    • Yes

    • Decline to answer


F41. Why did you stop using this medication? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer

F42. Please rank the reasons why you stopped PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F41] rank order list

    • Decline to answer


F43. Please choose the statements that describe your sexual behavior after you stopped taking PrEP. (Choose all that apply)

    • I did not have any sexual contact after I stopped taking PrEP [Skip to F45]

    • I had oral sex after I stopped taking PrEP

    • I had anal sex after I stopped taking PrEP

    • I had vaginal sex when I stopped taking PrEP (put your penis in a vagina or neovagina)

    • Decline to answer


F44. Please choose the statements that describe your use of condoms after you stopped taking PrEP. (Choose all that apply)

    • I used a condom with every sexual contact after I stopped taking PrEP

    • I used a condom for most sexual contacts after I stopped taking PrEP

    • I used a condom for some sexual contacts after I stopped taking PrEP

    • I did not use condoms after I stopped taking PrEP

    • Decline to answer

F45. How satisfied are you with the kind of PrEP you are currently using?

    • Very satisfied

    • Moderately satisfied

    • Neither satisfied nor dissatisfied

    • Moderately dissatisfied

    • Very dissatisfied

    • Decline to answer


F46. What do you think about how effective PrEP is at preventing someone from getting HIV, when it is taken the way it is prescribed?

    • Very/completely effective

    • Somewhat effective

    • Minimally effective

    • Not at all effective

    • Decline to answer


F47. What do you think about whether PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?

    • HIV PrEP has no effect on other STIs

    • HIV PrEP helps to prevent other STIs

    • Decline to answer


F48. To what extent do you think taking PrEP affects your likelihood to use condoms?

    • Significantly less likely

    • Somewhat less likely

    • Will not change

    • Somewhat more likely

    • Significantly more likely

    • Decline to answer


F49. Who knows that you use PrEP? (Check all that apply)

    • Family member(s)

    • Friend(s)

    • Romantic partner(s)

    • Sex partner(s)

    • Health care provider (other than your PrEP provider)

    • Other(s), please specify

    • No one

    • Decline to answer

Now we want to ask you a few questions about your experiences and feelings related to using PrEP.

[F50 and F51, only 3, 9, and 15M surveys]

F50. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I have been rejected romantically for taking PrEP







I have been judged by a health care provider because of taking PrEP







I have been blamed by people in my community for spreading HIV through PrEP use







I have been slut-shamed for taking PrEP (or told that I am a "Truvada or Descovy slut/whore")







I have been unfairly discriminated against for taking PrEP







I have been yelled at or scolded because of taking PrEP







I have experienced physical violence because of taking PrEP








F51. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I worry people will assume I sleep around if they know I take PrEP








I worry people will assume that I am HIV+ if they know I take PrEP







I worry people will think my partner(s) are HIV+ if they know I take PrEP







I worry about listing PrEP as one of my current medications during doctor appointments







I feel ashamed to tell other people I am taking PrEP







I worry people will think I am a bad person if they know I take PrEP







I worry people will think I am gay if they know I take PrEP







I worry my friends will find out that I take PrEP







I worry my family will find out that I take PrEP







I worry my sex partners will find out that I take PrEP







I think people will give me a hard time if I tell them I take PrEP







I think people will judge me if they know I am taking PrEP








[Skip to Section K]



  1. New PrEP Prescription


G1. What kind of PrEP are you planning to start?


Daily oral

A pill taken daily

Truvada®, Descovy®,


PrEP


emtricitabine/tenofovir



disoproxil fumarate,



emtricitabine/tenofovir



alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer

G2. When are you planning on starting PrEP. It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


G3. Why have you decided to start PrEP? (Choose all that apply)

    • I’m having sex with or thinking about having sex with someone who is living with HIV

    • I’m having sex with or thinking about having sex with someone whose HIV status I don’t know

    • I want to be in control of my sexual health

    • I want to reduce my anxiety around sex

    • I want to increase my sexual satisfaction and intimacy

    • I want to be safe and healthy

    • I want to have a better future

    • I am having sex with multiple partners

    • I don’t always use condoms (or don’t like using them)

    • My partner won’t use condoms

    • I had a previous HIV scare

    • My health care provider recommended it

    • I was recently diagnosed with a sexually transmitting infection (STI)

    • Many people in my community take PrEP

    • Other, please specify:

    • Decline to answer


[Selected multiple options=G4, otherwise G5]


G4. Please rank the reasons why you are starting PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from G3] rank order list

    • Decline to answer


G5. What do you think about how effective PrEP is at preventing someone from getting HIV, when it is taken the way it is prescribed?

    • Very/completely effective

    • Somewhat effective

    • Minimally effective

    • Not at all effective

    • Decline to answer


G6. What do you think about whether PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?

    • HIV PrEP has no effect on other STIs

    • HIV PrEP helps to prevent other STIs

    • Decline to answer


G7. To what extent do you think taking PrEP will affect your likelihood to use condoms?

    • Significantly less likely

    • Somewhat less likely

    • Will not change

    • Somewhat more likely

    • Significantly more likely

    • Decline to answer


G8. Who knows that you are planning to start PrEP? (Check all that apply)

    • Family member(s)

    • Friend(s)

    • Romantic partner(s)

    • Sex partner(s)

    • Health care provider (other than your PrEP provider)

    • Other(s), please specify

    • No one

    • Decline to answer


Now we want to ask you a few questions about your feelings related to starting PrEP. [G9 only 3, 9, and 15M surveys]

G9. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I worry people will assume I sleep around if they know I take PrEP








I worry people will assume that I am HIV+ if they know I take PrEP







I worry people will think my partner(s) are HIV+ if they know I take PrEP







I worry about listing PrEP as one of my current medications during doctor appointments







I feel ashamed to tell other people I am taking PrEP







I worry people will think I am a bad person if they know I take PrEP







I worry people will think I am gay if they know I take PrEP







I worry my friends will find out that I take PrEP







I worry my family will find out that I take PrEP







I worry my sex partners will find out that I take PrEP







I think people will give me a hard time if I tell them I take PrEP







I think people will judge me if they know I am taking PrEP








[Skip to Section K]



  1. PrEP Restart

H1. What kind of PrEP are you planning to start?


Daily oral

A pill taken daily

Truvada®, Descovy®,


PrEP


emtricitabine/tenofovir



disoproxil fumarate,



emtricitabine/tenofovir



alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer


H2. When are you planning on restarting PrEP. It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


[H3-H9 if on PrEP at previous survey, otherwise skip to H10]

H3. At your last survey on [pipe in date] you reported using [pipe in modality]. When did you stop this medication? It’s OK if you don’t know the exact date. Please provide your best guess. [Month]

[Year]

Decline to answer


H4. Why did you stop taking this medication? (Choose all that apply)

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer

H5. Please rank the reasons why you stopped PrEP at that time in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from H4] rank order list

    • Decline to answer


H6. Did you talk with your doctor/health care provider before stopping PrEP?

    • No

    • Yes

    • Decline to answer


H7. Please choose the statements that describe your sexual behavior after you stopped taking PrEP. (Choose all that apply)

    • I did not have any sexual contact after I stopped taking PrEP [Skip to H9]

    • I had oral sex after I stopped taking PrEP

    • I had anal sex after I stopped taking PrEP

    • I had vaginal sex when I stopped taking PrEP (put your penis in a vagina or a neovagina)

    • Decline to answer


H8. Please choose the statements that describe your use of condoms after you stopped taking PrEP. (Choose all that apply)

    • I used a condom with every sexual contact after I stopped taking PrEP

    • I used a condom for most sexual contacts after I stopped taking PrEP

    • I used a condom for some sexual contacts after I stopped taking PrEP

    • I did not use condoms after I stopped taking PrEP

    • Decline to answer


H9. Since your last survey on [pipe in date] where you were using [pipe in modality], have you used any other kind of PrEP other than what you are planning to start? [Yes=H11, otherwise H23]

    • No

    • Yes

    • Decline to answer


[For those not on PrEP at previous survey]

H10. Since your last survey on [pipe in date], have you used any other kind of PrEP other than what you are planning to start?

[Yes=H11, otherwise H23]

    • No

    • Yes

    • Decline to answer

H11. Besides [modality from previous visit if on PrEP then] and [modality they’re planning to use], what other kind(s) of PrEP have you used since your last survey? Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.). If you have only used one other type of PrEP since [pipe in last survey date], please put a “1” next to that method.


Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png

    • Other (please specify):

    • Decline to answer


H12. When did you start this medication: [pull answer #1 from H11]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


H13. When did you stop this medication: [pull answer #1 from H11]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


H13. Why did you start using [pull answer #1 from H11]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=H14, otherwise H15]


H14. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from H13] rank order list

    • Decline to answer


H15. Why did you stop taking this medication, [pull answer #1 from H11]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


H16. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from H15] rank order list

    • Decline to answer


[If >1 PrEP method selected in H11 = H17; Otherwise skip to H23].

H17. When did you start this medication: [pull answer #2 from H11]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


H18. When did you stop this medication: [pull answer #2 from H11]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


H19. Why did you start using [pull answer #2 from H11]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=H20, otherwise H21]


H20. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from H19] rank order list

    • Decline to answer


H21. Why did you stop taking this medication, [pull answer #2 from H11]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


H22. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from F21] rank order list

    • Decline to answer


[All those planning to restart]

H23. Why have you decided to restart PrEP? (Choose all that apply)

    • I’m having sex with or thinking about having sex with someone who is living with HIV

    • I’m having sex with or thinking about having sex with someone whose HIV status I Decline to answer

    • I want to be in control of my sexual health

    • I want to reduce my anxiety around sex

    • I want to increase my sexual satisfaction and intimacy

    • I want to be safe and healthy

    • I want to have a better future

    • I am having sex with multiple partners

    • I don’t always use condoms (or don’t like using them)

    • My partner won’t use condoms

    • I had a previous HIV scare

    • My health care provider recommended it

    • I was recently diagnosed with a sexually transmitting infection (STI)

    • Many people in my community take PrEP

    • Other, please specify:

    • Decline to answer


[Selected multiple options=H24, otherwise H25]


H24. Please rank the reasons why you are restarting PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from H23] rank order list

    • Decline to answer


H25. Who knows that you are planning to restart PrEP? (Check all that apply)

    • Family member(s)

    • Friend(s)

    • Romantic partner(s)

    • Sex partner(s)

    • Health care provider (other than your PrEP provider)

    • Other(s), please specify

    • No one

    • Decline to answer


H26. What do you think about how effective PrEP is at preventing someone from getting HIV, when it is taken the way it is prescribed?

    • Very/completely effective

    • Somewhat effective

    • Minimally effective

    • Not at all effective

    • Decline to answer


H27. What do you think about whether PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?

    • HIV PrEP has no effect on other STIs

    • HIV PrEP helps to prevent other STIs

    • Decline to answer


H28. To what extent do you think restarting PrEP will affect your likelihood to use condoms?

    • Significantly less likely

    • Somewhat less likely

    • Will not change

    • Somewhat more likely

    • Significantly more likely

    • Decline to answer


Now we want to ask you a few questions about your feelings related to previously taking PrEP. [H29 and H30 only 3, 9, and 15M surveys]

H29. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I have been rejected romantically for taking PrEP







I have been judged by a health care provider because of taking PrEP







I have been blamed by people in my community for spreading HIV through PrEP use







I have been slut-shamed for taking PrEP (or told that I am a "Truvada or Descovy slut/whore")








I have been unfairly discriminated against for taking PrEP







I have been yelled at or scolded because of taking PrEP







I have experienced physical violence because of taking PrEP








Shape3


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I worry people will assume I sleep around if they know I take PrEP







I worry people will assume that I am HIV+ if they know I take PrEP







I worry people will think my partner(s) are HIV+ if they know I take PrEP







I worry about listing PrEP as one of my current medications during doctor appointments







I feel ashamed to tell other people I am taking PrEP







I worry people will think I am a bad person if they know I take PrEP







I worry people will think I am gay if they know I take PrEP







I worry my friends will find out that I take PrEP







I worry my family will find out that I take PrEP







I worry my sex partners will find out that I take PrEP








Now we want to ask you a few questions about your feelings related to restarting PrEP. H30. Please select how much you agree with the following statements:


I think people will give me a hard time if I tell them I take PrEP







I think people will judge me if they know I am taking PrEP









  1. Previous PrEP users: not restarting/unsure



[I1-I7 if on PrEP at previous survey, otherwise skip to I8]


I1. At your last survey on [pipe in date] you reported using [pipe in modality]. When did you stop this medication? It’s OK if you don’t know the exact date. Please provide your best guess. [Month]

[Year]

Decline to answer


I2. Why did you stop taking this medication? (Choose all that apply)

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


I3. Please rank the reasons why you stopped PrEP at that time in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I2] rank order list

    • Decline to answer


I4. Did you talk with your doctor/health care provider before stopping PrEP?

    • No

    • Yes

    • Decline to answer


I5. Please choose the statements that describe your sexual behavior after you stopped taking PrEP. (Choose all that apply)

    • I did not have any sexual contact after I stopped taking PrEP [Skip to I7]

    • I had oral sex after I stopped taking PrEP

    • I had anal sex after I stopped taking PrEP

    • I had vaginal sex when I stopped taking PrEP (put your penis in a vagina or neovagina)

    • Decline to answer


I6. Please choose the statements that describe your use of condoms after you stopped taking PrEP. (Choose all that apply)

    • I used a condom with every sexual contact after I stopped taking PrEP

    • I used a condom for most sexual contacts after I stopped taking PrEP

    • I used a condom for some sexual contacts after I stopped taking PrEP

    • I did not use condoms after I stopped taking PrEP

    • Decline to answer


I7. Since your last survey on [pipe in date] where you were using [pipe in modality], have you used any other kind of PrEP?

[Yes=I9, otherwise I22]

    • No

    • Yes

    • Decline to answer


[For those not on PrEP at previous survey]

I8. Since your last survey on [pipe in date], have you used any other kind of PrEP? [Yes=I9, otherwise I22]

    • No

    • Yes

    • Decline to answer


I9. Besides [modality from previous visit if on PrEP then], what kind(s) of PrEP have you used since your last survey? Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.). If you have only used one other type of PrEP since [pipe in last survey date], please put a “1” next to that method.


Daily oral

A pill taken daily

Truvada®, Descovy®,


PrEP


emtricitabine/tenofovir



disoproxil fumarate,



emtricitabine/tenofovir



alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png

    • Other (please specify):

    • Decline to answer


I10. When did you start this medication: [pull answer #1 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


I11. When did you stop this medication: [pull answer #1 from I9]? It’s OK if you know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


I12. Why did you start using [pull answer #1 from I9]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=I13, otherwise I14]


I13. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason you switched, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I12] rank order list


I14. Why did you stop taking this medication, [pull answer #1 from I9]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


I15. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I14] rank order list

    • Decline to answer


[If >1 PrEP method selected in I9 = I16; Otherwise skip to I22].

I16. When did you start this medication: [pull answer #2 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


I17. When did you stop this medication: [pull answer #2 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


I18. Why did you start using [pull answer #2 from I9]? (Check all that apply)

    • Recommended by doctor/health care provider

    • Recommended by a friend, partner, or family member

    • Cost

    • Side effects

    • Insurance issues

    • Easier to use

    • Safer to use

    • More effective at preventing HIV infection

    • Required fewer visits/labs/pharmacy visits

    • Dosing schedule was easier to remember

    • People were less likely to find out I was taking PrEP

    • Other, specify:

    • Decline to answer

[Selected multiple options=I19, otherwise I20]


I19. Please rank the reasons why you started using [insert PrEP method started] in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I18] rank order list


I20. Why did you stop taking this medication, [pull answer #2 from I9]? (Choose all that apply)

    • I wanted to switch to a different kind of PrEP

    • I couldn't afford it anymore

    • I didn’t think that I was at risk for HIV anymore

    • My insurance would not cover it, or I lost my insurance

    • I didn't want to keep taking a pill every day

    • My parent(s) or guardian(s) found out and made me stop

    • I kept forgetting to take my pill

    • I had trouble getting to follow-up appointments

    • I had issues getting PrEP or with the pharmacy

    • I was having side effects

    • People reacted negatively when they found out I was taking PrEP

    • I was worried about the long term effects of PrEP on my health

    • I had a medical problem that made it unsafe to continue taking PrEP

    • I started using condoms all of the time

    • I couldn’t take the medication (tasted bad, pill was too big)

    • Other, please specify:

    • Decline to answer


I21. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, with 1 being the most important reason you stopped, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I20] rank order list

    • Decline to answer


[If E3=No, skip to I29]

I22. What kind of PrEP are you considering starting? [Should only be able to choose one response.]



Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer


I23. When are you planning on possibly restarting PrEP. It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


I24. Why are you considering restarting PrEP? (Choose all that apply)

    • I’m having sex with or thinking about having sex with someone who is living with HIV

    • I’m having sex with or thinking about having sex with someone whose HIV status I don’t know

    • I want to be in control of my sexual health

    • I want to reduce my anxiety around sex

    • I want to increase my sexual satisfaction and intimacy

    • I want to be safe and healthy

    • I want to have a better future

    • I am having sex with multiple partners

    • I don’t always use condoms (or don’t like using them)

    • My partner won’t use condoms

    • I had a previous HIV scare

    • My health care provider recommended it

    • I was recently diagnosed with a sexually transmitting infection (STI)

    • Many people in my community take PrEP

    • Other, please specify:

    • Decline to answer

[Selected multiple options=I25, otherwise I26]


I25. Please rank the reasons why you are considering restarting PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I24] rank order list

    • Decline to answer


I26. Who knows that you are considering restarting PrEP? (Check all that apply)

    • Family member(s)

    • Friend(s)

    • Romantic partner(s)

    • Sex partner(s)

    • Health care provider (other than your PrEP provider)

    • Other(s), please specify

    • No one

    • Decline to answer


I27. Why are you unsure about whether you want to restart PrEP? Select all that apply.

    • I’m concerned about potential side effects

    • I don’t know if I want to use this type of PrEP [pipe in type from I12]

    • I’m not at risk for HIV

    • My insurance might not cover it or I lost my insurance

    • I don’t want my parent(s) or guardian(s) to find out I’m taking PrEP

    • It will be hard to get to follow-up appointments

    • People might react negatively if they find out I’m taking PrEP

    • I’m using condoms all the time

    • Other, please specify:

    • Decline to answer


I28. Please rank the reasons why you are unsure about restarting PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I17] rank order list

    • Decline to answer


[Only if E3=No; otherwise skip to I33]

I29. What are the reasons why you are not planning to restart PrEP at this time. Select all that apply.

    • I can’t afford it right now

    • I’m not at risk for HIV

    • My insurance will not cover it, or I don’t have insurance

    • I don’t want to take a pill every day

    • My parent(s) or guardian(s) will find out

    • I will forget to take my pill

    • I will have trouble getting to follow-up appointments

    • I will have issues getting PrEP or with the pharmacy

    • I am concerned about side effects

    • People will react negatively if they find out I’m taking PrEP

    • I am worried about the long term effects of PrEP on my health

    • I have a medical problem that makes it unsafe to take PrEP

    • I use condoms all of the time

    • Other, please specify:

    • Decline to answer


I30. Please rank the reasons why you do not plan to restart PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I29] rank order list

    • Decline to answer


I31. What would motivate you to restart PrEP? Select all that apply.

    • Having sex with someone who is living with HIV

    • Having sex with someone whose HIV status is unknown

    • Having sex with multiple partners

    • Not using condoms regularly or partner(s) do/does not want to use condoms

    • Receiving more information on the safety of [pipe in PrEP modality from I12]

    • Receiving more information on the effectiveness of [pipe in PrEP modality from I12]

    • More people in your community start using PrEP

    • It was easier to attend follow-up visits

    • Fewer follow-up appointments/labs needed

    • Having better health insurance

    • Support from family and/or friends

    • Support from medical providers

    • Support from my partner(s)

    • Other, specify:

    • Decline to answer


I32. Please rank the reasons what would motivate you to restart PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from I21] rank order list

    • Decline to answer


Now we want to ask you a few questions about your feelings related to previously taking PrEP. [I33 and I34 only 3, 9, and 15M surveys]

I33. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer


I have been rejected romantically for taking PrEP







I have been judged by a health care provider because of taking PrEP







I have been blamed by people in my community for spreading HIV through PrEP use







I have been slut-shamed for taking PrEP (or told that I am a "Truvada or Descovy slut/whore")







I have been unfairly discriminated against for taking PrEP







I have been yelled at or scolded because of taking PrEP







I have experienced physical violence because of taking PrEP








Now we want to ask you a few questions about your feelings related to possibly restarting PrEP.


I34. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I worry people will assume I sleep around if they know I take PrEP







I worry people will assume that I am HIV+ if they know I take PrEP







I worry people will think my partner(s) are HIV+ if they know I take PrEP







I worry about listing PrEP as one of my current medications during doctor appointments








I feel ashamed to tell other people I am taking PrEP







I worry people will think I am a bad person if they know I take PrEP







I worry people will think I am gay if they know I take PrEP







I worry my friends will find out that I take PrEP







I worry my family will find out that I take PrEP







I worry my sex partners will find out that I take PrEP







I think people will give me a hard time if I tell them I take PrEP







I think people will judge me if they know I am taking PrEP









I35. What do you think about how effective PrEP is at preventing someone from getting HIV, when it is taken the way it is prescribed?

    • Very/completely effective

    • Somewhat effective

    • Minimally effective

    • Not at all effective

    • Decline to answer


I36. What do you think about whether PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?

    • HIV PrEP has no effect on other STIs

    • HIV PrEP helps to prevent other STIs

    • Decline to answer


I37. To what extent do you think restarting PrEP would affect your likelihood to use condoms?

    • Significantly less likely

    • Somewhat less likely

    • Will not change

    • Somewhat more likely

    • Significantly more likely

    • Decline to answer

  1. Never used PrEP: not starting/unsure


[J1-J7: Unsure about starting] [J8-J11: Not planning to start]



[If E4=No, skip to J8]

J1. What kind of PrEP are considering starting? [Should only be able to choose one response]


Daily oral PrEP

A pill taken daily

Truvada®, Descovy®, emtricitabine/tenofovir disoproxil fumarate, emtricitabine/tenofovir alafenamide



Intermittent oral PrEP

A pill taken before and after sex. Also called PrEP 2-1-1, on-

demand, intermittent, or event-driven PrEP

Truvada®, emtricitabine/tenofovir disoproxil fumarate



Injectable PrEP

A shot, an injection given by a doctor/health care provider

Apretude®, cabotegravir


image2.png


    • Other (please specify):

    • Decline to answer


J2. When are you planning on possibly starting PrEP. It’s OK if you don’t know the exact date. Please provide your best guess.

[Month] [Year]

Decline to answer


J3. Why are you considering starting PrEP? (Choose all that apply)

    • I’m having sex with or thinking about having sex with someone who is living with HIV

    • I’m having sex with or thinking about having sex with someone whose HIV status I don’t know

    • I want to be in control of my sexual health

    • I want to reduce my anxiety around sex

    • I want to increase my sexual satisfaction and intimacy

    • I want to be safe and healthy

    • I want to have a better future

    • I am having sex with multiple partners

    • I don’t always use condoms (or don’t like using them)

    • My partner won’t use condoms

    • I had a previous HIV scare

    • My health care provider recommended it

    • I was recently diagnosed with a sexually transmitting infection (STI)

    • Many people in my community take PrEP

    • Other, please specify:

    • Decline to answer


[Selected multiple options=J4, otherwise J5]


J4. Please rank the reasons why you are considering starting PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from J3] rank order list

    • Decline to answer


J5. Who knows that you are considering starting PrEP? (Check all that apply)

    • Family member(s)

    • Friend(s)

    • Romantic partner(s)

    • Sex partner(s)

    • Health care provider (other than your PrEP provider)

    • Other(s), please specify

    • No one

    • Decline to answer


J6. Why are you unsure about whether you want to start PrEP? Select all that apply.

    • I’m concerned about potential side effects

    • I don’t know if I want to use this type of PrEP [pipe in type from J4]

    • I’m not at risk for HIV

    • My insurance might not cover it or I lost my insurance

    • I don’t want my parent(s) or guardian(s) to find out I’m taking PrEP

    • It will be hard to get to follow-up appointments

    • People might react negatively if they find out I’m taking PrEP

    • I’m using condoms all the time

    • Other, please specify:

    • Decline to answer


J7. Please rank the reasons why you are unsure about staring PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from J6] rank order list [If E4=No; otherwise skip to J12]

J8. What are the reasons why you are not planning to start PrEP at this time. Select all that apply.

    • I can’t afford it right now

    • I’m not at risk for HIV

    • My insurance will not cover it, or I don’t have insurance

    • I don’t want to take a pill every day

    • My parent(s) or guardian(s) will find out

    • I will forget to take my pill

    • I will have trouble getting to follow-up appointments

    • I will have issues getting PrEP or with the pharmacy

    • I am concerned about side effects

    • People will react negatively if they find out I’m taking PrEP

    • I am worried about the long term effects of PrEP on my health

    • I have a medical problem that makes it unsafe to take PrEP

    • I use condoms all of the time

    • Other, please specify:

    • Decline to answer


J9. Please rank the reasons why you do not plan to start PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from J8] rank order list

    • Decline to answer


J10. What would motivate you to start PrEP? Select all that apply.

    • Having sex with someone who is living with HIV

    • Having sex with someone whose HIV status is unknown

    • Having sex with multiple partners

    • Not using condoms regularly or partner(s) do/does not want to use condoms

    • Receiving more information on the safety of [pipe in PrEP modality from I12]

    • Receiving more information on the effectiveness of [pipe in PrEP modality from I12]

    • More people in your community start using PrEP

    • It was easier to attend follow-up visits

    • Fewer follow-up appointments/labs needed

    • Having better health insurance

    • Support from family and/or friends

    • Support from medical providers

    • Support from my partner(s)

    • Other, specify:

    • Decline to answer


J11. Please rank the reasons what would motivate you to start PrEP in order of importance, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

    • [Answers from J10] rank order list

    • Decline to answer


Now we want to ask you a few questions about your feelings related to possibly starting PrEP. [J12 only 3, 9, and 15M surveys]

J12. Please select how much you agree with the following statements:


Strongly Agree

Agree

Neither Agree nor Disagree

Disagree

Strongly Disagree

Decline to answer

I worry people will assume I sleep around if they know I take PrEP







I worry people will assume that I am HIV+ if they know I take PrEP







I worry people will think my partner(s) are HIV+ if they know I take PrEP







I worry about listing PrEP as one of my current medications during doctor appointments







I feel ashamed to tell other people I am taking PrEP







I worry people will think I am a bad person if they know I take PrEP







I worry people will think I am gay if they know I take PrEP







I worry my friends will find out that I take PrEP







I worry my family will find out that I take PrEP







I worry my sex partners will find out that I take PrEP







I think people will give me a hard time if I tell them I take PrEP







I think people will judge me if they know I am taking PrEP









J13. What do you think about how effective PrEP is at preventing someone from getting HIV, when it is taken the way it is prescribed?

    • Very/completely effective

    • Somewhat effective

    • Minimally effective

    • Not at all effective

    • Decline to answer


J14. What do you think about whether PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?

    • HIV PrEP has no effect on other STIs

    • HIV PrEP helps to prevent other STIs

    • Decline to answer


J15. To what extent do you think taking PrEP will affect your likelihood to use condoms?

    • Significantly less likely

    • Somewhat less likely

    • Will not change

    • Somewhat more likely

    • Significantly more likely

    • Decline to answer


  1. PrEP Choices [All follow-up visits]


[If F1, G1, H1 = Daily oral PrEP then K1-K2]

[If F1, G1, H1 = Intermittent oral PrEP then K3-K4] [If F1, G1, H1 = Injectable PrEP then K5-K6]

[If F1, G1, H1 = Other or Decline to answer then K13]


[If I22, J1 = Daily oral PrEP then K7-K8]

[If I22, J1 = Intermittent oral PrEP then K9-K10] [If I22, J1 = Injectable PrEP then K11-K12]

[If I22, J1 = Other or Decline to answer then K13]


K1. Why have you chosen to use daily oral PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to get shots/injections

  • I don’t want to have to attend an appointment every two months for a shot/injection

  • With a shot/injection I would be concerned about long-acting side effects (that is, side effects that don’t go away for a long time because I received an injection)

  • I don’t think I would remember to take intermittent PrEP as prescribed

  • I don’t think intermittent PrEP would work for me because it is difficult to predict when I’m going to have sex

  • I prefer to have a regular routine of taking PrEP

  • Other, please specify

  • Decline to answer


[Selected multiple options=K2, otherwise K13]


K2. Please rank the reasons why you have chosen daily oral PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K1] rank order list

  • Decline to answer


Shape4


K3. Why have you chosen to use intermittent oral PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to get shots/injections

  • I don’t want to have to attend an appointment every two months for a shot/injection

  • With a shot/injection I would be concerned about long-acting side effects (that is, side effects that don’t go away for a long time because I received an injection)

  • I don’t want to have to take a pill every day

  • I think it is easier to take PrEP only when I need it

  • Intermittent PrEP is less expensive

  • Other, please specify

  • Decline to answer


[Selected multiple options=K4, otherwise Section K13]


K4. Please rank the reasons why you have chosen intermittent oral PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K3] rank order list

  • Decline to answer


Shape5


K5. Why have you chosen to use injectable PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to take a pill every day

  • I don’t think I would remember to take daily oral PrEP the way it is prescribed

  • I’m concerned that someone would find out I use PrEP if I had to take pills

  • I don’t think I would remember to take intermittent PrEP as prescribed

  • I don’t think intermittent PrEP would work for me because it is difficult to predict when I’m going to have sex

  • Other, please specify

  • Decline to answer


[Selected multiple options=K6, otherwise Section K14]


K6. Please rank the reasons why you have injectable PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K5] rank order list

  • Decline to answer


K7. Why are you considering daily oral PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to get shots/injections

  • I don’t want to have to attend an appointment every two months for a shot/injection

  • With a shot/injection I would be concerned about long-acting side effects (that is, side effects that don’t go away for a long time because I received an injection)

  • I don’t think I would remember to take intermittent PrEP as prescribed

  • I don’t think intermittent PrEP would work for me because it is difficult to predict when I’m going to have sex

  • I prefer to have a regular routine of taking PrEP

  • Other, please specify

  • Decline to answer


[Selected multiple options=K8, otherwise K13]


K8. Please rank the reasons why you are considering daily oral PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K7] rank order list

  • Decline to answer


Shape6


K9. Why are you considering intermittent oral PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to get shots/injections

  • I don’t want to have to attend an appointment every two months for a shot/injection

  • With a shot/injection I would be concerned about long-acting side effects (that is, side effects that don’t go away for a long time because I received an injection)

  • I don’t want to have to take a pill every day

  • I think it is easier to take PrEP only when I need it

  • Intermittent PrEP is less expensive

  • Other, please specify

  • Decline to answer


[Selected multiple options=K10, otherwise Section K13]


K10. Please rank the reasons why you are considering intermittent oral PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K9] rank order list

  • Decline to answer


Shape7


K11. Why are you considering injectable PrEP, rather than a different kind of PrEP? (Choose all that apply)

  • My doctor/health care provider recommended this kind for me

  • I know people who use this kind of PrEP

  • I think this kind of PrEP is more effective than other kinds

  • I think this kind of PrEP is safer than other kinds

  • I don’t want to have to take a pill every day

  • I don’t think I would remember to take daily oral PrEP the way it is prescribed

  • I’m concerned that someone would find out I use PrEP if I had to take pills

  • I don’t think I would remember to take intermittent PrEP as prescribed

  • I don’t think intermittent PrEP would work for me because it is difficult to predict when I’m going to have sex

  • Other, please specify

  • Decline to answer


[Selected multiple options=K12, otherwise Section K14]

K12. Please rank the reasons why you are considering injectable PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from K11] rank order list

  • Decline to answer


[If F1, G1, H1 = Injectable PrEP then Skip to K14]

K13. Compared to taking oral PrEP pills, how difficult do you think it would be to use injectable PrEP as prescribed (getting your PrEP shot every two months on time)?

  • Injectable PrEP would be LESS difficult to take as prescribed, compared to oral PrEP

  • SAME, the type of PrEP would not change my ability to take PrEP as prescribed

  • Injectable PrEP would be MORE difficult to take as prescribed, compared to oral PrEP

  • Decline to answer


[If F1, G1, H1 = Intermittent PrEP then Skip to Section L]

K14. Compared to [pipe in current PrEP modality], how difficult do you think it would be to use on-demand PrEP (taking two pills 2-24 hours before sex, one pill 24 hours after the first dose, and one pill 24 hours after the second dose)?

  • On-demand PrEP would be LESS difficult to take, compared to [pipe in current PrEP modality]

  • SAME, on-demand PrEP would not change my ability to take PrEP

  • On-demand PrEP would be MORE difficult to [pipe in current PrEP modality]

  • Decline to answer


  1. PREP ADHERENCE AND BARRIERS

[All follow-up visits]


[If F1, G1, H1 = Daily oral PrEP then L1-L5]

[If F1, G1, H1 = Intermittent oral PrEP then L6-L10] [If F1, G1, H1 = Injectable PrEP then L11-L16]


[If I22, J1 = Daily oral PrEP then L5]

[If I22, J1 = Intermittent oral PrEP then L10] [If I22, J1 = Injectable PrEP then L16]


[ALL PARTICIPANTS SHOULD ANSWER L17 REGARDLESS OF PREP USE]



L1. In the past 7 days, how many days did you take PrEP? Text box: 1-7

L2. In the past 3 months, what percent of the time did you take your PrEP as prescribed (once a day)? Use the scale below. 0% would mean ‘NONE’ of the time and 100% would mean ‘ALL’ of the time. If you are unsure, make a guess.


% medication taken:

0 [ ] 100

Decline to answer


L3. What has gotten in the way of you taking your PrEP on a daily basis? (Choose all that apply)

  • I have not had any trouble taking my regular PrEP doses

  • Couldn't get my pills at the drug store or pharmacy

  • Ran out of my prescription and never started again

  • Did not have health insurance to pay for the prescriptions

  • Made me sick to my stomach or tasted bad

  • Forgot to take my pill

  • I got a headache, rash, or other physical symptom

  • It got in the way of my daily schedule

  • Didn't feel like taking it, needed a break

  • Change in living situation/moved

  • Worried that someone will think I have HIV

  • Got sick with another illness, wasn't feeling well (e.g., cold, flu, etc.)

  • Don't think I need the pills anymore, I can stay healthy without them

  • Family and/or friends didn't help me remember

  • Family and/or friends told me I shouldn't take them

  • Nowhere to keep the pills at school or work

  • Didn't understand why I had to take the pills

  • I kept getting sick even when I did take the pills

  • Taking it reminded me of HIV

  • Other, please specify

  • Decline to answer


[Selected multiple options=L4, otherwise L5]


L4. Please rank the things that have gotten in the way of taking PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from L3] rank order list

  • Decline to answer


L5. We are interested in how you feel about the following statements. Please answer by indicating your confidence about each statement on a scale from 1 (not confident) to 10 (totally confident).

How confident are you that you can...


Take PrEP on a weekend:

Take PrEP on a weekday

Take PrEP when dealing with schedule changes: Take PrEP while traveling:

Take PrEP when out with friends:

Take PrEP at work/school:

Take PrEP when having medication side effects: Take PrEP when having a crisis:

Take PrEP when drinking or using drugs: Keep your PrEP medical appointments: Follow a plan for taking PrEP:

Decline to answer


[Skip to Section L18]

Shape8


L6. In the past 3 months, what percent of the time did you take your full dose of intermittent PrEP as prescribed (i.e., before & after any condomless anal sex)? A full dose includes the pills taken before sex and after sex as in the figure. Use the scale below. 0% would mean ‘NONE’ of the time and 100% would mean ‘ALL’ of the time. If you are unsure, make a guess.


% medication taken:

0 [ ] 100


  • I did not have any condomless anal sex.

  • Decline to answer Figure.


Shape9



[IF L6 =100%, skip to L10]

L7. In the past 3 months, what percent of the time did you do the following before having any condomless anal sex? Note: Your responses should add up to 100%. If any of the categories do not apply to you, please enter “0”. [Add logic so that these responses must sum to 100%]

  • Did not take any of the 4 pills: %

  • Took 1 of the 4 pills: %

  • Took 2 of the 4 pills: %

  • Took 3 of the 4 pills: %

  • Decline to answer


L8. What has gotten in the way of you taking your intermittent PrEP as prescribed (i.e., before & after having any condomless anal sex)? (Choose all that apply)

  • I have not had any trouble taking my PrEP doses

  • Couldn't get my pills at the drug store or pharmacy

  • Ran out of my prescription and never started again

  • Forgot to take my pills before sex

  • Forgot to take my pills after sex

  • Didn’t know I was going to have sex and I didn’t have any PrEP with me

  • Didn’t think I needed to take all the pills

  • Did not have health insurance to pay for the prescriptions

  • Made me sick to my stomach or tasted bad

  • I got a headache, rash, or other physical symptom

  • Didn't feel like taking it, needed a break

  • Change in living situation/moved

  • Worried that someone will think I have HIV

  • Got sick with another illness, wasn't feeling well (e.g., cold, flu, etc.)

  • Don't think I need the pills anymore, I can stay healthy without them

  • Family and/or friends didn't help me remember

  • Family and/or friends told me I shouldn't take them

  • Nowhere to keep the pills at school or work

  • Didn't understand why I had to take the pills

  • I kept getting sick even when I did take the pills

  • Taking it reminded me of HIV

  • Other, please specify

  • Decline to answer


[Selected multiple options=L8, otherwise L10]


L9. Please rank the things that have gotten in the way of taking PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from L7] rank order list

  • Decline to answer


L10. We are interested in how you feel about the following statements. Please answer by indicating your confidence about each statement on a scale from 1 (not confident) to 10 (totally confident).

How confident are you that you can...


Take PrEP on a weekend if needed: Take PrEP on a weekday if needed:

Take PrEP when dealing with schedule changes: Take PrEP while traveling if needed:

Take PrEP when out with friends if needed: Take PrEP at work/school if needed:

Take PrEP when having medication side effects: Take PrEP when having a crisis:

Take PrEP when drinking or using drugs if needed: Keep your PrEP medical appointments:

Follow a plan for taking PrEP:

Decline to answer


[Skip to L18]

Shape10


L11. When was the date of your last PrEP injection? (If exact date is unknown, then use the 1st of the month of injection).

dd/mm/yyyy Decline to answer

L12. When is the date of your next PrEP injection? (If exact date is unknown, then use the 1st of the month of injection).

dd/mm/yyyy Decline to answer



L13. In the past 3 months, have you missed any injections? [Yes=L14, otherwise L15]

  • No

  • Yes

  • Decline to answer


L14. What has gotten in the way of you getting your PrEP injections? (Choose all that apply)

  • I have not had any trouble getting my regular PrEP injections

  • Couldn't get an injection appointment

  • Appointment location was too far away or couldn’t get transportation

  • Dissatisfied with quality of clinic services

  • Negative attitudes held by clinic staff

  • Worried about paying for the injection

  • Irritation at the injection site

  • I had some other physical symptom

  • Forgot to schedule or attend my appointment

  • It got in the way of my schedule

  • Didn't feel like taking it, needed a break

  • Change in living situation/moved

  • Worried that someone will think I have HIV

  • Got sick with another illness, wasn't feeling well (e.g., cold, flu, etc.)

  • Don't think I need the injections anymore, I can stay healthy without them

  • Family and/or friends didn't help me remember

  • Family and/or friends told me I shouldn't get them

  • Didn't understand why I had to get the injections

  • I kept getting sick even when I did get the injections

  • Getting them reminded me of HIV

  • Other, please specify

  • Decline to answer


[Selected multiple options=L15, otherwise L16]


L15. Please rank the things that have gotten in the way of taking PrEP, with 1 being the most important reason, 2 being the next most important reason, all the way to the least important reason.

  • [Answers from L14] rank order list

  • Decline to answer

L16. We are interested in how you feel about the following statements. Please answer by indicating your confidence about each statement on a scale from 1 (not confident) to 10 (totally confident).

How confident are you that you can...


Keep your injectable PrEP appointments:

Follow a plan for getting your PrEP:

Decline to answer


[ALL PARTICIPANTS]

[L17 only 3, 9, and 15M]

L17. Please rate how much each of the following items influences your decision about taking PrEP.


Not at all

A little bit

A

moderate amount

A lot

Decline to answer

Having to talk to a healthcare provider about my sex life






Having to talk to a healthcare provider about PrEP






Friends finding out that I am on PrEP






Sexual partner(s) finding out that I am on PrEP






Family members finding out that I am on PrEP






The long-term effects of PrEP on my health






The possibility that PrEP might not provide complete protection against HIV






The possibility that if I become HIV positive, certain medications won’t work






The potential side effects of PrEP






Having to remember to take a pill or get an injection






Getting transportation to PrEP appointments/labs






Returning for PrEP follow-up appointments and labs






Getting a PrEP prescription refilled






Using insurance to get coverage for PrEP costs






Getting the costs of PrEP covered (including office visits or office visit co-pays, lab costs, transportation costs)








  1. TECHNOLOGY USE AND ONLINE PARTNER SEEKING BEHAVIOR

[6, 12, and 18M surveys only] [M11 only 12M survey]

In this section, we will ask questions about your devices and your social media and internet use.


M1. On average, how many hours a day do you spend on the Internet, other than for work or school? (Round to the nearest hour) [integer 0-24]

Decline to answer


M2. Which of the following devices do you own? (Check all that apply) [If cell phone then M4, if smartphone then M3, otherwise M4]

    • Cell phone (basic mobile phone for calling or texting; does not have internet access, apps, or a touch screen)

    • Smartphone (advanced mobile phone with internet access, apps, and a touch screen)

    • Desktop computer

    • Laptop computer

    • Tablet computer

    • E-book reader

    • Fitness tracker or smart watch

    • Other, please specify

    • Decline to answer


M3. How often do you use apps on your smartphone (for example: TikTok, Instagram, dating apps, banking apps, Snapchat)?

    • More than once a day

    • About once a day

    • A few times a week

    • About once a week

    • Less than once a week

    • I do not use apps on my phone

    • Decline to answer


M4. Do you regularly share your phone with one or more other people (such as a partner, family member, or friends)?

    • Yes

    • No

    • Decline to answer


M5. What kind of phone service do you have?

    • I have a prepaid account

    • I have a monthly contract

    • I’m on a shared plan

    • Other, please specify

    • Decline to answer


M6. How many times in the past 3 months has your phone been disconnected, because the bill was not paid, or because your phone was lost or stolen?

[Never=M8, otherwise M7]

    • Never

    • Once

    • Twice

    • 3 to 5 times

    • More than 5 times

    • Other, please specify

    • Decline to answer


M7. The last time your phone was disconnected, for how long was it disconnected?

    • 1 day or less

    • 2 to 7 days

    • 1 to 4 weeks

    • 1 month or more

    • Other, please specify

    • Decline to answer


M8. How often do you use websites or apps for the following reasons:


Never

Rarely

Sometimes

Often

Decline to answer

Make new friends






Chat with friends






Find a date






Meet partners for sex






Look for work opportunities






Track your health behaviors (diet, exercise, medication management, etc.)






Create event reminders (take a daily pill, exercise, etc.)







M9. What are the 3 social media platforms you use most often?

    • YouTube

    • LinkedIn

    • Reddit

    • WhatsApp

    • Snapchat

    • Twitter

    • Facebook

    • Instagram

    • TikTok

    • Other, please specify

    • Decline to answer


M10. [Ybarra scale] In the past 3 months, have you searched online for any of the following

topics for yourself? (Check all that apply)

    • Sexuality or sexual attraction

    • How to have sex or sexual positions

    • HIV/AIDS or other sexually transmitted diseases

    • Condoms or other types of birth control

    • PrEP (Pre-Exposure Prophylaxis)

    • PEP (Post Exposure Prophylaxis)

    • Fitness or weight issues

    • Drugs or alcohol

    • Violence or abuse

    • Medications or medication side effects

    • Depression, anxiety, or suicide

    • None

    • Decline to answer [M11 only 12M survey]

M11. Please indicate your agreement with the following statements



Strongly Agree


Agree

Neither Agree nor Disagree


Disagree

Strongly Disagree

Decline to Answer

I know what health resources are available on the Internet.

( )

( )

( )

( )

( )

( )

I know how to find helpful health resources on the Internet.

( )

( )

( )

( )

( )

( )

I know how to use the Internet to answer my questions about health.

( )

( )

( )

( )

( )

( )

I know how to use the health information I find on the Internet to help me.

( )

( )

( )

( )

( )

( )


I have the skills I need to evaluate the health resources I find on the Internet.

( )

( )

( )

( )

( )

( )

I can tell high quality health resources from low quality health resources on the Internet.

( )

( )

( )

( )

( )

( )

I feel confident in using information from the Internet to make health decisions.

( )

( )

( )

( )

( )

( )

I know where to find helpful health resources on the Internet.

( )

( )

( )

( )

( )

( )



  1. RELATIONSHIPS AND SEXUAL HEALTH PRIORITIES

[ALL FOLLOW-UP SURVEYS]


N1. How do you define your primary relationship status? [Routing question, may not skip]

    • Single [Skip to Section O]

    • Casually dating/friends with benefits [Skip to Section O]

    • In a relationship (Have a partner/partners or spouse)

    • Other, please specify [Skip to Section O]

    • Decline to answer [Skip to Section O]


[6, 12, 18 MONTH ONLY]

People have different sexual health priorities. For example, some people prioritize staying HIV- negative; others want to have as much fun as possible with their partners; others want to feel as close and connected to their partners as possible.


N2. For these next questions, we are interested in you and your primary romantic partner’s sexual health priorities. Thinking about you and your primary partner’s sexual health priorities, please indicate the extent to which you agree or disagree with the following statements.





Strongly Agree


Agree

Neither Agree nor Disagree


Disagree

Strongly Disagree

Decline to answer

I feel like my partner and I are “on the same page” in terms of the decisions we make about sexual health and risk

( )

( )

( )

( )

( )

( )

When it comes to sexual decision- making, I feel like my partner and I are “of the same mind”

( )

( )

( )

( )

( )

( )

Sometimes I feel like my priorities for my sexual health are incompatible with my partner’s goals

( )

( )

( )

( )

( )

( )

I’m confident that my partner and I generally share the same priorities when it comes to sexual health

( )

( )

( )

( )

( )

( )

Making sexual health decisions with my partner can be difficult because we have different priorities

( )

( )

( )

( )

( )

( )

  1. SEXUAL BEHAVIORS

[ALL FOLLOW-UP SURVEYS]


This set of questions will ask about your sexual behaviors. Sometimes sharing information about sexual behaviors can make people feel uncomfortable. We want you to remember that all this information is kept confidential and is collected only for research purposes. This information will help this study learn more about PrEP and HIV prevention. Please be as honest as possible. If you are unsure of any answers in this section, please make your best guess.


O1. In the past 3 months, how many sexual partners have you had sex with? [NumSexPartner] (range 0-99) (text field)

Decline to answer


[If NumSexPartner =0 then skip to Section P] [If NumSexPartner = 1 then O2-O5]

[If NumSexPartner > 1 then O6-O9]


[ANAL RECEPTIVE]

The following questions ask about your sexual behavior during the past 3 months. Our focus in this section will be exclusively on anal sex. Therefore, only include partners with whom you had anal sex.


O2. In the past 3 months, did you have receptive anal sex with this person (you were the bottom)? [ReceptiveAI]

[Yes = O3, otherwise O?]

  • Yes

  • No

  • Decline to answer


O3. About this person, did they put their penis in your rectum without a condom? [ReceptiveAINoCondom]

  • Yes

  • No

  • Decline to answer


O4. Regarding this person… [OneRecAIHIVStatus]

  • They told you they were HIV negative and you had no reason to doubt it. [Negative]

  • They told you they were HIV positive and they were undetectable

  • They told you they were HIV positive but did NOT say they were undetectable.

  • You were not completely sure of this person’s HIV status. [StatusUnknown]

  • Decline to answer


O5. Was this person using PrEP? [OneRecAIPrep]

  • Yes

  • No

  • I don’t know

  • Decline to answer


[Skip to O10]

Shape11


O6. In the past 3 months, with how many of these [NumSexPartner] people did you have

receptive anal sex (you were the bottom)? [ReceptiveAI]

(range 0-[NumSexPartner]) (fill-in) [If >0 then O7, otherwise O14] Decline to answer


O7. Of these [ReceptiveAI] people, how many put their penises in your rectum without a condom? [ReceptiveAINoCondom] (Range 0-[ReceptiveAI]) (fill-in)

Decline to answer


O8. Of the [ReceptiveAI] people you had receptive anal sex with, how many… (Please enter a number in each box. Enter 0 (zero) if none. Your answers must add up to [ReceptiveAI]).

  • Told you they were HIV negative and you had no reason to doubt it?

  • Told you they were HIV positive and they were undetectable?

  • Told you they were HIV positive but did NOT say they were undetectable.

  • Were you not completely sure of their HIV status?

  • Decline to answer



(TOTAL) [MultRecAIHIVTotal] This number must be the sum of the previous 3 responses, and should tally as the answers are populated. Validate that [MultRecUAIHIVTotal]

= [ReceptiveAI] Decline to answer



O9. To your knowledge, how many of these people were taking PrEP? [MultRecAIPrep] (range 0-[ReceptiveAI]) (fill-in)

Decline to answer



[Skip to O14]

Shape12


[ANAL INSERTIVE]


[If NumSexPartner = 1 then O10-O13] [If NumSexPartner > 1 then O14-O17]

O10. We have a few more questions about your sexual behavior with the person who was your anal sex partner in the past 3 months.


In the past 3 months, did you have insertive anal sex with this person (you were the top)? [InsertiveAI]

[Yes = O11, otherwise O18]

  • Yes

  • No

  • Decline to answer


O11. About this person, did you put your penis in their rectum without a condom?

[InsertiveAINoCondom]

  • Yes

  • No

  • Decline to answer


[Skip to O13 if already answered O4]

O12. Regarding this person… [OneRecAIHIVStatus]

  • They told you they were HIV negative and you had no reason to doubt it. [Negative]

  • They told you they were HIV positive and they were undetectable

  • They told you they were HIV positive but did NOT say they were undetectable.

  • You were not completely sure of this person’s HIV status. [StatusUnknown]

  • Decline to answer


[Skip to O18 if already answered O5]

O13. Was this person using PrEP? [OneRecAIPrep]

  • Yes

  • No

  • I don’t know

  • Decline to answer


[Skip to O18]

Shape13


O14. We have a few more questions about your sexual behavior with the people who were your anal sex partners in the past 3 months.


In the past 3 months, with how many of these [NumSexPartner] people did you have

insertive anal sex (you were the top)? [InsertiveAI] (range 0-[NumSexPartner]) (fill-in) [If

>0 then O15, otherwise O22] Decline to answer


O15. Of these [InsertiveAI] people, how many of their rectums did you put your penis into without a condom? [InsertiveAINoCondom] (range 0-[InsertiveAI]) (fill-in) Decline to answer



O16. Of the [InsertiveAI] people you had insertive anal sex with, how many… (Please enter a number in each box. Enter 0 (zero) if none. Your answers must add up to [InsertiveAI]).

  • Told you they were HIV negative and you had no reason to doubt it?

  • Told you they were HIV positive and they were undetectable?

  • Told you they were HIV positive but did NOT say they were undetectable.

  • Were you not completely sure of their HIV status?

  • Decline to answer


(TOTAL) [MultInsAIHIVTotal] This number must be the sum of the previous 3 responses, and should tally as the answers are populated. Validate that [MultInsUAIHIVTotal] = [InsertiveAI]

Decline to answer



O17. To your knowledge, how many of these people were taking PrEP? [MultRecAIPrep] (range 0-[InsertiveAI]) (fill-in)

Decline to answer



[Skip to O22]

Shape14


[VAGINAL]


We will now ask you questions about your experience with vaginal sex in the past 3 months. Our focus in this section is exclusively on vaginal sex.


[If NumSexPartner = 1 then O18-O21] [If NumSexPartner > 1 then O22-O25]


O18. In the past 3 months, did you have vaginal sex with this person (did you put your penis in their vagina or neovagina)? [VI]

[Yes = O19, otherwise ]

  • Yes

  • No

  • Decline to answer


O19. About this person, did you put your penis in their vagina (or neovagina) without a condom? [InsertiveVINoCondom]

  • Yes

  • No

  • Decline to answer

O20. Regarding this person… [OneRecAIHIVStatus]

  • They told you they were HIV negative and you had no reason to doubt it. [Negative]

  • They told you they were HIV positive and they were undetectable

  • They told you they were HIV positive but did NOT say they were undetectable.

  • You were not completely sure of this person’s HIV status. [StatusUnknown]

  • Decline to answer


O21. Was this person using PrEP? [OneRecAIPrep]

  • Yes

  • No

  • I don’t know

  • Decline to answer


[Skip to routing before O26]

Shape15


O22. In the past 3 months, with how many sexual partners did you have vaginal sex (you put your penis in someone’s vagina or neovagina)? [VI] (range 0-[NumVagSexPartner]) (fill-in) [If >0 then O23, otherwise routing before O26]

Decline to answer


O23. Of these [InsertiveVI] people, how many of their vaginas (or neovaginas) did you put your penis into without a condom? [InsertiveVINoCondom] (range 0-[InsertiveAI]) (fill-in) Decline to answer


O24. Of the [InsertiveVI] people you had vaginal sex with, how many… (Please enter a number in each box. Enter 0 (zero) if none. Your answers must add up to [InsertiveVI]).

  • Told you they were HIV negative and you had no reason to doubt it?

  • Told you they were HIV positive and they were undetectable?

  • Told you they were HIV positive but did NOT say they were undetectable.

  • Were you not completely sure of their HIV status?

  • Decline to answer


(TOTAL) [MultInsVIHIVTotal] This number must be the sum of the previous 3 responses, and should tally as the answers are populated. Validate that [MultInsVIHIVTotal] = [InsertiveVI]

Decline to answer



O25. To your knowledge, how many of these people were taking PrEP? [MultRecVIPrep] (range 0-[InsertiveVI]) (fill-in)

Decline to answer



[If O2 = NO, N6 = 0, O10 = NO, O14 = 0 then no anal sex reported, skip to O27]


O26. Now we are going to ask you to think back to any anal sex you had in the past 2 months (8 weeks). You may refer back to your sex tracker in the app if that would be helpful. If you are unsure of any answers below, please make your best guess.


Thinking back to the past week, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer



Thinking back to 2 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer



Thinking back to 3 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer



Thinking back to 4 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer



Thinking back to 5 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer


Thinking back to 6 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer


Thinking back to 7 weeks ago, [pipe in date range here with calendar]: How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer


Thinking back to 8 weeks ago, [pipe in date range here with calendar]:

How many times did you have any anal sex?

How many times did you have any condomless anal sex?

Decline to answer


O27. In the past 3 months, have you had any kind of sex with someone in exchange for things you needed (like money, drugs, food, shelter, etc.)?

  • No

  • Yes

  • Decline to answer


O28. In the past 3 months, have you given anything to someone else (like money, drugs, food, shelter, etc.) in exchange for them having sex with you?

  • No

  • Yes

  • Decline to answer


  1. SUBSTANCE USE

[ALL FOLLOW-UP SURVEYS]


The next questions refer to your alcohol and drug use. We know that this information is personal. Please remember all this information is kept confidential and is collected only for research purposes.


[P1 if previous visit was missed, otherwise skip to P2]

P1. Which of the following drugs have you used since your previous survey on [pipe in date] (non-medical use only)? (Choose all that apply)

[If None then skip to Section Q]

    • Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)

    • Alcohol (beer, wine, spirits, etc.)

    • Cannabis (marijuana, pot, weed, edibles, hash, synthetic cannabis, vaping, etc.)

    • Cocaine (coke, crack, etc.)

    • Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)

    • Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)

    • Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)

    • Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)

    • Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)

    • Other, please specify

    • None

    • Decline to answer


P2. Which of the following drugs have you used in the past 3 months (non-medical use only)? (Choose all that apply)

[If None then skip to Section Q]

    • Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)

    • Alcohol (beer, wine, spirits, etc.)

    • Cannabis (marijuana, pot, weed, edibles, hash, synthetic cannabis, vaping, etc.)

    • Cocaine (coke, crack, etc.)

    • Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)

    • Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)

    • Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)

    • Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)

    • Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)

    • Other, please specify

    • None

    • Decline to answer


P3. In the past three months, how often have you used… [only pipe in substances from above]

[If all Never then skip to P7]


Never

Once or twice

Monthly

Weekly

Daily or almost daily

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)







Alcohol (beer, wine, spirits, etc.)







Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)







Cocaine (coke, crack, etc.)







Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)







Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)







Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)







Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)







Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)







Other, please specify







P4. During the past three months, how often have you had a strong desire or urge to use…


Never

Once or twice

Monthly

Weekly

Daily or almost daily

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)







Alcohol (beer, wine, spirits, etc.)







Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)







Cocaine (coke, crack, etc.)







Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)







Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)







Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)







Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)







Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)







Other, please specify








P5. During the past three months, how often has your use of [pipe in substances from last 3 mo] led to health, social, legal or financial problems?


Never

Once or twice

Monthly

Weekly

Daily or almost daily

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)







Alcohol (beer, wine, spirits, etc.)







Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)







Cocaine (coke, crack, etc.)







Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)








Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)







Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)







Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)







Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)







Other, please specify








P6. During the past three months, how often have you failed to do what was normally expected of you because of your use of [pipe in substances from last 3 mo]?


Never

Once or twice

Monthly

Weekly

Daily or almost daily

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)







Alcohol (beer, wine, spirits, etc.)







Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)







Cocaine (coke, crack, etc.)







Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)







Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)







Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)







Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)







Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)







Other, please specify







P7. In the past 3 months, has a friend or relative or anyone else expressed concern about your use of [pipe in substances EVER used from this survey and previous surveys]?


No, never

Yes, in the past 3 months

Yes, but not in the past 3 months

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)





Alcohol (beer, wine, spirits, etc.)





Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)





Cocaine (coke, crack, etc.)





Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)





Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)





Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)





Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)





Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)





Other, please specify






[Skip to P9 if P1 or P2 = “None”]

P8. In the past 3 months, have you tried to cut down on using [pipe in substances ever used] but failed?


No, never

Yes, in the past 3 months

Yes, but not in the past 3 months

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)





Alcohol (beer, wine, spirits, etc.)





Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)





Cocaine (coke, crack, etc.)





Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)





Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)






Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)





Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)





Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)





Other, please specify






P9. In the past 3 months, have you used any drug by injection (non-medical use only)?

  • No

  • Yes


[If P1 or P2 = “None” then skip to Section Q]

P10. During the past 30 days, did you use [pipe in substances ever used] immediately before or during sex? (Check all that apply.) [SexOnDrugs]


No, never

Yes

Decline to answer

Tobacco (cigarettes, chewing tobacco, cigars, e-cigarettes, etc.)




Alcohol (beer, wine, spirits, etc.)




Cannabis (marijuana, edibles, pot, weed, hash, synthetic cannabis, vaping, etc.)




Cocaine (coke, crack, etc.)




Amphetamines (speed, meth, diet pills, molly, ecstasy, Ritalin, Adderall, etc.)




Inhalants (poppers, nitrous, glue, petrol, paint thinner, etc.)




Sedatives, tranquilizers, or sleeping pills (valium, Serepax, Rohypnol, Xanax, Ambien, GHB, etc.)




Hallucinogens (LSD, acid, mushrooms, PCP, Ketamine, etc.)




Opioids (heroin, morphine, methadone, codeine, Oxycontin, Percocet, Vicodin, etc.)




Other, please specify






  1. MENTAL HEALTH

[ALL FOLLOW-UP SURVEYS]


Depression

PHQ-2/GAD-2 screener


Q1. Over the past 2 weeks, how often have you been bothered by any of the following problems?



Not at all (0)

Several days (1)

More than half the days (2)

Nearly every day (3)

Decline to answer

Little interest or pleasure in doing things






Feeling down, depressed, or hopeless






Feeling nervous, anxious or on edge






Not being able to stop or control worrying







[Those with a combined score > 3 on items 1 & 2 (PHQ-2) complete remaining 6 items of the PHQ-8.

Those with a combined score > 3 on items 3 & 4 (GAD-2) complete remaining 5 items of the GAD-7.]


PHQ-8

Q2. Over the past 2 weeks, how often have you been bothered by any of the following problems?



Not at all (0)

Several days (1)

More than half the days (2)

Nearly every day (3)

Decline to answer

Trouble falling or staying asleep, or sleeping too much?






Feeling tired or having little energy?






Poor appetite or overeating?






Feeling bad about yourself - or that you are a failure or have let yourself or your family down?






Trouble concentrating on things, such as reading the newspaper or watching television?






Moving or speaking so slowly that other people could have noticed, or the opposite - being so fidgety or restless that you have been moving around a lot more than usual?







Anxiety GAD-7


Q3. Over the past 2 weeks, how often have you been bothered by any of the following problems:



Not at all (0)

Several days (1)

More than half the days (2)

Nearly every day (3)

Decline to answer

Worrying too much about different things?






Trouble relaxing?






Being so restless that it is hard to sit still?






Becoming easily annoyed or irritable?






Feeling afraid as if something awful might happen?








  1. EVERYDAY DISCRIMINATION

[6, 12, 18 MONTHS ONLY]


R1. In your day-to-day life, how often do any of the following things happen to you? [If all answers = less than once a year or never then skip to Section S]



Almost daily

At least once a week

A few times a month

few times a year

Less than once a year

Neve r

Decli ne to answ er

You are treated with less courtesy than other people are.








You are treated with less respect than other people are.








You receive poorer service than other people at restaurants or stores.








People act as if they think you are not smart.








People act as if they are afraid of you.








People act as if they think you are dishonest.








People act as if they’re better than you are.








You are called names or insulted.








You are threatened or harassed.









R2. What do you think are the main reasons for why you experienced this discrimination? (Choose all that apply)

    • Your ancestry or national origins

    • Your gender identity

    • Your race

    • Your age

    • Your religion

    • Your height

    • Your weight

    • Some other aspect of your physical appearance

    • Your sexual orientation

    • Your education or income level

    • Your HIV status

    • Your disability status

    • Other, please specify

    • Decline to answer


R3. How hard was it to bounce back when you experienced discrimination due to your: [for each selected item above]

    • Very easy

    • Easy

    • Hard

    • Very hard

    • Decline to answer


  1. SOCIAL SUPPORT AND ISOLATION

[6, 12, 18 MONTHS ONLY]


Emotional support


S1. Please respond to each statement:


Never

Rarely

Sometimes

Usually

Always

Decline to answer

I have someone who will listen to me when I need to talk.







I have someone to confide in or talk to about myself or my problems.







I have someone who makes me feel appreciated.







I have someone to talk with when I have a bad day.








Informational support


S2. Please respond to each statement:


Never

Rarely

Sometimes

Usually

Always

Decline to answer

I have someone to give me good advice about a crisis if I need it.







I have someone to turn to for suggestions about how to deal with a problem.







I have someone to give me information if I need it.







I get useful advice about important things in life.








Instrumental support


S3. Please respond to each statement:


Never

Rarely

Sometimes

Usually

Always

Decline to answer

Do you have someone to help you if you are confined to bed?







Do you have someone to take you to the doctor if you need it?







Do you have someone to help with your daily chores if you are sick?







Do you have someone to run errands if you need it?








Social Isolation


S4. Please respond to each statement:


Never

Rarely

Sometimes

Usually

Always

Decline to answer

I feel left out.







I feel that people barely know me.







I feel isolated from others.







I feel that people are around me but not with me.








Companionship


S5. Please respond to each statement:


Never

Rarely

Sometimes

Usually

Always

Decline to answer

Do you have someone with whom to have fun?







Do you have someone with whom to relax?







Do you have someone with whom you can do something enjoyable?








Can you find companionship when you want it?








Shape16


  1. EPICC APP USE AND ACCEPTABILITY [ALL FOLLOW-UP SURVEYS]


Now we will ask about your experiences using the EPICC app. Your honest opinions are critical to the success of this study.


[3, 6, 12, 18 months only]

T1. Please indicate how much you agree or disagree with the following statements:


Strongly Disagree

Disagree

Undecided

Agree

Strongly Agree


I like EPICC







I dislike EPICC







I enjoy using EPICC







I hate using EPICC







EPICC is easy to use







EPICC is hard to use







I thought that EPICC was confusing to use







EPICC is simple







I care about taking my PrEP as prescribed







Taking my PrEP as prescribed is important to me







Taking my PrEP as prescribed is unimportant to me







It’s good to care about taking my PrEP as prescribed







I could show a friend how to use EPICC







I understand how to use all of the features in EPICC







I could show a friend how to use all of the features in EPICC







[If on oral PrEP] EPICC will help me take my PrEP as prescribed in the next week








[If on injectable PrEP] EPICC will help me get my PrEP shot as prescribed in the next few months







[If on oral PrEP] I think I will take my PrEP as prescribed in the next week because of EPICC

[If on injectable PrEP] I think I will get my PrEP shot as prescribed in the next few months because of EPICC







EPICC will lead me to take my PrEP as prescribed







I will take my PrEP as prescribed because of EPICC







I’m confident that I can use EPICC even if I’m really busy







I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m not reminded to do it







I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m really busy







[coder’s note: Scale from Chen E, Moracco KE, Kainz K, Muessig KE, Tate DF. Developing and validating a new scale to measure the acceptability of health apps among adolescents. Digit Health. 2022 Feb 7;8:20552076211067660.]


[9 & 15 months only]

T2. Please indicate how much you agree or disagree with the following statements:


Strongly Disagree

Disagree

Undecided

Agree

Strongly Agree


I care about taking my PrEP as prescribed







Taking my PrEP as prescribed is important to me







Taking my PrEP as prescribed is unimportant to me







It’s good to care about taking my PrEP as prescribed







[If on oral PrEP] EPICC will help me take my PrEP as prescribed in the next week

[If on injectable PrEP] EPICC will help me get my PrEP shot as prescribed in the next few months







[If on oral PrEP] I think I will take my PrEP as prescribed in the next week because of EPICC








[If on injectable PrEP] I think I will get my PrEP shot as prescribed in the next few months because of EPICC.







EPICC will lead me to take my PrEP as prescribed







I will take my PrEP as prescribed because of EPICC







I’m confident that I can use EPICC even if I’m really busy







I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m not reminded to do it







I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m really busy









[3, 6, 12, 18 months]

T3. EPICC helps me make healthier choices in my life.

Slider:


1 | 10

1: Strongly 5: Neither disagree 10: Strongly disagree nor agree agree

Decline to answer




[3, 6, 12, 18 months]

T4. Please indicate how much you agree or disagree with the following statements:


Strongly Disagree


Disagree


Agree

Strongly Agree

Decline to

answer

I trust the information in EPICC.






The information in EPICC is easy to understand.






The information in EPICC is accurate.






I would recommend EPICC to a friend.






I would use EPICC in the future if available








[3, 6, 12, 18 months]

T5. Please rank how useful each feature is in EPICC (1=most useful 8=least useful).


Feature

Ranking

Decline to answer

Medication tracker



Sex Diary



Forum



Ask the expert Q&A



Resources (articles & activities)



My Action Plan



Care Locator



Goals




[3, 6, 12, 18 months]

T6. Other than through an app, how would you most want the information from EPICC to be delivered?

  • Article

  • Animated videos

  • Personal stories

  • Podcast

  • TikTok

  • Text messages

  • Other, specify:

  • Decline to answer


[All follow-up surveys]

T7. Thinking back to your use of the EPICC app over the past 3 months [change to “6 months” for 12 & 18 mo surveys], has EPICC helped you manage any challenges you’ve faced taking PrEP?*

( ) Yes, it helped a great deal ( ) Yes, it helped

( ) No, it didn’t really help

( ) No, it seemed to make things worse

( ) I have not faced any challenges taking PrEP ( ) Decline to answer


[All follow-up surveys]

[For those who have switched PrEP modalities since BL]

T8. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], has EPICC helped you deal with any challenges you've faced when switching to a new type of PrEP?*

( ) Yes, it helped a great deal ( ) Yes, it helped

( ) No, it really didn't help

( ) No, it seemed to make things worse

( ) I have not faced any challenges when switching to a new type of PrEP ( ) Decline to answer


[All follow-up surveys]

T9. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was the EPICC Medication Tracker?

  • Very useful

  • Shape17 Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer


[All follow-up surveys]

[If using daily oral PrEP or 2-1-1]

T10. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how helpful was the EPICC Medication Tracker in helping you remember to take your PrEP?

  • Very helpful

  • Somewhat helpful

  • Neither helpful nor unhelpful

  • Somewhat helpful

  • Not at all helpful

  • Decline to answer


[All follow-up surveys]

[If using injectable PrEP]

T11. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how helpful was the EPICC app in helping you remember to get your PrEP injections?

  • Very helpful

  • Somewhat helpful

  • Neither helpful nor unhelpful

  • Somewhat helpful

  • Not at all helpful

  • Decline to answer


[All follow-up surveys] [For those not using 2-1-1]

T12. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was the EPICC Sex Diary?

  • Shape18 Very useful

  • Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer


[All follow-up surveys] [For those using 2-1-1]

T13. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was the EPICC Sex Diary in helping you remember to take your PrEP as prescribed (before and after sex)?

  • Shape19 Very useful

  • Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer


[3, 6, 12, 18 months]

[For those not using 2-1-1]

T14. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was the EPICC My Action Plan?

  • Shape20 Very useful

  • Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer


[3, 6, 12, 18 months] [For those using 2-1-1]

T15. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was the EPICC My Action Plan in helping you remember to take your PrEP as prescribed (before and after sex)?

  • Shape21 Very useful

  • Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer



[3, 6, 12, 18 months]

T16. How often did you refer to that plan over the past 3 [or 6] months?

    • Very often

    • Somewhat often

    • Rarely

    • Not at all

    • Decline to answer


[3, 6, 12, 18 months]

T17. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how useful was EPICC's Ask the Expert section?

  • Shape22 Very useful

  • Mostly useful

  • Somewhat useful

  • Not useful

  • Decline to answer


[3, 6, 12, 18 months]

T18. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how relevant to you were the conversations in the EPICC Forum?

  • Shape23 Very relevant

  • Mostly relevant

  • Somewhat relevant

  • Not relevant

  • Decline to answer

Shape24

[3, 6, 12, 18 months]

T19. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how often did you contribute/comment in the EPICC Forum?

  • Shape25 Very often

  • Somewhat often

  • Rarely

  • Never

  • Decline to answer


[3, 6, 12, 18 months]

T20. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how helpful were the EPICC Resources (activities and articles)?

  • Shape26 Very helpful

  • Mostly helpful

  • Somewhat helpful

  • Not helpful

  • Decline to answer


[3, 6, 12, 18 months]

T21. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], how relevant to you were the articles in the EPICC Resources Center?

  • Shape27 Very relevant

  • Mostly relevant

  • Somewhat relevant

  • Not relevant

  • Decline to answer


[3, 6, 12, 18 months]

T22. Thinking back to the past 3 months [change to “6 months” for 12 & 18 mo surveys], have you shared anything from the EPICC app with anyone (for example: sent screenshots, tell someone you’re a part of the EPICC study, had someone use the app on your phone, etc.)? (Check all that apply)

  • Friends

  • Family

  • Health care provider

  • Partner

  • Other (specify)

  • I have not shared with anyone

  • Decline to answer


[3, 6, 12, 18 months]

[If any of the options besides “I have not shared with anyone is selected]

T23. What did you share? Select all that apply.

  • Article

  • Activity

  • Medication tracker information

  • Sex Diary information

  • Ask the expert Q and A

  • Other, specify

  • Decline to answer



[3, 6, 12, 18 months]

T24. How much did earning badges motivate you to use the EPICC app?

  • A lot

  • Somewhat

  • A little

  • Not at all

  • Decline to answer


[6, 12, 18 months]

T25. Overall, how satisfied are you with EPICC?

  • Shape28 Very satisfied

  • Mostly satisfied

  • Indifferent

  • Mildly dissatisfied

  • Quite dissatisfied

  • Decline to answer


[6, 12, 18 months]

T26. What features would make EPICC better? [Text area]


[6, 12, 18 months only]

T27. How did your use of the EPICC app change over the past 6 months?

  • Increased

  • Decreased

  • Stayed the same

  • Decline to answer


[6, 12, 18 months only] [If selected decreased]

T28. Why did your use of the EPICC app decrease over the past 6 months? Select all that apply.

  • I forgot to use it

  • It wasn’t relevant anymore

  • I didn’t like it

  • I used another app to track my medications/injections

  • Other, specify

  • Decline to answer




  1. DBS USABILITY & ACCEPTABILITY

[6, 12, 18 month only]


[U1 and U2 only 6, 12, and 18M]

U1. Did you complete a blood collection kit after you joined the EPICC study?

  • Yes

  • No

U2. Is this the first blood collection kit you completed after you joined the EPICC study?

  • Yes

  • No


[If U1 and U2= yes, display U3 and U4]


U3. Please rate how strongly you agree or disagree with each statement.


Strongly Disagree


Disagree


Agree

Strongly Agree

Decline to

answer

Ordering the test kit was easy.






The instructions for completing the test kit were helpful.






Collecting the blood sample was hard.






Mailing the test kit was easy.






Completing the test kit was confusing.






I am confident I could show a friend how to use the test

kit.






I plan to complete additional blood collection kits as

needed while in the study.






Most people would learn to use the test kits quickly.







U4. How comfortable did you feel trying to collect your own blood sample?

  • Very Comfortable

  • Somewhat Comfortable

  • Somewhat Uncomfortable

  • Very Uncomfortable

  • Decline to answer


[If U1 = No, otherwise skip]

U5. What prevented you from completing a test kit after enrolling in the EPICC study? Select all that apply.

  • Ordering the test kit was too hard.

  • I never received the test kit I ordered.

  • The instructions to complete the test kit were difficult to understand.

  • I did not want to use the device to prick myself.

  • I was unable to collect enough blood to fill to complete the kit.

  • I was unable to mail the test kit back.

  • Other, specify

  • Decline to answer




Shape29


Shape30


That concludes our survey! Thank you for participating!


If you have any questions or comments regarding this survey, please provide them below.

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