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Protocol - Quality of Life - Adult

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Protocol Name from Source:

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

Availability:

Publicly available

Description:

This protocol includes 29 self-administered quality of life-type questions from the PROMIS® Profile 29 for adults. The quality of life questions include physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles and activities, and pain intensity over the past 7 days. Each question, except for the pain intensity question, is measured on a 5-point scale.

Protocol:

PROMIS©-29 Profile v2.0

Physical Function

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

1

Are you able to do chores such as vacuuming or yard work?

[ ]

[ ]

[ ]

[ ]

[ ]

2

Are you able to go up and down stairs at a normal pace

[ ]

[ ]

[ ]

[ ]

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3

Are you able to go for a walk of at least 15 minutes?

[ ]

[ ]

[ ]

[ ]

[ ]

4

Are you able to run errands and shop? ......

[ ]

[ ]

[ ]

[ ]

[ ]

Anxiety
In the past 7 days…

Never

Rarely

Sometimes

Often

Always

5

I felt fearful

[ ]

[ ]

[ ]

[ ]

[ ]

6

I found it hard to focus on anything other than my anxiety

[ ]

[ ]

[ ]

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7

My worries overwhelmed me

[ ]

[ ]

[ ]

[ ]

[ ]

8

I felt uneasy

[ ]

[ ]

[ ]

[ ]

[ ]

Depression
In the past 7 days...

Never

Rarely

Sometimes

Often

Always

9

I felt worthless

[ ]

[ ]

[ ]

[ ]

[ ]

10

I felt helpless

[ ]

[ ]

[ ]

[ ]

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11

I felt depressed

[ ]

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12

I felt hopeless

[ ]

[ ]

[ ]

[ ]

[ ]

Fatigue
During the past 7 days…

Not at all

A little bit

Somewhat

Quite a bit

Very much

13

I feel fatigued

[ ]

[ ]

[ ]

[ ]

[ ]

14

I have trouble starting things because I am tired

[ ]

[ ]

[ ]

[ ]

[ ]

Fatigue
In the past 7 days…

Not at all

A little bit

Somewhat

Quite a bit

Very much

15

How run-down did you feel on average?

[ ]

[ ]

[ ]

[ ]

[ ]

16

How fatigued were you on average?

[ ]

[ ]

[ ]

[ ]

[ ]

Sleep Disturbance
In the past 7 days…

Very poor

Poor

Fair

Good

Very good

17

My sleep quality was

[ ]

[ ]

[ ]

[ ]

[ ]

In the past 7 days…

Not at all

A little bit

Somewhat

Quite a bit

Very much

18

My sleep was refreshing

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[ ]

[ ]

[ ]

[ ]

19

I had a problem with my sleep

[ ]

[ ]

[ ]

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[ ]

20

I had difficulty falling asleep

[ ]

[ ]

[ ]

[ ]

[ ]

Ability to Participate in Social Roles and Activities

Never

Rarely

Sometimes

Often

Always

21

I have trouble doing all of my regular leisure activities with others.

[ ]

[ ]

[ ]

[ ]

[ ]

22

I have trouble doing all of the family activities that I want to do

[ ]

[ ]

[ ]

[ ]

[ ]

23

I have trouble doing all of my usual work (include work at home)

[ ]

[ ]

[ ]

[ ]

[ ]

24

I have trouble doing all of the activities with friends that I want to do

[ ]

[ ]

[ ]

[ ]

[ ]

Pain Interference
In the past 7 days…

Not at all

A little bit

Somewhat

Quite a bit

Very much

25

How much did pain interfere with your day to day activities?

[ ]

[ ]

[ ]

[ ]

[ ]

26

How much did pain interfere with work around the home?

[ ]

[ ]

[ ]

[ ]

[ ]

27

How much did pain interfere with your ability to participate in social activities?

[ ]

[ ]

[ ]

[ ]

[ ]

28

How much did pain interfere with your household chores?

[ ]

[ ]

[ ]

[ ]

[ ]

Pain Intensity
In the past 7 days…

29

How would you rate your pain on average?

[ ] 0

No pain

[ ] 1

[ ] 2

[ ] 3

[ ] 4

[ ] 5

[ ] 6

[ ] 7

[ ] 8

[ ] 9

[ ] 10

Worst imaginable pain

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:

Adult

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]].

Several questions in the PROMIS® Global Health protocol are also included in the Emotional Distress measure from the Gastrointestinal domain. Selecting the Global Health protocol and the Emotional Distress measure will result in some of the same questions being asked twice.

Research Domain Information

Release Date:

July 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

Standards

StandardNameIDSource
Common Data Elements (CDE)10 PROMIS Global Health Questionnaire General Rating Quality Of Life Score 5 Point Scale3628749CDE 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®-29 Profile v2.0 Adult Profile©. Available from www.assessmentcenter.net

For more information on PROMIS® see www.nihpromis.org

General References

Beaumont, J. L., Cella, D., Phan, A. T., Choi, S., Liu, Z., & Yao, J. C. (2012). Comparison of health-related quality of life in patients with neuroendocrine tumors with quality of life in the general U.S. population. Pancreas, 41(3), 461-466.

Butt, Z., Peipert, J., Webster, K., Chen, C., & Cella, D. (2013). General population norms for the Functional Assessment of Cancer Therapy-Kidney Symptom Index (FKSI). Cancer, 119(2), 429-437.

Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., DeVellis, R., DeWalt, D., Fries, J. F., Gershon, R., Hahn, E. A., Pilkonis, P., Revicki, D., Rose, M., Weinfurt, K., Hays, R., Lai, J-S, & on behalf of the PROMIS Cooperative Group. (2010). The Patient Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. Journal of Clinical Epidemiology, 63(11), 1179-1194.

Hinchcliff, M., Beaumont, J. L., Thavarahah, K., Varga, J., Chung, A., Podlusky, S., Carns, M., Chang, R. W., & Cella, D. (2011). Validity of two new patient-reported outcome measures in systemic sclerosis: Patient-reported outcomes measurement information system 29-item health profile and functional assessment of chronic illness therapy-dyspnea short form. Arthritis Care & Research, 63(11), 1620-1628.

Weaver, K. E., Forsythe, L. P., Reeve, B. B., Alfana, C. M., Rodrigues, J. L., Sabatino, S. A., Hawkins, N. A., & Rowland, J. H. (2012). Mental and physical health-related quality of life among U.S. cancer survivors: Population estimates from the 2010 National Health Interview Study. Cancer Epidemiology, Biomarkers & Prevention, 21(11), 2108-2117. doi:10.1158/1055-9965.EPI-12-0740.

Xia, T., Wilder, D. G., Gudavalli, M. R., DeVocht, J. W., Vining, R. D., Pohlman, K. A., Kawchuk, G. N., Long, C. R., & Goertz, C. M. (2014). Study protocol for patient response to spinal manipulation - a prospective observational clinical trial on physiological and patient-centered outcomes in patients with chronic low back pain. BMC Complementary and Alternative Medicine, 14(1), 292.

Protocol ID:

221302

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX221302_QualityOfLifeForAdults_Able_Do_ChoresPX221302010000Are you able to do chores such as vacuuming or yard work?4N/A
PX221302_QualityOfLifeForAdults_Able_UpDown_Stairs_NormalPX221302020000Are you able to go up and down stairs at a normal pace4N/A
PX221302_QualityOfLifeForAdults_Able_Walk_Least_15minutesPX221302030000Are you able to go for a walk of at least 15 minutes?4N/A
PX221302_QualityOfLifeForAdults_Able_Errands_ShopPX221302040000Are you able to run errands and shop? ......4N/A
PX221302_QualityOfLifeForAdults_Felt_Fearful_Past7daysPX221302050100In the past 7 days, I felt fearful4N/A
PX221302_QualityOfLifeForAdults_Hard_Focus_Anxiety_Past7daysPX221302050200In the past 7 days, I found it hard to focus on anything other than my anxiety4N/A
PX221302_QualityOfLifeForAdults_MyWorries_Overwhelmed_Past7daysPX221302050300In the past 7 days, My worries overwhelmed me4N/A
PX221302_QualityOfLifeForAdults_Felt_Uneasy_Past7daysPX221302050400In the past 7 days, I felt uneasy4N/A
PX221302_QualityOfLifeForAdults_Felt_Worthless_Past7daysPX221302050500In the past 7 days, I felt worthless4N/A
PX221302_QualityOfLifeForAdults_Felt_Helpless_Past7daysPX221302050600In the past 7 days, I felt helpless4N/A
PX221302_QualityOfLifeForAdults_Felt_Depressed_Past7daysPX221302050700In the past 7 days, I felt depressed4N/A
PX221302_QualityOfLifeForAdults_Felt_Hopeless_Past7daysPX221302050800In the past 7 days, I felt hopeless4N/A
PX221302_QualityOfLifeForAdults_Feel_Fatigued_Past7daysPX221302060100During the past 7 days, I feel fatigued4N/A
PX221302_QualityOfLifeForAdults_Trouble_Starting_Things_Past7daysPX221302060200During the past 7 days, I have trouble starting things because I am tired4N/A
PX221302_QualityOfLifeForAdults_Feel_Run_Down_Past7daysPX221302070100In the past 7 days, How run-down did you feel on average?4N/A
PX221302_QualityOfLifeForAdults_Fatigued_Average_Past7daysPX221302070200In the past 7 days, How fatigued were you on average?4N/A
PX221302_QualityOfLifeForAdults_Sleep_Quality_Past7daysPX221302080000In the past 7 days, My sleep quality was4N/A
PX221302_QualityOfLifeForAdults_Sleep_Refreshing_Past7daysPX221302090100In the past 7 days, My sleep was refreshing4N/A
PX221302_QualityOfLifeForAdults_Problem_With_Sleep_Past7daysPX221302090200In the past 7 days, I had a problem with my sleep4N/A
PX221302_QualityOfLifeForAdults_Difficulty_Falling_Asleep_Past7daysPX221302090300In the past 7 days, I had difficulty falling asleep4N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Leisure_ActivitiesPX221302100000I have trouble doing all of my regular leisure activities with others.4N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Family_ActivitiesPX221302110000I have trouble doing all of the family activities that I want to do4N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Usual_WorkPX221302120000I have trouble doing all of my usual work (include work at home)4N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Activities_FriendsPX221302130000I have trouble doing all of the activities with friends that I want to do4N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_Activities_Past7daysPX221302140100In the past 7 days, How much did pain interfere with your day to day activities?4N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_WorkAroundHome_Past7daysPX221302140200In the past 7 days, How much did pain interfere with work around the home?4N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_ParticipateSocial_Past7daysPX221302140300In the past 7 days, How much did pain interfere with your ability to participate in social activities?4N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_HouseholdChores_Past7daysPX221302140400In the past 7 days, How much did pain interfere with your household chores?4N/A
PX221302_QualityOfLifeForAdults_RatePain_OnAverage_Past7daysPX221302150000How would you rate your pain on average?4N/A