Form Approved
OMB No. 0920-1423
Expiration Date: 12/31/2026
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
B. SOCIOECONOMIC AND RISK CORRELATES
C. HEALTHCARE ACCESS, COMMUNICATION, AND STI TESTING/DIAGNOSIS
D. HIV
E. PrEP ROUTING
F. CURRENT PrEP USE
G. NEW PrEP PRESCRIPTION
H. PrEP RESTART
I. PREVIOUS PrEP USE: NO PLANS TO RESTART/UNSURE
J. NO PRIOR PrEP USE: NO PLANS TO START/UNSURE
K. PrEP CHOICES
L. PREP ADHERENCE AND BARRIERS
M. TECHNOLOGY USE AND ONLINE PARTNER SEEKING BEHAVIOR
N. RELATIONSHIPS AND SEXUAL HEALTH PRIORITIES
O. SEXUAL BEHAVIORS
P. SUBSTANCE USE
Q. MENTAL HEALTH
R. EVERYDAY DISCRIMINATION
S. SOCIAL SUPPORT AND ISOLATION
T. EPICC APP USABILITY & ACCEPTABILITY
U. DBS USABILITY & ACCEPTABILITY
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.
B. 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
[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
[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? |
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Discuss openly with your healthcare provider any problems that may be related to your medications? |
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Work out differences with your healthcare provider when they arise? |
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Ask your healthcare provider things about your health (like tests or treatments) that concern you? |
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Discuss openly with your healthcare provider your past or current drug and/or alcohol use? |
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Discuss openly with your healthcare provider your sexual activity? |
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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 = C6, otherwise C7]
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
Very Unlikely
Somewhat Unlikely
Somewhat Likely
Very Likely
Decline to answer
[ALL FOLLOW-UP SURVEYS EXCEPT QUESTION D7]
[D7 asked only at 6, 12, 18 months]
[If D3=reactive, skip to section M after D7]
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 D6]
No
Yes
Decline to answer
D2. When did you have your most recent HIV test? Please enter the month, day, and year. It is OK if you don’t know the exact date. Please make your best guess.
[Month]
[Day]
[Year]
Decline to answer
D3. What was the result of your most recent HIV test?
Reactive
Non-reactive
I don’t remember
I never got the results
Decline to answer
[Reactive=D4 otherwise D6]
D4. Have you started HIV treatment?
Yes
No
Decline to answer
D5. Approximately when did you start HIV treatment? It’s okay if you can’t remember the exact date. Please make your best guess.
[Month]
[Day]
[Year]
Decline to answer
D6. 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
----------------------------------------------10
Decline to answer
D7. 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 |
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[if injectable PrEP selected in F1]
F2. Which type of injectable PrEP are you currently on?
Apretude®, cabotegravir (injection every two months)
Yeztugo®, lenacapavir (injection every six months)
F4. When did you last stop using [pipe in previous modality]? It’s OK if you don’t the exact date. Please provide your best guess.
F5. When did you last start using [pipe in current modality from F1]? It’s OK if you don’t know the exact date. Please provide your best guess.
F6. 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
F7. Please rank the reasons why you started taking [current modality] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F6] Most Important, Important, Least Important
Decline to answer
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[For other PrEP types selected in F9]
F10. Please rank other kind(s) of PrEP used in order of use (1=first type of PrEP used, 2 = 2nd type of PrEP used, etc.).
[If any methods selected from table: Questions F10- F15 pertain to the first PrEP method selected in F9]
F11. When did you last start this medication: [pull answer #1 from F9]? It’s OK if you don’t know the exact date. Please provide your best guess.
F12. When did you last stop this medication: [pull answer #1 from F9]? It’s OK if you don’t know the exact date. Please provide your best guess.
F13. Why did you start using [pull answer #1 from F9]? (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=F14, otherwise F15]
F14. Please rank the reasons why you started using [insert PrEP method started] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F13] rank Most Important, Important, Least Important
Decline to answer
[Skip to F15]
F15. Why did you stop taking this medication, [pull answer #1 from F9]? (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: _________________________________________________
F16. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F15] rank Most Important, Important, Least Important
Decline to answer
[If >1 PrEP method selected in F9 = F16; Otherwise skip to F39].
F17. When did you last start this medication: [pull answer #2 from F9]? It’s OK if you don’t know the exact date. Please provide your best guess.
Decline to answer
F18. When did you last stop this medication: [pull answer #2 from F9]? It’s OK if you don’t know the exact date. Please provide your best guess.
Decline to answer
F19. Why did you start using [pull answer #2 from F9]? (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=F20, otherwise F21]
F20. Please rank the reasons why you started using [insert PrEP method started] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F19] rank Most Important, Important, Least Important
Decline to answer
F21. Why did you stop taking this medication, [pull answer #2 from F9]? (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
F22. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F21] rank Most Important, Important, least Important
Decline to answer
F23. When did you last start using [pipe in current modality]? It’s OK if you don’t know the exact date. Please provide your best guess.
F24. 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
F25. Please rank the reasons why you started taking [insert PrEP method started] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F24] rank Most Important, Important, Least Important
Decline to answer
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[if other PrEP types selected in F27]
F28. Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.).
F29. When did you last start this medication: [pull answer #1 from F27]? It’s OK if you don’t know the exact date. Please provide your best guess.
F30. When did you last stop this medication: [pull answer #1 from F27]? It’s OK if you don’t know the exact date. Please provide your best guess.
F31. Why did you start using [pull answer #1 from F27]? (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=F32, otherwise F33]
F32. Please rank the reasons why you started taking [insert PrEP method started] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F31] rank Most Important, Important, Least Important
Decline to answer
F33. Why did you stop taking this medication, [pull answer #1 from F27]? (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
F34. Please rank the reasons why you stopped using that type of PrEP in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F33] rank Most Important, Important, Least Important
Decline to answer
[If >1 PrEP method selected in F27 = F35; Otherwise skip to F41].
F35. When did you last start this medication: [pull answer #2 from F27]? It’s OK if you don’t know the exact date. Please provide your best guess.
F36. When did you last stop this medication: [pull answer #2 from F27]? It’s OK if you don’t know the exact date. Please provide your best guess.
F37. Why did you start using [pull answer #2 from F27]? (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=F36, otherwise F37]
F38. Please rank the reasons why you started taking [insert PrEP method started] in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F37] rank Most Important, Important, Least Important
Decline to answer
F39. Why did you stop using this medication, [pull answer #2 from F27]? (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
F40. Please rank the reasons why you stopped PrEP at that time in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F39] rank Most Important, Important, Least Important
Decline to answer
F40a. 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=F40b, otherwise F41]
F40b. Please rank the reasons why you are currently using PrEP in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F38a] rank Most Important, Important, Least Important
Decline to answer
F41. 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
[F40 = yes, otherwise skip to F46]
F42. Did you talk with your doctor/health care provider before stopping PrEP?
No
Yes
Decline to answer
F43. 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
F44. Please rank the reasons why you stopped PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F43] rank Most Important, Important, Least Important
Decline to answer
F45. 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 F47]
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
F46. 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
F47. 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
F48. 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
F49. What do you think about whether HIV PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?
PrEP has no effect on other STIs
PrEP helps to prevent other STIs
Decline to answer
F50. 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
F51. 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.
[F52 and F53, only 3, 9, and 15M surveys]
F52. Please select how much you agree with the following statements:
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Strongly Agree |
Agree |
Neither Agree nor Disagree |
Disagree |
Strongly Disagree |
Decline to answer |
I have been rejected romantically for taking PrEP |
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I have been judged by a health care provider because of taking PrEP |
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I have been blamed by people in my community for spreading HIV through PrEP use |
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I have been slut-shamed for taking PrEP (or told that I am a "Truvada or Descovy slut/whore") |
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I have been unfairly discriminated against for taking PrEP |
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I have been yelled at or scolded because of taking PrEP |
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I have experienced physical violence because of taking PrEP |
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|
F53. 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 |
|
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|
|
|
|
I worry people will think I am gay if they know I take PrEP |
|
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|
|
|
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I worry my friends will find out that I take PrEP |
|
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|
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|
|
I worry my family will find out that I take PrEP |
|
|
|
|
|
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I worry my sex partners will find out that I take PrEP |
|
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|
|
|
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I think people will give me a hard time if I tell them I take PrEP |
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I think people will judge me if they know I am taking PrEP |
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[Skip to Section K]
G. New PrEP Prescription
G1. What kind of PrEP are you planning to start?
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[if G1=injectable PrEP]
G2.Which type of injectable PrEP are you planning to start?
Apretude®, cabotegravir (injection every two months)
Yeztugo®, lenacapavir (injection every six months)
G4. 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=G5, otherwise G6]
G5. Please rank the reasons why you are starting PrEP in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from G4] rank Most Important, Important, Least Important
Decline to answer
G6. 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
G7. What do you think about whether HIV PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?
PrEP has no effect on other STIs
PrEP helps to prevent other STIs
Decline to answer
G8. 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
G9. 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.
[G10 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 |
|
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|
|
|
|
[Skip to Section K]
H. PrEP Restart
H1. What kind of PrEP are you planning to start?
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[if injectable PrEP is selected in H1]
H2. Which type of injectable PrEP are you planning to start?
Apretude®, cabotegravir (injection every two months)
Yeztugo®, lenacapavir (injection every six months)
[H4-H10 if on PrEP at previous survey, otherwise skip to H11]
H5. 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
H6. Please rank the reasons why you stopped PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from H5] rank Most Important, Important, Least Important
Decline to answer
H7. Did you talk with your doctor/health care provider before stopping PrEP?
No
Yes
Decline to answer
H8. 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 H10]
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
H9. 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
[For those not on PrEP at previous survey]
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[If other kinds of kinds of PrEP selected in H12 go to H13 otherwise H14]
H13. Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.).
H14. When did you last start this medication: [pull answer #1 from H12]? It’s OK if you don’t know the exact date. Please provide your best guess.
H15. When did you last stop this medication: [pull answer #1 from H12]? It’s OK if you don’t know the exact date. Please provide your best guess.
H16. Why did you start using [pull answer #1 from H12]? (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=H16, otherwise H17]
H17. Please rank the reasons why you started using [insert PrEP method started] in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from H115] rank Most Important, Important, Least Important
Decline to answer
H18. Why did you stop taking this medication, [pull answer #1 from H12]? (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
H19. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from H18] rank Most Important, Important, Least Important
Decline to answer
[If >1 PrEP method selected in H12 = H20; Otherwise skip to H26].
H20. When did you last start this medication: [pull answer #2 from H12]? It’s OK if you don’t know the exact date. Please provide your best guess.
H21. When did you last stop this medication: [pull answer #2 from H12]? It’s OK if you don’t know the exact date. Please provide your best guess.
H22. Why did you start using [pull answer #2 from H12]? (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=H23, otherwise H24]
H23. Please rank the reasons why you started using [insert PrEP method started] in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from H22] Most Important, Important, Least Important
Decline to answer
H24. Why did you stop taking this medication, [pull answer #2 from H12]? (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
H25. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from F24] rank Most Important, Important, Least Important
Decline to answer
[All those planning to restart]
H26. 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=H27, otherwise H28]
H27. Please rank the reasons why you are restarting PrEP in order of importance, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from H26] rank Most Important, Important, Least Important
Decline to answer
H28. 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
H29. 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
H30. What do you think about whether HIV PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?
PrEP has no effect on other STIs
PrEP helps to prevent other STIs
Decline to answer
H31. 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.
[H32 and H32 only 3, 9, and 15M surveys]
H33. 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 restarting PrEP.
H34. 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 |
|
|
|
|
|
|
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, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I2] rank Most Important, Important, Least Important
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
[For those not on PrEP at previous survey]
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[If more than one than one modality selected in I9, otherwise I11]
I10. Please rank them in order of use (1=first type of PrEP used since last survey, 2 = 2nd type of PrEP used, etc.).
I11. When did you last start this medication: [pull answer #1 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.
I12. When did you last stop this medication: [pull answer #1 from I9]? It’s OK if you know the exact date. Please provide your best guess.
I13. 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=I14, otherwise I15]
I14. Please rank the reasons why you started using [insert PrEP method started] in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I13] rank Most Important, Important, Least Important
I15. 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
I16. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I15] rank Most Important, Important, Least Important
Decline to answer
[If >1 PrEP method selected in I9 = I17; Otherwise skip to I23].
I17. When did you last start this medication: [pull answer #2 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.
I18. When did you last stop this medication: [pull answer #2 from I9]? It’s OK if you don’t know the exact date. Please provide your best guess.
I19. 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]
I20. Please rank the reasons why you started using [insert PrEP method started] in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I19] rank Most Important, Important, Least Important
Decline to answer
I21. 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
I22. Please rank the reasons why you stopped using that type of PrEP at that time in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I21] rank Most Important, Important, Least Important
Decline to answer
I23. 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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[if I23 is injectable PrEP]
I24. Which type of injectable PrEP are you planning to start?
Apretude®, cabotegravir (injection every two months)
Yeztugo®, lenacapavir (injection every six months)
I26. 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=I27, otherwise I28]
I27. Please rank the reasons why you are considering restarting PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I26] rank Most Important, Important, Least Important
Decline to answer
I28. 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
I30. Please rank the reasons why you are unsure about restarting PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I29] rank Most Important, Important, Least Important
Decline to answer
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
I32. Please rank the reasons why you do not plan to restart PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I31] rank Most Important, Important, Least Important
Decline to answer
I33. 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 I23]
Receiving more information on the effectiveness of [pipe in PrEP modality from I23]
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
I34. Please rank the reasons what would motivate you to restart PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from I33] rank Most Important, Important, Least Important
Decline to answer
Now we want to ask you a few questions about your feelings related to previously taking PrEP.
[I35 and I35 only 3, 9, and 15M surveys]
I35. 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 |
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I have been judged by a health care provider because of taking PrEP |
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I have been blamed by people in my community for spreading HIV through PrEP use |
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I have been slut-shamed for taking PrEP (or told that I am a "Truvada or Descovy slut/whore") |
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I have been unfairly discriminated against for taking PrEP |
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I have been yelled at or scolded because of taking PrEP |
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I have experienced physical violence because of taking PrEP |
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|
Now we want to ask you a few questions about your feelings related to possibly restarting PrEP.
I36. 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 |
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I worry people will assume that I am HIV+ if they know I take PrEP |
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I worry people will think my partner(s) are HIV+ if they know I take PrEP |
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I worry about listing PrEP as one of my current medications during doctor appointments |
|
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I feel ashamed to tell other people I am taking PrEP |
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I worry people will think I am a bad person if they know I take PrEP |
|
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I worry people will think I am gay if they know I take PrEP |
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I worry my friends will find out that I take PrEP |
|
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I worry my family will find out that I take PrEP |
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I worry my sex partners will find out that I take PrEP |
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I think people will give me a hard time if I tell them I take PrEP |
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I think people will judge me if they know I am taking PrEP |
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I37. 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
I38. What do you think about whether HIV PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?
PrEP has no effect on other STIs
PrEP helps to prevent other STIs
Decline to answer
I39. 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
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®, cabotegravirYeztugo®, lenacapavir |
Other (please specify): ________
Decline to answer
[If J1=injectable PrEP]
J2. Which type of injectable PrEP are you considering starting?
Apretude®, cabotegravir (injection every two months)
Yeztugo®, lenacapavir (injection every six months)
J4. 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]
J5. Please rank the reasons why you are considering starting PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from J2] rank Most Important, Important, Least Important
Decline to answer
J7. 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
J8. Please rank the reasons why you are unsure about staring PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from J7] rank Most Important, Important, Least Important
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
J10. Please rank the reasons why you do not plan to start PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from J9] rank Most Important, Important, Least Important
Decline to answer
J11. 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 J2]
Receiving more information on the effectiveness of [pipe in PrEP modality from J2]
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
J12. Please rank the reasons what would motivate you to start PrEP in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from J11] rank Most Important, Important, Least Important
Decline to answer
Now we want to ask you a few questions about your feelings related to possibly starting PrEP.
[J13 only 3, 9, and 15M surveys]
J13. 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 |
|
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|
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|
|
I worry my friends will find out that I take PrEP |
|
|
|
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|
|
I worry my family will find out that I take PrEP |
|
|
|
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|
|
I worry my sex partners will find out that I take PrEP |
|
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|
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|
|
I think people will give me a hard time if I tell them I take PrEP |
|
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|
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I think people will judge me if they know I am taking PrEP |
|
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|
J14. 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
J15. What do you think about whether HIV PrEP helps prevent other kinds of sexually transmitted infections (STIs), like gonorrhea or chlamydia?
PrEP has no effect on other STIs
PrEP helps to prevent other STIs
Decline to answer
J16. 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
[Selected multiple options=K2, otherwise K13]
K2. Please rank the reasons why you have chosen daily oral PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K1] rank Most Important, Important, Least Important
Decline to answer
[Selected multiple options=K4, otherwise Section K13]
K4. Please rank the reasons why you have chosen intermittent oral PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K3] rank Most Important, Important, Least Important
Decline to answer
[Selected multiple options=K6, otherwise Section K14]
K6. Please rank the reasons why you have injectable PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K5] rank Most Important, Important, Least Important
Decline to answer
[Selected multiple options=K8, otherwise K13]
K8. Please rank the reasons why you are considering daily oral PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K7] rank Most Important, Important, Least Important
Decline to answer
[Selected multiple options=K10, otherwise Section K13]
K10. Please rank the reasons why you are considering intermittent oral PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K9] rank Most Important, Important, Least Important
Decline to answer
[Selected multiple options=K12, otherwise Section K14]
K12. Please rank the reasons why you are considering injectable PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from K11] rank Most Important, Important, Least Important
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-six 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
[if E3 is yes (about to restart PrEP]
K15. Compared to [pipe in PrEP modality planning to restart], 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
[if E4 is yes (planning to start or unsure)]
K16.Compared to [pipe in PrEP modality planning to start], 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
[if E4 is unsure (unsure if they are going to start PrEP)]
K17. Compared to [pipe in PrEP modality they are thinking about starting], 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
L. PREP ADHERENCE AND BARRIERS
[All follow-up visits]
L1. In the past 7 days, how many days did you take PrEP?
Text box: 1-7
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, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from L3] rank Most Important, Important, Least Important
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).
Take PrEP on a weekend:
Take PrEP when dealing with schedule changes:
Take PrEP when having medication side effects:
Keep your PrEP medical appointments:
Follow a plan for taking PrEP:
Decline to answer
[Skip to Section L18]
L6. In the past 3 months, did you have any condomless anal sex?
Yes
No
Decline to answer
[if yes to condomless anal sex, otherwise skip to L11]
L7. 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
Decline to answer
Figure.
[IF L6 =100%, skip to L10]
L8. 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: ___ %
Took 4 of the 4 pills: ___%
Decline to answer
L9. 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=L10, otherwise L11]
L10. Please rank the things that have gotten in the way of taking PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from L7] rank Most Important, Important, Least Important
Decline to answer
L11. 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).
Take PrEP when dealing with schedule changes:
Take PrEP when having medication side effects:
Keep your PrEP medical appointments:
Follow a plan for taking PrEP:
Decline to answer
[Skip to L19]
L12. 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
L13. 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
L14. In the past 3 months, have you missed any injections?
[Yes=L15, otherwise L16]
No
Yes
Decline to answer
L15. 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=L16, otherwise L17]
L16. Please rank the things that have gotten in the way of taking PrEP, in order of importance, in order of importance by selecting most important, important, and least important for each reason you selected.
[Answers from L14] rank Most Important, Important, Least Important
Decline to answer
L17. 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).
Keep your injectable PrEP appointments:
Follow a plan for getting your PrEP:
Decline to answer
[ALL PARTICIPANTS]
[L18 only 3, 9, and 15M]
L18. 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 |
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Having to talk to a healthcare provider about PrEP |
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Friends finding out that I am on PrEP |
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Sexual partner(s) finding out that I am on PrEP |
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|
Family members finding out that I am on PrEP |
|
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|
The long-term effects of PrEP on my health |
|
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The possibility that PrEP might not provide complete protection against HIV |
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|
The possibility that if I become HIV positive, certain medications won’t work |
|
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|
The potential side effects of PrEP |
|
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|
|
Having to remember to take a pill or get an injection |
|
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Getting transportation to PrEP appointments/labs |
|
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Returning for PrEP follow-up appointments and labs |
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Getting a PrEP prescription refilled |
|
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Using insurance to get coverage for PrEP costs |
|
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|
Getting the costs of PrEP covered (including office visits or office visit co-pays, lab costs, transportation costs) |
|
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|
[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 |
|
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|
Chat with friends |
|
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Find a date |
|
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Meet partners for sex |
|
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|
Look for work opportunities |
|
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|
Track your health behaviors (diet, exercise, medication management, etc.) |
|
|
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|
|
Create event reminders (take a daily pill, exercise, etc.) |
|
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|
|
|
M9. What are the 3 social media platforms you use most often?
YouTube
Snapchat
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. |
( ) |
( ) |
( ) |
( ) |
( ) |
( ) |
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 |
( ) |
( ) |
( ) |
( ) |
( ) |
( ) |
[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]
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]
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]
[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]
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]
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]
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
[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]
[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
[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 |
|
|
|
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.]
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? |
|
|
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|
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Feeling bad about yourself - or that you are a failure or have let yourself or your family down? |
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Trouble concentrating on things, such as reading the newspaper or watching television? |
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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? |
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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? |
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Trouble relaxing? |
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Being so restless that it is hard to sit still? |
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Becoming easily annoyed or irritable? |
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Feeling afraid as if something awful might happen? |
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[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 |
Never |
Decline to answer |
You are treated with less courtesy than other people are. |
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You are treated with less respect than other people are. |
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You receive poorer service than other people at restaurants or stores. |
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People act as if they think you are not smart. |
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People act as if they are afraid of you. |
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People act as if they think you are dishonest. |
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People act as if they’re better than you are. |
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You are called names or insulted. |
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You are threatened or harassed. |
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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 sex
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
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. |
|
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I have someone to confide in or talk to about myself or my problems. |
|
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I have someone who makes me feel appreciated. |
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I have someone to talk with when I have a bad day. |
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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. |
|
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I have someone to turn to for suggestions about how to deal with a problem. |
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I have someone to give me information if I need it. |
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I get useful advice about important things in life. |
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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? |
|
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Do you have someone to take you to the doctor if you need it? |
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Do you have someone to help with your daily chores if you are sick? |
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Do you have someone to run errands if you need it? |
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S4. Please respond to each statement:
|
Never |
Rarely |
Sometimes |
Usually |
Always |
Decline to answer |
I feel left out. |
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I feel that people barely know me. |
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I feel isolated from others. |
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I feel that people are around me but not with me. |
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Companionship
S5. Please respond to each statement:
|
Never |
Rarely |
Sometimes |
Usually |
Always |
Decline to answer |
Do you have someone with whom to have fun? |
|
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Do you have someone with whom to relax? |
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Do you have someone with whom you can do something enjoyable? |
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Can you find companionship when you want it? |
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T. 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 |
Decline to answer |
I like EPICC |
|
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I dislike EPICC |
|
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I enjoy using EPICC |
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I hate using EPICC |
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EPICC is easy to use |
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EPICC is hard to use |
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I thought that EPICC was confusing to use |
|
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EPICC is simple |
|
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I care about taking my PrEP as prescribed |
|
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Taking my PrEP as prescribed is important to me |
|
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Taking my PrEP as prescribed is unimportant to me |
|
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It’s good to care about taking my PrEP as prescribed |
|
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I could show a friend how to use EPICC |
|
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I understand how to use all of the features in EPICC |
|
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I could show a friend how to use all of the features in EPICC |
|
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[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 |
|
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[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 |
|
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EPICC will lead me to take my PrEP as prescribed |
|
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I will take my PrEP as prescribed because of EPICC |
|
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I’m confident that I can use EPICC even if I’m really busy |
|
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I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m not reminded to do it |
|
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I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m really busy |
|
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[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 |
Decline to answer |
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 |
|
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It’s good to care about taking my PrEP as prescribed |
|
|
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|
|
|
[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 |
|
|
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|
|
|
[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. |
|
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EPICC will lead me to take my PrEP as prescribed |
|
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I will take my PrEP as prescribed because of EPICC |
|
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|
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I’m confident that I can use EPICC even if I’m really busy |
|
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|
|
I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m not reminded to do it |
|
|
|
|
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I’m confident that I can use EPICC to take my PrEP as prescribed even if I’m really busy |
|
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|
[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. |
|
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|
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I would use EPICC in the future if available |
|
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|
|
[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]
( ) 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
( ) 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
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?
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)?
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?
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)?
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?
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?
Very relevant
Mostly relevant
Somewhat relevant
Not relevant
Decline to answer
[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?
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)?
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?
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?
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
[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__________
That concludes our survey! Thank you for participating!
If you have any questions or comments regarding this survey, please provide them below.
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Jesse Golinkoff |
| File Modified | 0000-00-00 |
| File Created | 2026-01-31 |