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Protocol - Sickle Cell Disease Pain Associated with Menstruation

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Description

This protocol includes five self-administered items from the Demographic Survey in Table 1 from Sharma et al. (2019) that document sickle cell pain associated with menstruation. The protocol includes instructions for categorizing participants who experience acute “sickle cell” pain that is temporally associated with menstrual pain.

Specific Instructions

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

The WG strongly recommends investigators collect both Sickle Cell Disease Pain Associated with Menstruation and Sickle Cell Disease Pain Associated with Menstruation - Quality of Life to fully assess the impact of menstruation on sickle cell pain. Additionally, the WG recommends that investigators follow the scoring criteria to distinguish sickle cell pain and menstrual pain described in Table 1 of Sharma et al. (2019).

The WG notes that the overlap of menstrual pain and sickle cell pain is not well understood and encourages investigators to develop and validate new tools to better distinguish these types of pain and also to define experiences of affected people.

Availability

Available

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Protocol

Questions Regarding SCD Pain Associated with Menstruation, excerpted from Demographic Survey from Table 1 in Sharma et al. (2019).

The Sickle Cell Disease Genitourinary Working Group notes the term “pain” in the questions below refers to specifically to “sickle cell pain.”

1. Have you been able to identify any triggers for your pain?
[ ] 1 Yes
[ ] 2 No

2. If you answered yes to question 1, what triggers your pain? (Circle all that apply)
[ ] 1 Cold weather
[ ] 2 Seasons changing
[ ] 3 Dehydration in the summer time
[ ] 4 Exercise
[ ] 5 Menstrual periods
[ ] 6 Stress
[ ] 7 Illness
[ ] 8 Other: ___________
[ ] 9 Not applicable

3. Have you ever experienced “sickle cell pain” in the week before or during your period?
[ ] 1 Yes
[ ] 2 No

4. If you answered “Yes” to the question above (question 3), when you think of your last menstrual period, when did you start to have “Sickle cell pain”? If no, please skip this question.
[ ] 1 0-7 days before the start of your menstrual period
[ ] 2 During your menstrual period
[ ] 3 0-7 days after your menstrual period
[ ] 4 I did not have sickle cell pain associated with my menstrual period
[ ] 5 Not applicable

5. If you answer “Yes” to question 3 above, how often do you have your “sickle cell pain” during your periods?
If no, please skip this question.
[ ] 1 Every now and then
[ ] 2 Almost every period
[ ] 3 With every period
[ ] 4 Not applicable

Scoring Instructions:
Acute “sickle cell” pain associated with menstruation is defined as a “Yes” answer to all of the following:

Do your menstrual periods trigger your “sickle cell pain”

  • Answers “Yes” to question 1 and
  • Selects “Menstrual periods” in question 2.

Do you start to have “sickle cell pain” 0-7 days before or during your periods?

  • Answers “Yes” to question 3 and
  • Selects “0-7 days before the start of your menstrual period” or “During your menstrual period” in question 4.

Does your “sickle cell pain” occur with either every or almost every menstrual period?

  • Selects “Almost every period” or “With every period” for question 5.

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

Adolescent, Adult

Participants

Adolescent and adult menstruating participants with sickle cell disease

Selection Rationale

This measurement protocol records the incidence of sickle cell pain during menstruation, separately from menstrual pain. This information is important to understanding the overlap of menstrual-associated pain with “sickle cell” pain. Use of one or more scales (e.g., measuring acute “sickle cell” pain and menstrual pain) may be useful in understanding this overlap.

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Sharma et al. Acute vaso-occlusive pain is temporally associated with the onset of menstruation in women with sickle cell disease. J Women’s Health (Larchmt), 2019. Demographic survey.

Source

Sharma, D., Day, M. E., Stimpson, S.-J., Rodeghier, M., Ghafuri, D., Callaghan, M., Zaidi, A. U., Hannan, B., Kassim, A., Zempsky, W., Wellons, M., James, A., Bruehl, S., & DeBaun, M. R. (2019). Acute vaso-occlusive pain is temporally associated with the onset of menstruation in women with sickle cell disease. Journal of Women’s Health, 28(2), 162-169. https://doi.org/10.1089/jwh.2018.7147 

This protocol includes questions 11 and 12 from section 1 and questions 10-12 from section 2 of the demographic survey. 

General References

Chesney, M. A., & Tasto, D. L. (1975). The development of the menstrual symptom questionnaire. Behaviour Research and Therapy, 13(4), 237-244. https://doi.org/10.1016/0005-7967(75)90028-5

Day, M., Bonnet, K., Schlundt, D. G., DeBaun, M., & Sharma, D. (2020). Vaso-occlusive pain and menstruation in sickle cell disease: A focus group analysis. Women’s Health Reports,1(1), 36-46. https://doi.org/10.1089/whr.2019.0008

Zempsky, W. T., O'Hara, E. A., Santanelli, J. P., Palermo, T. M., New, T., Smith-Whitley, K., & Casella, J. F. (2013). Validation of the sickle cell disease pain burden interview–Youth. Journal of Pain, 14, 975-982. https://doi.org/10.1016/j.jpain.2013.03.007

Protocol ID

881001

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX881001_SCD_Pain_Menstruation_Experience_Pain_Week_Before_Period
PX881001030000 Have you ever experienced "sickle cell pain" more
in the week before or during your period?" show less
N/A
PX881001_SCD_Pain_Menstruation_Experience_Pain_Week_Before_Period_How_Often
PX881001050000 If you answer "Yes" to question 3 above, how more
often do you have your "sickle cell pain" during your periods? If no, please skip this question." show less
N/A
PX881001_SCD_Pain_Menstruation_Experience_Pain_Week_Before_Period_When_Start
PX881001040000 If you answered 'Yes' to the question above more
(question 3) when you think of your last menstrual period when did you start to have "Sickle cell pain"? If no please skip this question. show less
N/A
PX881001_SCD_Pain_Menstruation_Identify_Triggers
PX881001010000 Have you been able to identify any triggers more
for your pain? show less
N/A
PX881001_SCD_Pain_Menstruation_Identify_Triggers_What
PX881001020000 If you answered yes to question 1, what more
triggers your pain? (Circle all that apply) show less
N/A
PX881001_SCD_Pain_Menstruation_Identify_Triggers_What_Other
PX881001020100 If you answered yes to question 1, what more
triggers your pain? (Circle all that apply) Other show less
N/A
SCD Genitourinary
Measure Name

Sickle Cell Disease Pain Associated with Menstruation

Release Date

August 15, 2023

Definition

This is a measure of menstrual-associated pain in females with sickle cell disease.

Purpose

Acute sickle cell pain episodes are associated with increased health care utilization, morbidity, and mortality. Acute sickle cell pain can be temporally associated with menstruation in participants with sickle cell disease, and the overlap between menstrual pain and sickle cell pain can be difficult to assess. This protocol can be useful in understanding this relationship between acute sickle cell pain and menstruation.

The Sickle Cell Disease Genitourinary Working Group (WG) strongly recommends investigators collect both Sickle Cell Disease Pain Associated with Menstruation and Sickle Cell Disease Pain Associated with Menstruation - Quality of Life to fully assess the impact of menstruation on sickle cell pain. Additionally, the WG recommends that investigators follow the scoring criteria to distinguish sickle cell pain and menstrual pain described in Table 1 of Sharma et al. (2019).

Keywords

dysmenorrhea, genitourinary, menstrual, menstruation, sickle cell disease, vaso-occlusive pain, women, period, sickle cell pain, pain

Measure Protocols
Protocol ID Protocol Name
881001 Sickle Cell Disease Pain Associated with Menstruation
Publications

There are no publications listed for this protocol.