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Protocol - Pain Interference - Parent Proxy

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Description

The Patient-Reported Outcome Measurement Information System (PROMIS®) Parent Proxy Item Bank v2.0 - Pain Interference - Short Form 8a is an 8-item parent proxy-report questionnaire that assesses how pain impacts a childs daily activities of living and the enjoyment of those activities. This protocol was validated in parents of children and adolescents aged 5- to 17-years-old.

Specific Instructions

The PhenX Working Group recommends this PROMISĀ® protocol. For additional information regarding PROMISĀ® instruments (including scoring, validity, and interpretation) please visit: www.healthmeasures.net. For specific information about this instrument, please visit: www.healthmeasures.net/index.php?option=com_instruments&view=measure&id=740&Itemid=992

Protocol

PROMIS® Parent Proxy Item Bank v2.0 - Pain Interference - Short Form 8a


In the past 7 days…


1. My child had trouble sleeping when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


2. My child felt angry when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


3. My child had trouble doing schoolwork when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


4. It was hard for my child to pay attention when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


5. It was hard for my child to run when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


6. It was hard for my child to walk one block when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


7. It was hard for my child to have fun when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always


8. It was hard for my child to stay standing when he/she had pain.

1 [ ] Never

2 [ ] Almost Never

3 [ ] Sometimes

4 [ ] Often

5 [ ] Almost Always

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

Child, Adolescent

Participants

Parent serving as a proxy reporter for their child (youth aged 5- to 17-years-old)

Selection Rationale

Patient-Reported Outcomes Measurement Information System (PROMIS®) measures are psychometrically robust and pediatric PROMIS measures connect to adult PROMIS measures, for comparison across the lifespan. Having both self and parent/proxy report available is important for use with the pediatric population.

Language

Dutch, English, French, German, Icelandic, Italian, Japanese, Mandarin Chinese, Portuguese, Spanish, Turkish

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Pain Interference-Parent Proxy Assessment Score 7997208 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Patient-Reported Outcome Measurement Information System (PROMIS®) Parent Proxy Item Bank v2.0 - Pain Interference - Short Form 8a

Source

Irwin, D. E., Gross, H. E., Stucky, B. D., Thissen, D., DeWitt, E. M., Lai, J-S., Amtmann, D., Khastou, L., Varni, J. W., & DeWalt, D. A. (2012). Development of six PROMIS pediatrics proxy-report item banks. Health and Quality of Life Outcomes, 10, 22.

General References

Amtmann, D., Cook, K. F., Jensen, M. P., Chen, W. H., Choi, S., Revicki, D., Cella, D., Rothrock, N., Keefe, F., Callahan, L., & Lai, J-S. (2010). Development of a PROMIS item bank to measure pain interference. Pain, 150(1), 173-182.

Dampier, C., Barry, V., Gross, H. E., Lui, Y., Thornburg, C. D., DeWalt, D. A., & Reeve, B. B. (2016). Initial evaluation of the pediatric PROMIS® health domains in children and adolescents with sickle cell disease. Pediatric Blood & Cancer, 63(6), 1031-1037.

Singh, A., & Panepinto, J. A. (2019). Clinical meaning of PROMIS pain domains for children with sickle cell disease. Blood Advances, 3(15), 2244-2249.

Varni, J. W., Thissen, D., Stucky, B. D., Liu, Y., Magnus, B., Quinn, H., Irwin, D. E., DeWitt, E. M., Lai, J-S., Amtmann, D., Gross, H. E., & DeWalt, D. A. (2014). PROMIS® Parent Proxy Report Scales for children ages 5-7 years: An item response theory analysis of differential item functioning across age groups. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(1), 349-361

Protocol ID

860503

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX860503_Pain_Interference_Parent_Proxy_Angry
PX860503020000 In the past 7 days, my child felt angry when more
he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Fun
PX860503070000 In the past 7 days, it was hard for my child more
to have fun when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Pay_Attention
PX860503040000 In the past 7 days, it was hard for my child more
to pay attention when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Run
PX860503050000 In the past 7 days, it was hard for my child more
to run when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Schoolwork
PX860503030000 In the past 7 days, my child had trouble more
doing schoolwork when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Sleeping
PX860503010000 In the past 7 days, my child had trouble more
sleeping when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Standing
PX860503080000 In the past 7 days, it was hard for my child more
to stay standing when he/she had pain. show less
N/A
PX860503_Pain_Interference_Parent_Proxy_Walk
PX860503060000 In the past 7 days, it was hard for my child more
to walk one block when he/she had pain. show less
N/A
Pain
Measure Name

Pain Interference

Release Date

May 18, 2022

Definition

The extent to which the experience of pain interferes with a person's daily life. 

Purpose

Pain is a complex multidimensional experience that extends beyond its presence and severity. The presence of pain can have an impact on an individual's quality of life including interfering with activities at home, socially, and in the general enjoyment of life. This measure provides a comprehensive assessment of how a person's pain is interfering across different factors.

Keywords

Pain, sickle cell disease, Patient-Reported Outcomes Measurement Information System, PROMIS®, National Institutes of Health, NIH

Measure Protocols
Protocol ID Protocol Name
860501 Pain Interference - Adult
860502 Pain Interference - Child
860503 Pain Interference - Parent Proxy
Publications

There are no publications listed for this protocol.