Protocol - Pain Interference - Parent Proxy
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 PROMIS® protocol. For additional information regarding PROMIS® 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
Availability
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
Personnel and Training Required
None
Equipment Needs
None
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
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
English, Other languages available at source
Standards
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX860503_Pain_Interference_Parent_Proxy_Angry | ||||
| PX860503020000 | In the past 7 days, my child felt angry when more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Fun | ||||
| PX860503070000 | In the past 7 days, it was hard for my child more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Pay_Attention | ||||
| PX860503040000 | In the past 7 days, it was hard for my child more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Run | ||||
| PX860503050000 | In the past 7 days, it was hard for my child more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Schoolwork | ||||
| PX860503030000 | In the past 7 days, my child had trouble more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Sleeping | ||||
| PX860503010000 | In the past 7 days, my child had trouble more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Standing | ||||
| PX860503080000 | In the past 7 days, it was hard for my child more | N/A | ||
| PX860503_Pain_Interference_Parent_Proxy_Walk | ||||
| PX860503060000 | In the past 7 days, it was hard for my child more | N/A | ||
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.