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Protocol - Quality of Life - Pediatric

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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

Protocol Name from Source:

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

Availability:

Publicly 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- or proxy-administered questionnaire

Life Stage:

Child, Adolescent

Participants:

Children age 8-17 years old (parent proxy for children age 5-17 years old)

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: 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.

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 Text 4798272 CDE 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_Anxiety_Nervous PX221301060000 In the past 7 days I felt nervous 4 N/A
PX221301_Pediatric_QOL_Anxiety_Something_Awful PX221301050000 In the past 7 days I felt like something awful might happen 4 N/A
PX221301_Pediatric_QOL_Anxiety_Worried PX221301070000 In the past 7 days I felt worried 4 N/A
PX221301_Pediatric_QOL_Anxiety_Worried_AtHome PX221301080000 In the past 7 days I worried when I was at home 4 N/A
PX221301_Pediatric_QOL_Depressive_EverythingWrong PX221301090000 In the past 7 days I felt everything in my life went wrong 4 N/A
PX221301_Pediatric_QOL_Depressive_Hardto_HaveFun PX221301120000 In the past 7 days it was hard for me to have fun 4 N/A
PX221301_Pediatric_QOL_Depressive_Lonely PX221301100000 In the past 7 days I felt lonely 4 N/A
PX221301_Pediatric_QOL_Depressive_Sad PX221301110000 In the past 7 days I felt sad 4 N/A
PX221301_Pediatric_QOL_Fatigure_Tired_SchoolworkHard PX221301130000 In the past 7 days being tired made it hard for me to keep up with my schoolwork 4 N/A
PX221301_Pediatric_QOL_Fatigure_Tire_Easily PX221301140000 In the past 7 days I got tired easily 4 N/A
PX221301_Pediatric_QOL_Fatigure_TooTired_Exercise PX221301150000 In the past 7 days I was too tired to do sports or other exercise 4 N/A
PX221301_Pediatric_QOL_Fatigure_TooTire_Enjoyment PX221301160000 In the past 7 days I was too tired to enjoy the things I like to do 4 N/A
PX221301_Pediatric_QOL_How_Bad_Was_Pain_Average PX221301250000 In the past 7 days how bad was your pain on average? 4 N/A
PX221301_Pediatric_QOL_PainInteference_AttentionHard_Pain PX221301220000 In the past 7 days it was hard for me to pay attention when I had pain 4 N/A
PX221301_Pediatric_QOL_PainInteference_HardWalk_Pain PX221301240000 In the past 7 days it was hard for me to walk one block when I had pain 4 N/A
PX221301_Pediatric_QOL_PainInteference_RunningHard_Pain PX221301230000 In the past 7 days it was hard for me to run when I had pain 4 N/A
PX221301_Pediatric_QOL_PainInteference_TroubleSleep_Pain PX221301210000 In the past 7 days I had trouble sleeping when I had pain 4 N/A
PX221301_Pediatric_QOL_PeerRelationships_Count_Friends PX221301180000 In the past 7 days I was able to count on my friends 4 N/A
PX221301_Pediatric_QOL_PeerRelationships_Felt_Accepted PX221301170000 In the past 7 days I felt accepted by other kids my age 4 N/A
PX221301_Pediatric_QOL_PeerRelationships_Friends_Helped PX221301190000 In the past 7 days my friends and I helped each other out 4 N/A
PX221301_Pediatric_QOL_PeerRelationships_Kids_MyFriends PX221301200000 In the past 7 days other kids wanted to be my friend 4 N/A
PX221301_Pediatric_QOL_PhysicalFunction_Activities_Enjoy PX221301040000 In the past 7 days I have been physically able to do the activities I enjoy most 4 N/A
PX221301_Pediatric_QOL_PhysicalFunction_Exercise PX221301010000 In the past 7 days I could do sports and exercise that other kids my age could do 4 N/A
PX221301_Pediatric_QOL_PhysicalFunction_GetUp_Floor PX221301020000 In the past 7 days I could get up from the floor 4 N/A
PX221301_Pediatric_QOL_PhysicalFunction_Walk_Stairs PX221301030000 In the past 7 days I could walk up stairs without holding on to anything 4 N/A
Research Domain Information
Measure Name:

Quality of Life

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.

Keywords

Quality of Life, PROMIS, PROMIS-29, PROMIS Pediatric Profile 25, Patient-reported outcomes, Pain, Sleep, Function, Depression, Anxiety, Physical function, Social roles, Patient-Reported Outcomes Measurement Information System, PROMIS©, quality of life, qol, toddler, child, children, pediatrics, adolescent, physical function, mobility, fatigue, peer relationship, pain interference, pain intensity