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Protocol - Quality of Life - Pediatric

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Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Description:

PROMIS© Version 1.1 Pediatric Profile 25 consists of seven item banks. There is one bank for physical function mobility, anxiety, depressive symptoms, fatigue, peer relationships, pain interference, and pain intensity. For each question, the respondent is asked to reflect on the past 7 days.

The pain intensity item bank contains one question with a 10-point answer scale. The other banks each contain four questions, and each question has a 5-point answer scale.

PROMIS© 25 is administrated as a self-reported questionnaire for children aged 8-17 or via a parent proxy for children aged 5-17. A pediatric proxy item bank was developed for those aged 5-17 years as part of PROMIS to address the need for health status instruments reflecting the perspectives of both the child and parent in cases where a child is too young, cognitively impaired, or unwell to complete a patient-reported outcome instrument and a parent proxy report is required.

Protocol:

Please respond to each question or statement by marking one box per row.

Physical Function Mobility

In the past 7 days…

With no trouble With a little trouble With some trouble With a lot of trouble Not able
1. I could do sports and exercise that other kids my age could do………………. [ ] 4 [ ] 3 [ ] 2 [ ] 1 [ ] 0
2. I could get up from the floor....... [ ] 4 [ ] 3 [ ] 2 [ ] 1 [ ] 0
3. I could walk up stairs without holding on to anything………… [ ] 4 [ ] 3 [ ] 2 [ ] 1 [ ] 0
4. I have been physically able to do the activities I enjoy most……………. [ ] 4 [ ] 3 [ ] 2 [ ] 1 [ ] 0

Anxiety

In the past 7 days…

Never Almost Never Sometimes Often Almost Always
5. I felt like something awful might happen……… [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
6. I felt nervous…. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
7. I felt worried….. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
8. I worried when I was at home…. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4

Depressive Symptoms

In the past 7 days…

Never Almost Never Sometimes Often Almost Always
9. I felt everything in my life went wrong…………. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
10. I felt lonely……. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
11. I felt sad………. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
12. It was hard for me to have fun………. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4

Fatigue

In the past 7 days…

Never Almost Never Sometimes Often Almost Always
13. Being tired made it hard for me to keep up with my schoolwork…….. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
14. I got tired easily… [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
15. I was too tired to do sports or exercise………….. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
16. I was too tired to enjoy the things I like to do…………. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4

Peer Relationships

In the past 7 days…

Never Almost Never Sometimes Often Almost Always
17. I felt accepted by other kids my age…………….. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
18. I was able to count on my friends……. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
19. My friends and I helped each other out………………. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
20. Other kids wanted to be my friend….. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4

Pain Interference

In the past 7 days…

Never Almost Never Sometimes Often Almost Always
21. I had trouble sleeping when I had pain………… [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
22. It was hard for me to pay attention when I had pain…. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
23. It was hard for me to run when I had pain [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4
24. It was hard for me to walk one block when I had pain…. [ ] 0 [ ] 1 [ ] 2 [ ] 3 [ ] 4

Pain Intensity

In the past 7 days…

25. How bad was your pain on average? ... [ ] 0 No Pain [ ] 1 [ ] 2 [ ] 3 [ ] 4 [ ] 5 [ ] 6 [ ] 7 [ ] 8 [ ] 9 [ ] 10 Worst pain you can think of

Investigator Format ©2008-2013 PROMIS Health Organization and PROMIS Cooperative Group

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Child, Adolescent

Specific Instructions:

Additional information about PROMIS© instruments-including the item bank development history, available banks, domain definitions, administration, scoring, validity, and interpretation-is available on the PROMIS© website: [link[www.nihpromis.org|www.nihpromis.org]]. As of fall 2014, per the PROMIS© website, PROMIS© 25 is available in English and Spanish; however, other translations are in development.

Research Domain Information

Release Date:

April 30, 2015

Definition

This is a measure to assess quality of life (QOL) based on how the individual has felt over the past 7 days.

Purpose

Information collected from this questionnaire can be used to assess the individual’s current quality of life, which may influence emotional and physical problems.

Selection Rationale

The PROMIS© protocols have been tested and have been found to be reliable and comparable to established measures of these same content areas. Additionally, they are quick and easy to administer, either via paper and pencil or as a computer-based instrument.

Language

English, Spanish

Standards

StandardNameIDSource
Common Data Elements (CDE)Pediatric Quality of Life Questionnaire Assessment Text4798272CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

U.S. Department of Health and Human Services. National Institutes of Health (NIH). PROMIS© 25 Profile - v.1.1.

General References

Bevans, M., Ross, A., & Cella, D. (2014). Patient-Reported Outcomes Measurement Information System (PROMIS): Efficient, standardized tools to measure self-reported health and quality of life. Nursing Outlook, 62, 339-345.

DeWitt, E. M., Barnett, K., Farrell, J., Revicki, D., Carle, A., Cook, K., Sherry, D. D. (2014). A164: Development of pediatric item banks to measure pain behavior in the Patient-Reported Outcomes Measurement Information System. Arthritis & Rheumatology, 66(Suppl. 11), S212-S2121.

Protocol ID:

221301

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX221301_Pediatric_QOL_PhysicalFunction_ExercisePX221301010000In the past 7 days I could do sports and exercise that other kids my age could do4N/A
PX221301_Pediatric_QOL_PhysicalFunction_GetUp_FloorPX221301020000In the past 7 days I could get up from the floor4N/A
PX221301_Pediatric_QOL_PhysicalFunction_Walk_StairsPX221301030000In the past 7 days I could walk up stairs without holding on to anything4N/A
PX221301_Pediatric_QOL_PhysicalFunction_Activities_EnjoyPX221301040000In the past 7 days I have been physically able to do the activities I enjoy most4N/A
PX221301_Pediatric_QOL_Anxiety_Something_AwfulPX221301050000In the past 7 days I felt like something awful might happen4N/A
PX221301_Pediatric_QOL_Anxiety_NervousPX221301060000In the past 7 days I felt nervous4N/A
PX221301_Pediatric_QOL_Anxiety_WorriedPX221301070000In the past 7 days I felt worried4N/A
PX221301_Pediatric_QOL_Anxiety_Worried_AtHomePX221301080000In the past 7 days I worried when I was at home4N/A
PX221301_Pediatric_QOL_Depressive_EverythingWrongPX221301090000In the past 7 days I felt everything in my life went wrong4N/A
PX221301_Pediatric_QOL_Depressive_LonelyPX221301100000In the past 7 days I felt lonely4N/A
PX221301_Pediatric_QOL_Depressive_SadPX221301110000In the past 7 days I felt sad4N/A
PX221301_Pediatric_QOL_Depressive_Hardto_HaveFunPX221301120000In the past 7 days it was hard for me to have fun4N/A
PX221301_Pediatric_QOL_Fatigure_Tired_SchoolworkHardPX221301130000In the past 7 days being tired made it hard for me to keep up with my schoolwork4N/A
PX221301_Pediatric_QOL_Fatigure_Tire_EasilyPX221301140000In the past 7 days I got tired easily4N/A
PX221301_Pediatric_QOL_Fatigure_TooTired_ExercisePX221301150000In the past 7 days I was too tired to do sports or other exercise4N/A
PX221301_Pediatric_QOL_Fatigure_TooTire_EnjoymentPX221301160000In the past 7 days I was too tired to enjoy the things I like to do4N/A
PX221301_Pediatric_QOL_PeerRelationships_Felt_AcceptedPX221301170000In the past 7 days I felt accepted by other kids my age4N/A
PX221301_Pediatric_QOL_PeerRelationships_Count_FriendsPX221301180000In the past 7 days I was able to count on my friends4N/A
PX221301_Pediatric_QOL_PeerRelationships_Friends_HelpedPX221301190000In the past 7 days my friends and I helped each other out4N/A
PX221301_Pediatric_QOL_PeerRelationships_Kids_MyFriendsPX221301200000In the past 7 days other kids wanted to be my friend4N/A
PX221301_Pediatric_QOL_PainInteference_TroubleSleep_PainPX221301210000In the past 7 days I had trouble sleeping when I had pain4N/A
PX221301_Pediatric_QOL_PainInteference_AttentionHard_PainPX221301220000In the past 7 days it was hard for me to pay attention when I had pain4N/A
PX221301_Pediatric_QOL_PainInteference_RunningHard_PainPX221301230000In the past 7 days it was hard for me to run when I had pain4N/A
PX221301_Pediatric_QOL_PainInteference_HardWalk_PainPX221301240000In the past 7 days it was hard for me to walk one block when I had pain4N/A
PX221301_Pediatric_QOL_How_Bad_Was_Pain_AveragePX221301250000In the past 7 days how bad was your pain on average?4N/A