Baseline Questionnaire for Women

Persistence of Ebola Virus in Body Fluids of Ebola Virus Disease Survivors in Sierra Leone

Attachment4b-Survivor Questionnaire - Female

Main Study Survivor Questionnaire - Female

OMB: 0920-1149

Document [pdf]
Download: pdf | pdf
Form Approved
OMB No. 0920-xxxx
Exp. Date xx/xx/20xx

Unique ID _________________________

Baseline Questionnaire for Women
Section A: To be completed by the Receptionist
1 Unique Study ID:



Thank you for participating in this study. First, I would like to ask you about the best way we can
contact you in case we need to call you to schedule appointments. If someone else answers the phone, we
will not tell them any information about the study. I would like to remind you that your involvement in
the study is completely confidential.

2 Address of residence:

_________________________________________________

3 Village of residence:

_________________________________________________

4 District of residence:

_________________________________________________

5 Telephone:

________________________________________________

6 Other contact/next of kin: _________________________________________________
Now I would like to ask you about the time you were in the Ebola Treatment Unit. We can use your
Ebola discharge certificate to help you remember these dates. May I please see your Ebola discharge
certificate? Enter the following details using ETU discharge certificate.

7 ETU where participant was treated for EVD: __________________________________
8 ETU clinical ID number (if known):

__________________________________

9 Date of ETU admission:

(DD/MM/YYYY) ____ / ____ / ________ □ Estimated

10 Date of ETU discharge:

(DD/MM/YYYY) ____ / ____ / ________ □ Estimated

11 Date of 1st blood test positive for Ebola:

(DD/MM/YYYY) ____ / ____ / ________ □ Estimated

12 Date of 1st blood test negative for Ebola: (DD/MM/YYYY) ____ / ____ / ________ □ Estimated
13 Date of 2nd blood test negative for Ebola: (DD/MM/YYYY) ____ / ____ / ________ □ Estimated
14 Date of enrollment:

(DD/MM/YYYY) ____ / ____ / _________

Public reporting burden of this collection of information is estimated to average 30 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
Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-XXXX).

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Unique ID _________________________

15 Anthropometry measurements:

Height: _____________ (cm)

Weight: _____________ (kg)

CHECKED BY RECEPTIONIST:
Signature: ____________________________

Date: (DD/MM/YYYY) _____/_____/______

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Unique ID _________________________

Section B: To be completed by the Nurse
16 Interview Date: (DD/MM/YYYY)

____ / ____ / _________

17 Initials of person conducting the interview:

____________________

Thank you for participating in this study. I will be conducting your interview today and it will last
around 1 hour. I ask all participants in this study the same questions. All of your answers are
confidential. I will mark a response to every question, but if you are not comfortable answering any
question, you can tell me to mark “Refused”. You can also ask me to go back, or repeat any questions. I
would like to remind you that your involvement in the study is completely confidential. Are you
comfortable proceeding with the interview now?

Socio-Demographic Questions:
Now I would like to ask you a few questions about yourself and your family.
18 What is your gender?
02 - Female
03 - Transgender
99 - Refused



19 What is your age at today? (in years)
□ Estimated
Mark 99 if refused. If age is not known, estimate the age of the participant.
20 What is your date of birth? (DD/MM/YYYY) ____ / ____ / _________
Mark 99/99/9999 if refused. If birth date is not known, please leave blank.
21 What is your level of education?
01 - No school
02 - Primary
03 - Junior Secondary
04 - Senior Secondary
05 - Technical /Vocational training
06 - University
88 - Don’t know
99 - Refused
22 What is your religion?
01 - Muslim
02 - Christian
03 - Other → SPECIFY ______________
88 - Don’t know
99 - Refused

4

□ Estimated

Unique ID _________________________

23 Are you working or studying?
01 - Yes
02 - No SKIP TO 26
99 - Refused SKIP TO 27
24 What type of work do you do?
01 - Health care worker
02 - Trader
03 - Laborer
04 - Driver
05 - Shop assistant
06 - Hairdresser
07 - Housewife
08 - Student
09 - Not working
10 - Other → SPECIFY ______________
99 - Refused
25 If you are working or studying, is it the same as what you were doing before you had Ebola?
01 -Yes
02 - No
88 - Don’t know
99 - Refused
26 If you are not working, why?

27 Who do you live with? MARK ALL THAT APPLY
01 - Alone
02 - With friend/s
03 - With husband or partner
04 - With parents
05 - With extended family member/s
99 - Refused

28 How many people live in your home/ household, including yourself? Home/household means the
people you live with. For example: you cook from the same pot or you use the same bathroom.


Mark 99 if refused.

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Unique ID _________________________

29 Did you move after recovering from Ebola because of stigma?
01 - Yes
02 - No
99 - Refused
30 What is your current relationship status? Choose one.
01 - Single
02 - Widowed
03 - Long-term relationship
04 - Married
05 - Separated or divorced
06 - Other (e.g. dating) Specify:_____________
88 - Don’t know
99 - Refused
Now I would like to ask you some questions about your home. Please pick one option that best
describes your home.
31 What is your main source of drinking water? Choose one.
01 - Well
02 - Surface water (river, dam, lake, stream or canal)
03 - Piped water outside your home
04 - Piped water inside your home
05 - Filtered or bottled water
06 - Rain water
07 - Other SPECIFY________________________
99 - Refused
32 What kind of toilet facilities do you mainly have? Choose one.
01 - Pit latrine
02 - Flush toilet
03 - Other SPECIFY________________________
99 - Refused
33 What type of fuel does your home/household mainly use for cooking? Choose one.
01 - Electricity
02 - Gas (Liquid petroleum or natural)
03 - Kerosene
04 - Charcoal or Wood
05 - Other SPECIFY________________________
99 - Refused
34 What material is mainly used in the construction of the floor in your sleeping room? Choose one.
01 - Mud/clay
02 - Cement
03 - Tile
04 - Wood
05 - Other SPECIFY________________________
99 - Refused

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Unique ID _________________________

Questions on Menstruation & Pregnancy
Now I am going to ask you some personal questions about yourself. I ask all women these
questions. You do not have to answer these questions if you do not want to.
35 AFTER Ebola, have you had regular periods?
01 - Yes
02 - No SKIP TO 36
03 - Other  Specify ____________ SKIP TO 36
88 - Don’t know/unsure SKIP TO 36
99 - Refused SKIP TO 38
35a If yes, when was the first day of your last period?
First day of bleeding: (DD/MM/YYYY)
Mark 99/99/9999 if refused.

____ / ____ / ______ □ Estimated

36 AFTER recovering from Ebola, has your period changed?
01 - Yes, my period is different since being sick
02 - No, I have not noticed any difference in my monthly cycle SKIP TO 37
03 - I am pregnant SKIP TO 38
88 - Don’t know/not sure SKIP TO 37
99 - Refused SKIP TO 38
36a If yes, how? MARK ALL THAT APPLY
01 - Period is more difficult to predict first day of bleeding
02 - Lighter flow (smaller number of days bleeding )
03 - Heavier flow (more days bleeding)
04 - Spotting or repeat bleeding in one month (abnormal bleeding)
05 - Less frequent periods
06 - Other  Specify ________________
88 - Don’t know/not sure
99 - Refused
37 Are you seeing your period right now?
01 - Yes
02 - No
03 - Other → SPECIFY ______________
88 - Don’t know/not sure
99 - Refused
If currently menstruating or having regular menstruation, when the interview is finished, offer the
woman specimen sampling from menstrual blood.
38

Do you know if you are pregnant today?
01 - Yes, I am pregnant
02 - No, I am not pregnant today. SKIP TO 40
88 - Don’t know/not sure SKIP TO 40
99 - Refused SKIP TO 40

To all women: We will also offer you the possibility of a pregnancy test as a part of this study; you
can accept or decline the test as you like.

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Unique ID _________________________



39
If you are pregnant today, how many months pregnant are you?
Mark 99 if refused.
40

□ Estimated

How many times have you been pregnant in your life? Choose one.
01 - I have never been pregnant
02 - One time
03 - Two times
04 - Three times
05 - Four times
06 - Five times
07 - More than five times→ SPECIFY ______________
88 - Don’t know/not sure
99 - Refused



41 How many children do you have that are currently alive?
Mark 99 if refused.

□ Estimated

42 Are you producing breast milk or other liquid from your breasts now?
01 - Yes
02 - No SKIP TO 43
03 - Other  Specify _____________ SKIP TO 43
88 - Don’t know/not sure SKIP TO 43
99 - Refused SKIP TO 43

 months

42a How long have you been producing breast milk?
Mark 99 if refused.

□ Estimated

42b What was the start date of your most recent lactation?
(DD/MM/YYYY)
____ / ____ / ______
□ Estimated
Mark 99/99/9999 if refused.
42c Are you breastfeeding an infant right now?
01 - Yes
02 - No SKIP TO 43
88 - Don’t know/not sure SKIP TO 43
99 - Refused SKIP TO 43
42d If yes, please specify the number of children you are currently breastfeeding, your relationship
to them (son, daughter, niece, nephew, etc.), their age, and if they previously had Ebola
Write “refused” under relationship and age if participant refuses to provide an answer.
No. Relationship
Age
Has this child ever had Ebola If the child had Ebola
illness?
– please note the date
Months
Year
of discharge from ETU
1
2
3

Yes

No

Refused

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Unique ID _________________________

43 Were you pregnant during your Ebola illness?
01 - Yes
02 - No SKIP TO 46
88 - Don’t know/not sure SKIP TO 46
99 - Refused SKIP TO 46
44 If you were pregnant during your Ebola illness, how many months pregnant were you?

 _________

□ Estimated

Mark 99 if refused.
45 If you were pregnant during your Ebola illness, did the baby live? Choose one.
01 - I am still pregnant now
02 - Yes, the baby was born and is living now
03 - No, the baby was born alive but died later
04 - No, the pregnancy ended in a miscarriage or stillbirth
88 - Don’t know/not sure
99 - Refused
46 Since recovering from Ebola, have you become pregnant? Choose one.
01 - Yes
02 - No SKIP TO 48
88 - Don’t know/not sure SKIP TO 48
99 - Refused SKIP TO 48
47a If you became pregnant since recovering from your Ebola illness, what was the outcome?
Choose one.
01 - I am still pregnant now SKIP TO 48
02 - Yes, the baby was born and is living now
03 - No, the baby was born alive but died later
04 - No, the pregnancy ended in a miscarriage or stillbirth SKIP TO 48
88 - Don’t know/not sure SKIP TO 48
99 - Refused SKIP TO 48
47b What was the date of birth? (DD/MM/YYYY) ______/_______/________
Mark 99/99/9999 if refused.

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□ Estimated

Unique ID _________________________

Questions about the time when you were sick with Ebola
Now I would like to ask some questions about the time when you were sick with Ebola.
First I would like to ask if you were part of any research while you were in the ETU or after
you recovered from Ebola. For example, did you receive an experimental drug during your
illness, like ZMapp? Did you receive a vaccine to prevent Ebola, like the STRIVE trial? Did
you receive convalescent plasma while you were sick with Ebola, or did you give convalescent
plasma after recovering from Ebola?
48 Were you or are you currently included in a clinical trial related to your illness with Ebola?
01 - Yes
02 - No SKIP TO 50
88 - Don’t know SKIP TO 50
99 - Refused SKIP TO 50
49 If you were/ are included in a clinical trial, which intervention or trial did you receive?
MARK ALL THAT APPLY. Read out loud each option.
01 - Received convalescent plasma while sick with Ebola
02 - Donated convalescent plasma after recovery from Ebola
03 - Experimental drug → Specify experimental drug: ______________
04 - Vaccine → Specify vaccine: ______________
05 - Other → Specify: ______________
88 - Don’t know
99 - Refused
50 What was the month and approximate day when your Ebola symptoms began? It is ok to
guess if you are not sure of the exact date. (DD/MM/YYYY) ____ / ____ / _______ □ Estimated
Mark 99 if refused.
51 When you were sick with Ebola, did you have vomiting? Choose one.
01 - Yes I vomited
02 - No vomiting
88 - Don’t know/not sure
99 - Refused
52 When you were sick with Ebola, did you have diarrhea? Choose one.
01 - Yes I had diarrhea
02 - No diarrhea
88 - Don’t know/not sure
99 - Refused
53 When you were sick with Ebola, were you ever too sick to get up to relieve yourself in the
toilet (or other place where you go to the bathroom)? Choose one.
01 - Yes, I was too sick to get up to relieve myself in the toilet
02 - No
88 - Don’t know/not sure
99 - Refused

10

Unique ID _________________________

54 When you were sick with Ebola, were you ever too sick to drink anything for a day or more?
Choose one.
01 - Yes, I was too sick to drink anything for a day or more
02 - No
88 - Don’t know/not sure
99 - Refused
55 When you were sick with Ebola, do you remember your experience in the ETU? Choose one.
01 - Yes
02 - Partially
03 - Not at all
99 - Refused
56 Has anyone else in your home/household or close contacts (such as sexual partners outside of
your household, or family) had Ebola, excluding you?
01 - Yes
02 - No SKIP TO 59
88 - Don’t know/not sure SKIP TO 59
99 - Refused SKIP TO 59
57 How many people in your home/household or close contacts had Ebola, excluding you? Close
contacts include sexual partners and family.
Mark 99 if refused.



58 If yes, please specify their relationship to you, and if they recovered or died.
Nurses should capture information on sexual partners, siblings, and children. If more than one
spouse, sibling or child, please list one per row. Write “refused” under relationship if
participant refuses to specify relationship.
No.

Relationship

Did this person
have Ebola before or after you?

Outcome
Recovered

Died

Refused

Before

After

Refused

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Unique ID _________________________

Current Health Status
Next I would like to ask you about your health and well-being today.
59 How is your overall health and wellbeing now, compared to before you had Ebola?
01 - My overall health now is back to normal or the same as before I had Ebola
02 - My overall health now is worse than before I had Ebola
03 - My overall health now is better than before I had Ebola
88 - Don’t know
99 - Refused
60 After you recovered from Ebola, do you have any new health problems?
01 - Yes
02 - No SKIP TO 62
88 - Don’t know/not sure SKIP TO 62
99 - Refused SKIP TO 62
61 If yes, please specify the new health problems you are experiencing. MARK ALL THAT
APPLY
Please read each symptom out loud
Symptom
General (fevers, weight loss, loss of appetite, feeling tired)
Eye problems (itching, ocular redness, eye lid inflammation,
blurred vision, complete loss of vision)
Joint problems
Abdominal Pain
Headache
Neurological (loss of strengthen in arms, or legs, inability to
balance)
Skin problems (itching, spots)
Psychiatric problems (hallucinations, delusions)
Psychological problems (depression, anxiety)
Other (e.g. loss of hair) SPECIFY ____________________

Yes

No

Refused

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62 After you recovered from Ebola, do you have the same level of sexual desire as before you got
sick?
01 - Yes
02 - No
88 - Don’t know/not sure
99 - Refused

12

Unique ID _________________________

Co-Morbidities
63 In the 3 months before you got Ebola, did you have any of the following?
MARK ALL THAT APPLY
Did you get
treatment?

Response

TB
Malaria
HIV/AIDS

If yes, which
treatment did you
receive?

Are still receiving
treatment

Yes

No

Refused

Yes

No

Refused

Yes

No

Refused

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64 After recovering from Ebola, have you had any of the following?
MARK ALL THAT APPLY
Did you get
treatment?

Response

TB
Malaria
HIV/AIDS

If yes, which
treatment did you
receive?

Are still receiving
treatment

Yes

No

Refused

Yes

No

Refused

Yes

No

Refused

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If the participant has a known HIV infection, he/she should be included in the PLHIV survivors’
cohort, and will be interviewed with a special questionnaire covering HIV clinical history. The
participant should be moved to the PLHIV cohort, and should be replaced in the main study cohort.
Ensure this participant is included in the national AIDs control program to receive HIV drugs
(ARV).

13

Unique ID _________________________

Sexual Health
Now I would like to ask about the time after you recovered from Ebola. The questions are
personal. Please remember all of your answers are confidential. If you feel uncomfortable
answering any question, it is okay to say “I prefer not to answer” at any time and we will move
on to the next question. We ask everybody the same questions, and all answers will remain
confidential. By sharing this private information about your personal life, you can help us
understand whether Ebola virus can be passed through sex, when it is safe for Ebola survivors
to have sex, and the best ways to prevent others from getting Ebola in the future. By “sex,” I
mean any vaginal, anal, or oral sex with any another person.
65 Since recovering from Ebola, have you participated in sexual activity? Sexual activity includes
oral, vaginal, or anal sex.
01 - Yes
02 - No SKIP TO 73
99 - Refused SKIP TO 73
66 What was the date/month you resumed sexual activities? It is okay to guess.
(DD/MM/YYYY) ____ / ____ / _________ □ Estimated
If refused date, put 99/99/9999

67 Did you engage in sexual activity in the first three months after recovering from Ebola?
01 - Yes
02 - No SKIP TO 69
88 - Don’t know/not sure SKIP TO 69
99 - Refused SKIP TO 69
68 How often did you use a condom during sex during the three first months after recovering from
Ebola? Choose one.
01 - Never
02 - Some of the time
03 - Every time
88 - Don’t know
99 - Refused
69 How often have you engaged in sexual activities after recovery from Ebola?
01 - Every day
02 - 3 or more time a week
03 - 2 times per week
04 - Once per week
05 - Once per month
06 - Once
88 - Don’t know/not sure
99 - Refused

14

Unique ID _________________________

70 Do you and your sexual partner/s use any method of contraception to avoid pregnancy?
Contraception includes condoms, the pill, intrauterine device, injection, implant.
01 - Yes
02 - No SKIP TO 73
88 - Don’t know/not sure SKIP TO 73
99 - Refused SKIP TO 73
71 If using contraception, which method/s are you using? MARK ALL THAT APPLY.
01 - Condom
02 - Pill/oral contraception
03 - Intrauterine device
04 - Injection/hormone shot
05 - Implant
06 - Other → SPECIFY_________
88 - Don’t know/not sure
99 - Refused
72 Where did you get the condoms you used? MARK ALL THAT APPLY.
01 - I got them at the ETU where I was treated
02 - Free donation from another organization
03 - I bought them from a shop/market/pharmacy
04 - Gift from a friend/family member/loved one
05 - I already had them before I got sick
06 - Other → SPECIFY: _______________
88 - Don’t know
99 - Refused
73 Do you now have any of the following symptoms right now? MARK ALL THAT APPLY.
Please read each symptom out loud.
Symptom

Response
Yes
No

Refused

Vaginal discharge

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Ulcers in genital or anal region

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Lower abdominal pain

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Groin swelling

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Discharge or pain in the rectum

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Genital itching

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Growths on genital or anal region



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Other (specify) ____________________________________

15

Unique ID _________________________

Information received in the ETU
To finish the interview we would like to understand what kind of information about sexual
activity you received when you left the ETU.
74 In the ETU, what advice did you hear about when it is safe for someone who had Ebola to have
sex? MARK ALL THAT APPLY.
01 - Don’t remember hearing any advice
02 - I remember hearing to abstain from sex → SPECIFY Number of months:




03 - I remember hearing to use condoms → SPECIFY Number of months:
(If told to always use, enter 77)
04 - I remember hearing it was safe to have unprotected sexual intercourse immediately
05 - Other → SPECIFY: _______________________________
88 - Don’t know
99 - Refused
75 In the ETU, did you receive advice on contraception?
01 - Yes
02 - No
88 - Don’t know
99 - Refused
76 In the ETU, were you given any contraception?
01 - Yes
02 - No SKIP TO 78
88 - Don’t know SKIP TO 78
99 - Refused SKIP TO 78
77 In the ETU, if you were given contraception, which contraception did you get?
01 - Condoms
02 - Oral pill
03 - Others→ SPECIFY: _______________
88 - Don’t know
99 - Refused
78 Before today, did you receive information from anyone about when it is safe for someone
who had Ebola to have sex? If yes, from who? MARK ALL THAT APPLY.
01 - No
02 - Yes, from friends or family members
03 - Yes, from leaders in my community
04 - Yes, from staff at the clinic where I was treated / other doctors or medical
professionals
05 - Yes, from public health or government officials
06 - Other → SPECIFY: _______________
88 - Don’t know
99 - Refused

16

Unique ID _________________________

79 What advice did you hear about when it is safe for someone who has had Ebola to breastfeed?
MARK ALL THAT APPLY.
01 - Don’t remember hearing any advice
02 - Resume/continue breastfeeding as soon as possible
03 - Do not breastfeed
04 - Give the child formula instead of breast milk
05 - Other → SPECIFY: __________________
88 - Don’t know
99 - Refused
80 Did you receive any infant formula when you were discharged from the ETU? Choose one.
01 - Yes
02 - No
03 - Other → SPECIFY: __________________
88 - Don’t know/not sure
99 - Refused

81 Thank you very much for participating in the survey today. Do you have any other
comments or concerns you would like to share about these topics?

82 Result of questionnaire:
01 - Completed
02 - Partially completed
03 - Participant refused
04 - Other → Specify: _________________

CHECKED BY NURSE:
Signature ________________________________

Date: _____/_____/_________
(DD / MM / YYYY)

CHECKED BY RESEARCH ASSISTANT:
Signature ________________________________

17

Date: _____/_____/_________
(DD / MM / YYYY

Unique ID _________________________

Follow Up Visit Questionnaire for Women
Section A: To be completed by the Receptionist
1 Unique Study ID: 
First, I would like to ask you if your contact information has changed since your last visit. If
someone else answers the phone, we will not tell them any information about the study. I would
like to remind you that your involvement in the study is completely confidential.
2 Address of residence:

_________________________________________________

3 Village of residence:

_________________________________________________

4 District of residence:

_________________________________________________

5 Telephone:

_________________________________________________

6 Other contact/next of kin: _________________________________________________

CHECKED BY RECEPTIONIST:
Signature: ____________________________

Date: (DD/MM/YYYY) _____/_____/______

18


File Typeapplication/pdf
AuthorMARRINAN, Jaclyn Elizabeth
File Modified2016-03-14
File Created2016-01-30

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