Protocol - Quality of Life - Adult

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-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

Standard	Name	ID	Source
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 ID	Variable Description	dbGaP 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

Langdon, K. J., et al. (2023) Integrating long-acting injectable treatment to improve medication adherence among persons living with HIV and opioid use disorder: study protocol Addiction Science & Clinical Practice. 2023 October; 18(1): 60. doi: 10.1186/s13722-023-00418-6

Hill, R., et al. (2023) More Borders to Cross: The Financial and Psychological Impact of Immigrant Discrimination during COVID-19 Social Work Research. 2023 September; 47(4): 275-286.

Vo, H. T., et al. (2023) Psychometric properties of the Treatment Effectiveness Assessment in methamphetamine use disorder Journal of Substance Use and Addiction Treatment. 2023 August; 151: 209085. doi: 10.1016/j.josat.2023.209085

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