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Protocol - Female Contraception Use and Preference in Sickle Cell Disease

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Description

The Female Contraception Survey includes eight self-administered questions that assess a participant’s sexual behavior and use of contraception in the past month and in their lifetime.

Specific Instructions

The Sickle Cell Disease Genitourinary Working Group notes some questions in this assessment are sensitive. Investigators should provide a private space for completing assessments and to be prepared to offer appropriate support.

The Sickle Cell Disease Genitourinary Working Group notes that this protocol has been used in females with sickle cell disease.

Availability

Available

Protocol

Female Contraception Survey

1. Have you ever been sexually active? 
[ ] Yes
[ ] No.
If yes, ask question 2.

2. What is the biological sex of your most recent sex partner? _________

3. At any time in your life, have you had sex with a male partner?
[ ] Yes
[ ] No.
If yes, answer questions 4-8.

4. How old were you the first time you had sex with a male partner? ____

5. Do you currently have sex with a male partner on a regular basis?
[ ] Yes
[ ] No. 

6. Have you ever used birth control, to prevent pregnancy or for another reason? 
[ ] Yes
[ ] No.
If yes:

7. Which types of birth control, if any, have you EVER used? Check all that apply.
[ ] Condom
[ ] Pill
[ ] Patch (Ortho Evra™)
[ ] Shot (Depo-Provera™)
[ ] Ring (Nuva Ring™)
[ ] Arm implant (Nexplanon™, formerly Implanon™)
[ ] Copper intrauterine device/IUD (Paragard™)
[ ] Hormonal intrauterine device/IUD (Mirena™, Skyla™, Liletta™)
[ ] Withdrawal (pulling out)
[ ] Rhythm
[ ] Morning after pill (Plan B™, Ella™)
[ ] Other: ______
[ ] I have never used a birth control method.

8. Which types of birth control, if any, have you used in THE PAST MONTH? Check all that apply.
[ ] Condom
[ ] Pill
[ ] Patch (Ortho Evra™)
[ ] Shot (Depo-Provera™)
[ ] Ring (Nuva Ring™)
[ ] Arm implant (Nexplanon™, formerly Implanon™)
[ ] Copper intrauterine device/IUD (Paragard™)
[ ] Hormonal intrauterine device/IUD (Mirena™, Skyla™, Liletta™)
[ ] Withdrawal (pulling out)
[ ] Rhythm
[ ] Morning after pill (Plan B™, Ella™)
[ ] Other: ______
[ ] I have not used a birth control method in the past month.

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult

Participants

Adult females over 18 years of age

Selection Rationale

The Female Contraception Survey from Roe et al. (2022) is a brief, self-administered questionnaire that was developed for use among females with sickle cell disease. 

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Female Contraception Survey

Source

Roe, A. H., Lang, B., McAllister, A., Gaitors, M. C., Smith-Whitley, K., Schreiber, C. A., & Sayani, F. (2022). Contraceptive use and preferences among females with sickle cell disease. Contraception, 105, 42–45. https://doi.org/10.1016/j.contraception.2021.08.009 

General References

Carvalho, N. S., Braga, J. P., Barbieri, M., Torloni, M. R., Figueiredo, M. S., & Guazzelli, C. A. F. (2017). Contraceptive practices in women with sickle-cell disease. Journal of Obstetrics and Gynaecology, 37(1), 74–77. https://doi.org/10.1080/01443615.2016.1225023

Day, M. E., Stimpson, S. J., Rodeghier, M., Ghafuri, D., Callaghan, M., Zaidi, A. U., … Sharma, D. (2019). Contraceptive methods and the impact of menstruation on daily functioning in women with sickle cell disease. Southern Medical Journal, 112(3), 174–179. https://doi.org/10.14423/SMJ.0000000000000949

Knight-Madden, J., & Barton-Gooden, A. (2009). Contraceptive usage among Jamaican women with sickle cell disease. Contraception, 80(5), 474–478. https://doi.org/10.1016/j.contraception.2009.05.121

O’Brien, S. H., Klima, J., Reed, S., Chisolm, D., Schwarz, E. B., & Kelleher, K. J. (2011). Hormonal contraception use and pregnancy in adolescents with sickle cell disease: Analysis of Michigan Medicaid claims. Contraception, 83(2), 134–137. https://doi.org/10.1016/j.contraception.2010.06.017

Protocol ID

880601

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX880601_Female_Contraception_Use_Biological_Sex_Partner
PX880601020000 What is the biological sex of your most more
recent sex partner? show less
N/A
PX880601_Female_Contraception_Use_Birth_Control_Ever_Prevent_Pregnancy
PX880601060000 Have you ever used birth control, to prevent more
pregnancy or for another reason? show less
N/A
PX880601_Female_Contraception_Use_Birth_Control_Type_Ever_Used
PX880601070100 Which types of birth control, if any, have more
you EVER used? Check all that apply. show less
N/A
PX880601_Female_Contraception_Use_Birth_Control_Type_Ever_Used_Other
PX880601070200 Which types of birth control, if any, have more
you EVER used? Other show less
N/A
PX880601_Female_Contraception_Use_Birth_Control_Type_Past_Month_Used
PX880601080100 Which types of birth control, if any, have more
you used in THE PAST MONTH? Check all that apply. show less
N/A
PX880601_Female_Contraception_Use_Birth_Control_Type_Past_Month_Used_Other
PX880601080200 Which types of birth control, if any, have more
you used in THE PAST MONTH? Other show less
N/A
PX880601_Female_Contraception_Use_Sexually_Active
PX880601010000 Have you ever been sexually active? N/A
PX880601_Female_Contraception_Use_Sex_Male_Partner_Age_First_Time
PX880601040000 How old were you the first time you had sex more
with a male partner? show less
N/A
PX880601_Female_Contraception_Use_Sex_Male_Partner_Any_Time
PX880601030000 At any time in your life, have you had sex more
with a male partner? show less
N/A
PX880601_Female_Contraception_Use_Sex_Male_Partner_Current
PX880601050000 Do you currently have sex with a male more
partner on a regular basis? show less
N/A
SCD Genitourinary
Measure Name

Female Contraception Use

Release Date

August 15, 2023

Definition

This measure can be used to assess contraceptive use among females with sickle cell disease.

Purpose

Females with SCD have a higher baseline risk for blood clots and stroke than the general population and the risk can increase depending on the hormonal composition of the birth control used (progesterone vs. estrogen vs. combination).

Keywords

sickle cell disease, female contraception, sexual function, physical wellness, contraception, hormone

Measure Protocols
Protocol ID Protocol Name
880601 Female Contraception Use and Preference in Sickle Cell Disease
Publications

There are no publications listed for this protocol.