Genital Herpes Survey

This survey is for people who have genital herpes. We know that herpes is not an easy diagnosis. We're searching for information about how people were diagnosed with herpes, how they feel about their diagnostic experience, and how they feel about the treatment options available.

This is all anonymous - there is no way for us to know who you are, nor do we want to know who you are when you complete the survey. Please - only complete it once. No questions will be answered in this format for people completing the survey.

The information obtained will be available to anyone who would like to see or use it when it is complete - individuals, academic centers, pharmaceutical companies developing treatments, and anyone interested in the survey outcome. We may also choose to submit the answer for publication in a scientific journal.

We will leave the survey up for one month and, at the end of the month, determine if it should be left up for one more month. Thank you in advance for your participation, it is greatly appreciated.

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* 1. How would you describe your gender

Female

Male

Transgender female

Transgender male

Gender variant, non-conforming

Not listed

Prefer not to say

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* 2. How old are you?

Under 18

18-24

25-34

35-44

45-54

55-64

65+

prefer not to answer

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* 3. How would you describe your race?

American Indian or Alaska Native

Black or African American

Hispanic or Latino

Asian or Asian American

American Indian or Alaska Native

White

Native Hawaiian or other Pacific Islander

Another race

Prefer not to answer

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* 4. How long ago were you diagnosed with genital herpes?

Less than 6 months ago

6-12 months ago

1-5 years ago

More than 5 years ago

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* 5. From whom did you receive your diagnosis of genital herpes?

Primary care provider

OB-GYN

Urologist

Dermatologist

Planned Parenthood

Other clinic-type setting

Online healthcare professional

Other (please specify)

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* 6. How were you diagnosed with genital herpes? Please check all that apply.

Visual exam only in person – no lab testing ever done.

Visual exam only, virtually – no lab testing ever done.

Visual exam only initially, I had lab testing done at a later time.

Swab test from a sore or lesion (culture or PCR or NAAT)

IgG antibody test (there are often false positives on this test)

IgM antibody test (if this is your only diagnostic tool, you need more - these are often inaccurate)

Western blot antibody test from the University of Washington - the gold standard blood antibody test

None of these

I can’t remember.

Other (please specify)

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* 7. How do you feel about the information your healthcare provider gave you about herpes when you were diagnosed?

I was given lots of information about herpes that helped me understand my disease more fully

I was given a little information but not much - could have used more

I was given almost no information - I had to find out everything about herpes on my own

Other (please specify)

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* 8. How do you feel about the emotional support you were given by your healthcare provider about herpes when you were diagnosed?

My healthcare provider was very supportive and kind to me when I was diagnosed

I felt somewhat supported by my provider but I certainly could have used more

I was given the diagnosis over the phone or in an email with an opportunity to ask more questions at a later time but no support was given at the time

I was given the results over the phone or in an email with no offer for further information or support at all

I was given the diagnosis in person with no support at all. It was bad

Other (please specify)

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* 9. What has your experience been with disclosing your diagnosis to potential sex partners?

I've had everyone I've told about my herpes accept me as a sex partner

I've had mixed responses to disclosing this - some have accepted me as a sex partner and others have not

Everyone I've told about my herpes has declined to have sex with me

I've not told any potential sex partners about my herpes and have not had sex with anyone since my diagnosis

I've not told any potential sex partners about my herpes and have had sex since my diagnosis

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* 10. Do you have genital HSV 1 or 2?

HSV 2

HSV 1

I don't know - I was never told the type

I don't remember the type

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* 11. How many genital outbreaks, if any, have you had in the past year (or since your diagnosis if you were diagnosed less than one year ago)?

None – I’ve never had an outbreak that I know of and I am not on suppressive antiviral therapy

None - I've never had an outbreak that I know of and I am on suppressive antiviral therapy

1-2

3-6

More than 6

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* 12. How many outbreaks did you have in the 1st year after your diagnosis?

None – I’ve never had an outbreak that I know of

1-2

3-6

More than 6

I am still in the first year after my diagnosis

I can't remember

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* 13. Are you currently taking prescription medicine for your genital herpes? Check all that apply.

Yes, I have taken pills every day continuously for more than 6 months (or since you started this treatment option if < 6 months ago)

Yes, I take pills only when I have outbreaks or when I feel I am at risk of getting outbreaks. For example, you take medicine if you know you are experiencing a prodrome warning symptom that an outbreak is coming or if you are doing something you know brings on an outbreak, like waxing, for example.

Yes, I take pills to cover a specific period of time, like a vacation when I don’t want an outbreak.

I use topical prescription antiviral cream/ointment to treat outbreaks (this is not recommended, by the way)

I am not using a prescription antiviral medicine at all.

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* 14. Do you take any over-the-counter, complementary or alternate therapies for your genital herpes? Check all that apply.

I don't take any over the counter, complementary or alternative treatments for my genital herpes

Herbal Topical Oils/Creams. For example, tea tree oil, lemon balm, ginger oil

Nutritional supplements. For example, Omega 3, vitamins, lysine

Traditional Chinese Medicine / acupuncture

I use a non-prescription, herpes specific topical medication to treat my outbreaks (please specify in "other" field)

Other (please specify)

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* 15. Please estimate what you pay for all your genital herpes treatments in one year or since your diagnosis if it was less than one year ago?

Less than $5

$5-$25

$26-$100

$101-$1000

More than $1000

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* 16. What led you to choose the treatment option you chose? Check all that apply.

A healthcare provider recommendation

A partner or other person with herpes suggested that I try this treatment.

To reduce the frequency of outbreaks

To reduce the severity of outbreaks ( pain, number of lesions, duration of outbreaks)

To reduce the risk of infecting others

For peace of mind

Other (please specify)

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* 17. On a scale of 1-5 how satisfied are you with your treatment decision?

1- I’m not at all satisfied with my treatment

2- I’m pretty disappointed in my treatment

3- I could be more satisfied than I am about my treatment but it’s just OK

4- I’m pretty satisfied with my treatment

5- I’m very satisfied with my treatment

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* 18. If you are taking daily pills to manage genital herpes (or have done so in the past), which of these things would have improved your experience? Check all that apply.

Improved ability of pills to reduce the frequency of outbreaks.

Improved ability of pills to reduce the severity of outbreaks (making outbreaks less painful, or shorter-lasting, or fewer lesions)

Improved ability of pills to reduce transmission to sex partners.

Reduce how often you must take medication.

Reduce the pill size.

Find a different way to deliver treatment besides taking pills.

Reduce the cost of the medication.

Reduce any side effects from the medication.

Other (please specify)

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* 19. If you have been offered the option of taking daily pills to manage genital herpes but decided not to, which of these things might change your mind and persuade you to try daily pills in the future? Check all that apply.

I am taking daily antiviral therapy so this question does not apply to me.

Improve the ability to reduce the frequency of recurrences

Improved ability of pills to reduce the severity of outbreaks (making outbreaks less painful, or shorter-lasting, or fewer lesions)

Improved ability of pills to reduce transmission to sex partners.

Reduce how often you must take medication.

Reduce the pill size.

Reduce the cost of the medication.

Reduce any side effects from the medication.

Make it available without a prescription, over-the-counter

Other (please specify)

Genital Herpes Survey

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* 1. How would you describe your gender

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* 2. How old are you?

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* 3. How would you describe your race?

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* 4. How long ago were you diagnosed with genital herpes?

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* 5. From whom did you receive your diagnosis of genital herpes?

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* 6. How were you diagnosed with genital herpes? Please check all that apply.

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* 7. How do you feel about the information your healthcare provider gave you about herpes when you were diagnosed?

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* 8. How do you feel about the emotional support you were given by your healthcare provider about herpes when you were diagnosed?

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* 9. What has your experience been with disclosing your diagnosis to potential sex partners?

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* 10. Do you have genital HSV 1 or 2?

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* 11. How many genital outbreaks, if any, have you had in the past year (or since your diagnosis if you were diagnosed less than one year ago)?

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* 12. How many outbreaks did you have in the 1st year after your diagnosis?

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* 13. Are you currently taking prescription medicine for your genital herpes? Check all that apply.

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* 14. Do you take any over-the-counter, complementary or alternate therapies for your genital herpes? Check all that apply.

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* 15. Please estimate what you pay for all your genital herpes treatments in one year or since your diagnosis if it was less than one year ago?

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* 16. What led you to choose the treatment option you chose? Check all that apply.

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* 17. On a scale of 1-5 how satisfied are you with your treatment decision?

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* 18. If you are taking daily pills to manage genital herpes (or have done so in the past), which of these things would have improved your experience? Check all that apply.

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* 19. If you have been offered the option of taking daily pills to manage genital herpes but decided not to, which of these things might change your mind and persuade you to try daily pills in the future? Check all that apply.

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* 20. Please list at least one website you've used to gain information about genital herpes, more if appropriate.

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* 21. If you had three wishes about your genital herpes diagnosis, what would they be