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Protocol - Sickle Cell Disease Pain Associated with Menstruation - Quality of Life

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Description

The modified version of the Sickle Cell Disease Pain Burden Interview–Youth (SCPBI-Y) is a 7-item, self-administered questionnaire to document the burden of sickle cell pain associated with the participant’s last menstrual period. Each item is scored on a five-point Likert scale (1 = None; 5 = Every) indicating the number of days impacted by sickle cell pain. The scores from each item can be summed to give a total score, with higher scores indicating higher pain burden and impact on quality of life.

Specific Instructions

Although validated in participants of ages up to and including 21 years, the Sickle Cell Disease Genitourinary Working Group (WG) recommends that the instrument can be used in older populations.

The WG 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 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

Protocol

Modified version of the Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y)

I want you to think about your sickle cell pain experienced 7 days before or during your last menstrual period:

  1. How many days have you had any sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many nights have you slept poorly (trouble falling asleep or waking up during sleep) because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many days have you had trouble taking care of yourself (dressing, going to the bathroom, showering) because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many days have you missed from school/work because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many days have you left school/work early because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many days have you been unable to do things you enjoy because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

  1. How many days have you felt sad, mad, or upset because of sickle cell pain during this menstrual period?
  [ ] 1 None
  [ ] 2 A Few
  [ ] 3 Some
  [ ] 4 Many
  [ ] 5 Every

Scoring:
“None” = 0, “A Few” = 1, “Some” = 2, “Many” = 3, and “Every” = 4.
Scores range from 0 to 28; that is, no pain burden to severe pain burden.

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

Child, Adolescent, Adult

Participants

Menstruating participants with sickle cell disease that have had one or more menstrual periods.

Selection Rationale

This measurement protocol records the impact of sickle cell pain on daily living during menstruation and the impact of that pain. For participants with sickle cell disease, this information is important to understanding the overlap of menstrual-associated pain with acute “sickle cell” pain and its impact on quality of life. Use of one or more scales (e.g., measuring acute “sickle cell” pain and menstrual pain) may be most helpful in understanding this overlap.

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Modified version of the Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y)

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

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

881101

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_During_Period
PX881101010000 How many days have you had any sickle cell more
pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_Left_School_Work_Period
PX881101050000 How many days have you left school/work more
early because of sickle cell pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_Missed_School_Work_Period
PX881101040000 How many days have you missed from more
school/work because of sickle cell pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_Sad_Mad_Upset_Period
PX881101070000 How many days have you felt sad, mad, or more
upset because of sickle cell pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_Trouble_Care_Self_Period
PX881101030000 How many days have you had trouble taking more
care of yourself (dressing, going to the bathroom, showering) because of sickle cell pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Days_Unable_Do_Things_Enjoy_Period
PX881101060000 How many days have you been unable to do more
things you enjoy because of sickle cell pain during this menstrual period? show less
N/A
PX881101_SCD_Pain_Menstruation_Quality_Of_Life_Nights_Slept_Poorly_Period
PX881101020000 How many nights have you slept poorly more
(trouble falling asleep or waking up during sleep) because of sickle cell pain during this menstrual period? show less
N/A
SCD Genitourinary
Measure Name

Sickle Cell Disease Pain Associated with Menstruation - Quality of Life

Release Date

August 15, 2023

Definition

This is a measure of the impact of acute “sickle cell” pain associated with menstruation on mood, daily functioning, and quality of life.

Purpose

Acute “sickle cell” pain may 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 pain can impact activities of daily living as well as sleep, mood, and school/work and is associated with increased healthcare utilization.

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
881101 Sickle Cell Disease Pain Associated with Menstruation - Quality of Life
Publications

There are no publications listed for this protocol.