Loading…

Protocol - Sickle Cell Pain Burden Interview

Add to My Toolkit
Description

The Sickle Cell Pain Burden Interview (SCPBI) is a 7-item, interviewer-administered questionnaire designed to assess the impact of pain on physical, social, and emotional aspects of daily function in the past month. Each item is scored using a 5-point Likert rating scale, with a final summed score rating the overall severity of pain burden. 

Specific Instructions

None

Protocol

I want you to think about your pain in the last month:

  1. How many days have you had any pain?

None

A Few

Some

Many

Every

  1. How many nights have you slept poorly (trouble falling asleep, waking up during sleep) because of pain?

None

A Few

Some

Many

Every

  1. How many days have you had trouble taking care of yourself (dressing, going to the bathroom, showering) because of pain?

None

A Few

Some

Many

Every

  1. How many days have you missed school/work because of pain?

None

A Few

Some

Many

Every

  1. How many days have you left school/work early because of pain?

None

A Few

Some

Many

Every

  1. How many days have you been unable to do things you enjoy because of pain?

None

A Few

Some

Many

Every

  1. How many days have you felt sad, mad, or upset because of pain?

None

A Few

Some

Many

Every

Scoring

None = 0, A Few = 1, Some = 2, Many = 3, Every = 4

Scores range from 0 (no pain) to 28 (severe pain burden).

Availability

Available

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 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

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
StandardNameIDSource
caDSR Common Data Elements (CDE) Pain Sickle Cell Pain Burden Interview Assessment Score   7997168 CDE Browser
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 IDVariable DescriptiondbGaP Mapping
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.