Protocol - Sickle Cell Pain Burden Interview

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "dont know" response is provided.

Equipment Needs

The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

Requirements

Requirement Category	Required
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

Interviewer-administered questionnaire

Lifestage

Child, Adolescent, Adult

Participants

Individuals aged 7- to 21-years-old with sickle cell disease

Selection Rationale

The Sickle Cell Pain Burden Interview (SCPBI) is a brief, validated, clinically relevant, and multi-dimensional interview to evaluate pain burden among individuals with sickle cell disease.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Sickle Cell Pain Burden Interview (SCPBI)

Source

Zempsky, W. T., OHara, 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(9), 975-982.

General References

Sil, S., Cohen, L. L., & Dampier, C. (2019). Pediatric pain screening identifies youth at risk of chronic pain in sickle cell disease. Pediatric Blood & Cancer, 66(3), e27538.

Protocol ID

860101

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX860101_Sickle_Cell_Pain_Burden_Interview_Days_Left_Early
	PX860101050000	I want you to think about your pain in the more last month: How many days have you left school/work early because of pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Days_Missed_School_Work
	PX860101040000	I want you to think about your pain in the more last month: How many days have you missed school/work because of pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Days_Pain
	PX860101010000	I want you to think about your pain in the more last month: How many days have you had any pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Days_Sad_Mad_Upset
	PX860101070000	I want you to think about your pain in the more last month: How many days have you felt sad, mad, or upset because of pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Days_Unable_Enjoyable_Activities
	PX860101060000	I want you to think about your pain in the more last month: How many days have you been unable to do things you enjoy because of pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Nights_Slept_Poorly
	PX860101020000	I want you to think about your pain in the more last month: How many nights have you slept poorly (trouble falling asleep, waking up during sleep) because of pain? show less	N/A
PX860101_Sickle_Cell_Pain_Burden_Interview_Self_Care
	PX860101030000	I want you to think about your pain in the more last month: How many days have you had trouble taking care of yourself (dressing, going to the bathroom, showering) because of pain? show less	N/A

SCD Pain

Measure Name

Pain Burden

Release Date

May 18, 2022

Definition

The physical, social, emotional, and economic impact that chronic pain can have on an individual's everyday life.

Purpose

Chronic pain impacts many important functions of daily life. Quantifying the burden pain has on an individual's day-to-day life can enable changes in response to intervention to be assessed over time. Additionally, this may allow physicians/researchers to categorize individuals into different risk groups based upon their pain burden.

Keywords

pain, pain burden, sickle cell, sickle cell disease, SCD, sickle cell disease pain, SCPBI

Measure Protocols

Protocol ID	Protocol Name
860101	Sickle Cell Pain Burden Interview

Publications

There are no publications listed for this protocol.