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Protocol - Quality of Life - Adult

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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.

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=213&Itemid=992

Availability

Available

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

[ ]

[ ]

[ ]

[ ]

[ ]

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

[ ]

[ ]

[ ]

[ ]

[ ]

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

[ ]

[ ]

[ ]

[ ]

[ ]

11

I felt depressed

[ ]

[ ]

[ ]

[ ]

[ ]

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

[ ]

[ ]

[ ]

[ ]

[ ]

19

I had a problem with my sleep

[ ]

[ ]

[ ]

[ ]

[ ]

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
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

Adult

Participants

Adults aged 18 years and older

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
caDSR Form PhenX PX221302 - Quality Of Life - Adult 6889078 caDSR Form
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Patient-Reported Outcomes Measurement Information System® (PROMIS) 29 Profile, v. 2.0 Adult Profile

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 Name Variable IDVariable DescriptiondbGaP Mapping
PX221302_QualityOfLifeForAdults_Able_Do_Chores
PX221302010000 Are you able to do chores such as vacuuming more
or yard work? show less
N/A
PX221302_QualityOfLifeForAdults_Able_Errands_Shop
PX221302040000 Are you able to run errands and shop? ...... N/A
PX221302_QualityOfLifeForAdults_Able_UpDown_Stairs_Normal
PX221302020000 Are you able to go up and down stairs at a more
normal pace show less
N/A
PX221302_QualityOfLifeForAdults_Able_Walk_Least_15minutes
PX221302030000 Are you able to go for a walk of at least 15 more
minutes? show less
N/A
PX221302_QualityOfLifeForAdults_Difficulty_Falling_Asleep_Past7days
PX221302090300 In the past 7 days, I had difficulty falling more
asleep show less
N/A
PX221302_QualityOfLifeForAdults_Fatigued_Average_Past7days
PX221302070200 In the past 7 days, How fatigued were you on more
average? show less
N/A
PX221302_QualityOfLifeForAdults_Feel_Fatigued_Past7days
PX221302060100 During the past 7 days, I feel fatigued N/A
PX221302_QualityOfLifeForAdults_Feel_Run_Down_Past7days
PX221302070100 In the past 7 days, How run-down did you more
feel on average? show less
N/A
PX221302_QualityOfLifeForAdults_Felt_Depressed_Past7days
PX221302050700 In the past 7 days, I felt depressed N/A
PX221302_QualityOfLifeForAdults_Felt_Fearful_Past7days
PX221302050100 In the past 7 days, I felt fearful N/A
PX221302_QualityOfLifeForAdults_Felt_Helpless_Past7days
PX221302050600 In the past 7 days, I felt helpless N/A
PX221302_QualityOfLifeForAdults_Felt_Hopeless_Past7days
PX221302050800 In the past 7 days, I felt hopeless N/A
PX221302_QualityOfLifeForAdults_Felt_Uneasy_Past7days
PX221302050400 In the past 7 days, I felt uneasy N/A
PX221302_QualityOfLifeForAdults_Felt_Worthless_Past7days
PX221302050500 In the past 7 days, I felt worthless N/A
PX221302_QualityOfLifeForAdults_Hard_Focus_Anxiety_Past7days
PX221302050200 In the past 7 days, I found it hard to focus more
on anything other than my anxiety show less
N/A
PX221302_QualityOfLifeForAdults_MyWorries_Overwhelmed_Past7days
PX221302050300 In the past 7 days, My worries overwhelmed me N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_Activities_Past7days
PX221302140100 In the past 7 days, How much did pain more
interfere with your day to day activities? show less
N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_HouseholdChores_Past7days
PX221302140400 In the past 7 days, How much did pain more
interfere with your household chores? show less
N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_ParticipateSocial_Past7days
PX221302140300 In the past 7 days, How much did pain more
interfere with your ability to participate in social activities? show less
N/A
PX221302_QualityOfLifeForAdults_Pain_Interfere_WorkAroundHome_Past7days
PX221302140200 In the past 7 days, How much did pain more
interfere with work around the home? show less
N/A
PX221302_QualityOfLifeForAdults_Problem_With_Sleep_Past7days
PX221302090200 In the past 7 days, I had a problem with my sleep N/A
PX221302_QualityOfLifeForAdults_RatePain_OnAverage_Past7days
PX221302150000 How would you rate your pain on average? N/A
PX221302_QualityOfLifeForAdults_Sleep_Quality_Past7days
PX221302080000 In the past 7 days, My sleep quality was N/A
PX221302_QualityOfLifeForAdults_Sleep_Refreshing_Past7days
PX221302090100 In the past 7 days, My sleep was refreshing N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Activities_Friends
PX221302130000 I have trouble doing all of the activities more
with friends that I want to do show less
N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Family_Activities
PX221302110000 I have trouble doing all of the family more
activities that I want to do show less
N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Leisure_Activities
PX221302100000 I have trouble doing all of my regular more
leisure activities with others. show less
N/A
PX221302_QualityOfLifeForAdults_Trouble_Doing_Usual_Work
PX221302120000 I have trouble doing all of my usual work more
(include work at home) show less
N/A
PX221302_QualityOfLifeForAdults_Trouble_Starting_Things_Past7days
PX221302060200 During the past 7 days, I have trouble more
starting things because I am tired show less
N/A
Rare Genetic Conditions
Measure Name

Quality of Life

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.

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

Tozzi, L., et al. (2020) The human connectome project for disordered emotional states: Protocol and rationale for a research domain criteria study of brain connectivity in young adult anxiety and depression. NeuroImage. 2020 July; 214: 116715. doi: 10.1016/j.neuroimage.2020.116715

Shane, M. S. and L. L. Groat (2018) Capacity for upregulation of emotional processing in psychopathy: all you have to do is ask. Social Cognitive and Affective Neuroscience. 2018 November; 13(11): 1163-1176. doi: 10.1093/scan/nsy088

Hser, Y.-I., et al. (2017) Reductions in cannabis use are associated with improvements in anxiety, depression, and sleep quality, but not quality of life. J Subst Abuse Treat. 2017 October; 81: 53-58. doi: 10.1016/j.jsat.2017.07.012