Protocol - Quality of Life - Pediatric

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.

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=102&Itemid=992

Availability

Available

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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

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- or proxy-administered questionnaire

Lifestage

Child, Adolescent

Participants

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

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, Other languages available at source

Standards

Standard	Name	ID	Source
caDSR Form	PhenX PX221301 - Pediatric Quality Of Life	6201762	caDSR Form

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Patient-Reported Outcomes Measurement Information System® (PROMIS) Item Bank, v.1.1, Pediatric Profile 25

Source

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 Name	Variable ID	Variable Description	dbGaP Mapping
PX221301_Pediatric_QOL_Anxiety_Nervous
	PX221301060000	In the past 7 days I felt nervous	Variable Mapping
PX221301_Pediatric_QOL_Anxiety_Something_Awful
	PX221301050000	In the past 7 days I felt like something more awful might happen show less	N/A
PX221301_Pediatric_QOL_Anxiety_Worried
	PX221301070000	In the past 7 days I felt worried	N/A
PX221301_Pediatric_QOL_Anxiety_Worried_AtHome
	PX221301080000	In the past 7 days I worried when I was at home	N/A
PX221301_Pediatric_QOL_Depressive_EverythingWrong
	PX221301090000	In the past 7 days I felt everything in my more life went wrong show less	N/A
PX221301_Pediatric_QOL_Depressive_Hardto_HaveFun
	PX221301120000	In the past 7 days it was hard for me to have fun	N/A
PX221301_Pediatric_QOL_Depressive_Lonely
	PX221301100000	In the past 7 days I felt lonely	N/A
PX221301_Pediatric_QOL_Depressive_Sad
	PX221301110000	In the past 7 days I felt sad	Variable Mapping
PX221301_Pediatric_QOL_Fatigure_Tired_SchoolworkHard
	PX221301130000	In the past 7 days being tired made it hard more for me to keep up with my schoolwork show less	N/A
PX221301_Pediatric_QOL_Fatigure_Tire_Easily
	PX221301140000	In the past 7 days I got tired easily	N/A
PX221301_Pediatric_QOL_Fatigure_TooTired_Exercise
	PX221301150000	In the past 7 days I was too tired to do more sports or other exercise show less	N/A
PX221301_Pediatric_QOL_Fatigure_TooTire_Enjoyment
	PX221301160000	In the past 7 days I was too tired to enjoy more the things I like to do show less	N/A
PX221301_Pediatric_QOL_How_Bad_Was_Pain_Average
	PX221301250000	In the past 7 days how bad was your pain on more average? show less	N/A
PX221301_Pediatric_QOL_PainInteference_AttentionHard_Pain
	PX221301220000	In the past 7 days it was hard for me to pay more attention when I had pain show less	N/A
PX221301_Pediatric_QOL_PainInteference_HardWalk_Pain
	PX221301240000	In the past 7 days it was hard for me to more walk one block when I had pain show less	N/A
PX221301_Pediatric_QOL_PainInteference_RunningHard_Pain
	PX221301230000	In the past 7 days it was hard for me to run more when I had pain show less	N/A
PX221301_Pediatric_QOL_PainInteference_TroubleSleep_Pain
	PX221301210000	In the past 7 days I had trouble sleeping more when I had pain show less	N/A
PX221301_Pediatric_QOL_PeerRelationships_Count_Friends
	PX221301180000	In the past 7 days I was able to count on my more friends show less	N/A
PX221301_Pediatric_QOL_PeerRelationships_Felt_Accepted
	PX221301170000	In the past 7 days I felt accepted by other more kids my age show less	N/A
PX221301_Pediatric_QOL_PeerRelationships_Friends_Helped
	PX221301190000	In the past 7 days my friends and I helped more each other out show less	N/A
PX221301_Pediatric_QOL_PeerRelationships_Kids_MyFriends
	PX221301200000	In the past 7 days other kids wanted to be more my friend show less	N/A
PX221301_Pediatric_QOL_PhysicalFunction_Activities_Enjoy
	PX221301040000	In the past 7 days I have been physically more able to do the activities I enjoy most show less	N/A
PX221301_Pediatric_QOL_PhysicalFunction_Exercise
	PX221301010000	In the past 7 days I could do sports and more exercise that other kids my age could do show less	N/A
PX221301_Pediatric_QOL_PhysicalFunction_GetUp_Floor
	PX221301020000	In the past 7 days I could get up from the floor	N/A
PX221301_Pediatric_QOL_PhysicalFunction_Walk_Stairs
	PX221301030000	In the past 7 days I could walk up stairs more without holding on to anything show less	N/A

Rare Genetic Conditions

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, gerontology, aging, geriatrics

Measure Protocols

Protocol ID	Protocol Name
221301	Quality of Life - Pediatric
221302	Quality of Life - Adult

Publications

There are no publications listed for this protocol.

Mapping for PX221301_Pediatric_QOL_Anxiety_Nervous

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Genome Wide Association Study of Chronic TMD: Discovery Phase	phv00260635	POMS 17. During the last week including today, I have been feeling: nervous.

Mapping for PX221301_Pediatric_QOL_Depressive_Sad

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Framingham Cohort	phv00006432	CES-D - PLEASE SAY IF YOU FELT THAT WAY DURING THE PAST WEEK: I FELT SAD.
Framingham Cohort	phv00022491	DURING THE PAST WEEK, I FELT SAD. [DEPRESSION SCALE]
Framingham Cohort	phv00177674	CES-D Scale-Technician administered: During the past week I felt sad.
Framingham Cohort	phv00251177	CES-D Scale: During the past week - I felt sad
Framingham Cohort	phv00254454	CES-D Scale-Tech administered: Please say how you felt during the past week: I felt sad.
Framingham Cohort	phv00254984	CES-D Scale: During the past week, I felt sad.
Framingham Cohort	phv00255306	CES-D Scale - During the past week, I felt sad.
Genome Wide Association Study of Chronic TMD: Discovery Phase	phv00260626	POMS 8. During the last week including today, I have been feeling: sad.
GWAS on Cataract and HDL in the PMRP	phv00181467	Please indicate the one response to each item that best describes you for the past seven days. Feeling Sad:
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00082938	FELT SAD, PAST WEEK
Multi-Ethnic Study of Atherosclerosis (MESA) Cohort	phv00084745	FELT SAD, PAST WEEK

Protocol - Quality of Life - Pediatric

Related Protocols:

Essential Protocols:

Description

Specific Instructions

Availability

Protocol

Personnel and Training Required

Equipment Needs

Requirements

Mode of Administration

Lifestage

Participants

Selection Rationale

Language

Standards

Derived Variables

Process and Review

Protocol Name from Source

Source

General References

Protocol ID

Variables

Measure Name

Release Date

Definition

Purpose

Keywords

Measure Protocols

Publications