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Protocol - Sickle Cell Disease Pain Location Body Map - Adult

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Description

The Sickle Cell Disease Pain Location Body Map - Adult protocol is one question from a wider self-administered pain diary that is completed daily. This protocol is used to record the previous days level of sickle cell disease (SCD)-related pain. Additionally, the wider Sickle Cell Pain Diary captures data about an individuals medication use, responses to pain, and SCD-related disability and distress. This protocol was validated in individuals aged 16 years and older.

Specific Instructions

The Sickle Cell Disease Pain Working Group recommends that only Question 6 of the Sickle Cell Pain Diary be completed to identify the location(s) where sickle cell disease-related pain was felt.

Protocol

On the body diagrams, place an X in each box where, due to sickle cell pain, you hurt yesterday

Bodymap front and back

Availability

Available

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

Adolescents and Adults aged 16 years and older

Selection Rationale

The self-administered pain diary from Smith et al. is a valid and reliable instrument for capturing the location of pain.

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Pain Sickle Cell Disease Pain Location Body Map-Adult Assessment Text 7997212 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Sickle Cell Pain Diary

Source

McClish, D. K., Smith, W. R., Dahman, B. A., Levenson, J. L., Roberts, J. D., Penberthy, L. T., Aisiku, I. P., Roseff, S. D., & Bovbjerg, V. E. (2009). Pain site frequency and location in sickle cell disease: The PiSCES project. Pain, 145(1-2), 246-251.

Smith, W. R., Bovbjerg, V. E., Penberthy, L. T., McClish, D. K., Levenson, J. L., Roberts, J. D., Gil, K., Roseff, S. D., & Aisiku, I. P. (2005). Understanding pain and improving management of sickle cell disease: The PiSCES study. Journal of the National Medical Association, 97(2), 183-193.

General References

McClish, D. K., Smith, W. R., Levenson, J. L., Aisiku, I. P., Roberts, J. D., Roseff, S. D., & Bovbjerg, V. E. (2017). Comorbidity, pain, utilization, and psychosocial outcomes in older versus younger sickle cell adults: The PiSCES project. BioMed Research International, 2017, 4070547.

Protocol ID

860601

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Pain
Measure Name

Pain Location

Release Date

May 18, 2022

Definition

This measure assesses the number and location of sites on the body where pain symptoms are felt.

Purpose

The number and location of pain sites vary significantly by age, frequency of pain, crisis, and utilization. Pain location can predict important behavioral outcomes, number of days where an individual experiences subjective vaso-occlusive crises, and unplanned utilization of hospitals.

Keywords

Pain, response to pain, sickle cell disease, SCD, location, site of pain, Sickle Cell Disease Pain Diary, PiSCES project

Measure Protocols
Protocol ID Protocol Name
860601 Sickle Cell Disease Pain Location Body Map - Adult
860602 Pain Location Body Map - Child
Publications

There are no publications listed for this protocol.