Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Noelle E. Carlozzi; Phillip A. Ianni; David S. Tulsky; Tracey A. Brickell; Rael T. Lange; Louis M. French; David Cella; Michael A. Kallen; Jennifer A. Miner; Anna L. Kratz

doi:10.1016/j.apmr.2018.05.020

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Noelle E. Carlozzi^*, Phillip A. Ianni, David S. Tulsky, Tracey A. Brickell, Rael T. Lange, Louis M. French, David Cella, Michael A. Kallen, Jennifer A. Miner, Anna L. Kratz

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

17 Scopus citations

Abstract

Objective: To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design: Cross-sectional survey data collected through an online data capture platform. Setting: A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants: Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention: Not applicable. Main Outcome Measures: PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results: For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.

Original language	English (US)
Pages (from-to)	S102-S109
Journal	Archives of physical medicine and rehabilitation
Volume	100
Issue number	4
DOIs	https://doi.org/10.1016/j.apmr.2018.05.020
State	Published - Apr 2019

Keywords

Caregiver
Fatigue
Patient reported outcome measures
Psychometrics
Rehabilitation
Sleep
Traumatic brain injury

ASJC Scopus subject areas

Rehabilitation
Physical Therapy, Sports Therapy and Rehabilitation

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Carlozzi, N. E., Ianni, P. A., Tulsky, D. S., Brickell, T. A., Lange, R. T., French, L. M., Cella, D., Kallen, M. A., Miner, J. A., & Kratz, A. L. (2019). Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks. Archives of physical medicine and rehabilitation, 100(4), S102-S109. https://doi.org/10.1016/j.apmr.2018.05.020

Carlozzi, Noelle E. ; Ianni, Phillip A. ; Tulsky, David S. et al. / Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury : Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks. In: Archives of physical medicine and rehabilitation. 2019 ; Vol. 100, No. 4. pp. S102-S109.

@article{ef2b01ab1d5d4077b97598232d5be2c9,

title = "Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks",

abstract = "Objective: To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design: Cross-sectional survey data collected through an online data capture platform. Setting: A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants: Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention: Not applicable. Main Outcome Measures: PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results: For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.",

keywords = "Caregiver, Fatigue, Patient reported outcome measures, Psychometrics, Rehabilitation, Sleep, Traumatic brain injury",

author = "Carlozzi, {Noelle E.} and Ianni, {Phillip A.} and Tulsky, {David S.} and Brickell, {Tracey A.} and Lange, {Rael T.} and French, {Louis M.} and David Cella and Kallen, {Michael A.} and Miner, {Jennifer A.} and Kratz, {Anna L.}",

note = "Funding Information: We thank the investigators, coordinators, and research associates/assistants who worked on this study and organizations who supported recruitment efforts. The University of Michigan Research Team would also like to thank the Hearts of Valor and the Brain Injury Association of Michigan for assistance with community outreach for recruitment efforts at this site. TBI-CareQOL site investigators and coordinators: Noelle Carlozzi, Anna Kratz, Amy Austin, Mitchell Belanger, Micah Warschausky, Siera Goodnight, Jennifer Miner (University of Michigan, Ann, Arbor, MI); Angelle Sander (Baylor College of Medicine and TIRR Memorial Hermann, Houston, TX), Curtisa Light (TIRR Memorial Hermann, Houston, TX); Robin Hanks, Daniela Ristova-Trendov (Wayne State University/Rehabilitation Institute of Michigan, Detroit, MI); Nancy Chiaravalloti, Dennis Tirri, Belinda Washington (Kessler Foundation, West Orange, NJ); Tracey Brickell, Rael Lange, Louis French, Rachel Gartner, Megan Wright, Angela Driscoll, Diana Nora, Jamie Sullivan, Nicole Varbedian, Johanna Smith, Lauren Johnson, Heidi Mahatan, Mikelle Mooney, Mallory Frazier, Zoe Li, and Deanna Pruitt (Walter Reed National Military Medical Center/Defense and Veterans Brain Injury Center, Bethesda, MD). Supported by the National Institutes of Health—National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center. Funding Information: Supported by the National Institutes of Health—National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center. Publisher Copyright: {\textcopyright} 2018 American Congress of Rehabilitation Medicine",

year = "2019",

month = apr,

doi = "10.1016/j.apmr.2018.05.020",

language = "English (US)",

volume = "100",

pages = "S102--S109",

journal = "Archives of Physical Medicine and Rehabilitation",

issn = "0003-9993",

publisher = "W.B. Saunders Ltd",

number = "4",

}

Carlozzi, NE, Ianni, PA, Tulsky, DS, Brickell, TA, Lange, RT, French, LM, Cella, D , Kallen, MA, Miner, JA & Kratz, AL 2019, 'Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks', Archives of physical medicine and rehabilitation, vol. 100, no. 4, pp. S102-S109. https://doi.org/10.1016/j.apmr.2018.05.020

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks. / Carlozzi, Noelle E.; Ianni, Phillip A.; Tulsky, David S. et al.
In: Archives of physical medicine and rehabilitation, Vol. 100, No. 4, 04.2019, p. S102-S109.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

T2 - Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

AU - Carlozzi, Noelle E.

AU - Ianni, Phillip A.

AU - Tulsky, David S.

AU - Brickell, Tracey A.

AU - Lange, Rael T.

AU - French, Louis M.

AU - Cella, David

AU - Kallen, Michael A.

AU - Miner, Jennifer A.

AU - Kratz, Anna L.

N1 - Funding Information: We thank the investigators, coordinators, and research associates/assistants who worked on this study and organizations who supported recruitment efforts. The University of Michigan Research Team would also like to thank the Hearts of Valor and the Brain Injury Association of Michigan for assistance with community outreach for recruitment efforts at this site. TBI-CareQOL site investigators and coordinators: Noelle Carlozzi, Anna Kratz, Amy Austin, Mitchell Belanger, Micah Warschausky, Siera Goodnight, Jennifer Miner (University of Michigan, Ann, Arbor, MI); Angelle Sander (Baylor College of Medicine and TIRR Memorial Hermann, Houston, TX), Curtisa Light (TIRR Memorial Hermann, Houston, TX); Robin Hanks, Daniela Ristova-Trendov (Wayne State University/Rehabilitation Institute of Michigan, Detroit, MI); Nancy Chiaravalloti, Dennis Tirri, Belinda Washington (Kessler Foundation, West Orange, NJ); Tracey Brickell, Rael Lange, Louis French, Rachel Gartner, Megan Wright, Angela Driscoll, Diana Nora, Jamie Sullivan, Nicole Varbedian, Johanna Smith, Lauren Johnson, Heidi Mahatan, Mikelle Mooney, Mallory Frazier, Zoe Li, and Deanna Pruitt (Walter Reed National Military Medical Center/Defense and Veterans Brain Injury Center, Bethesda, MD). Supported by the National Institutes of Health—National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center. Funding Information: Supported by the National Institutes of Health—National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center. Publisher Copyright: © 2018 American Congress of Rehabilitation Medicine

PY - 2019/4

Y1 - 2019/4

N2 - Objective: To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design: Cross-sectional survey data collected through an online data capture platform. Setting: A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants: Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention: Not applicable. Main Outcome Measures: PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results: For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.

AB - Objective: To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design: Cross-sectional survey data collected through an online data capture platform. Setting: A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants: Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention: Not applicable. Main Outcome Measures: PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results: For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.

KW - Caregiver

KW - Fatigue

KW - Patient reported outcome measures

KW - Psychometrics

KW - Rehabilitation

KW - Sleep

KW - Traumatic brain injury

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DO - 10.1016/j.apmr.2018.05.020

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Carlozzi NE, Ianni PA, Tulsky DS, Brickell TA, Lange RT, French LM et al. Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks. Archives of physical medicine and rehabilitation. 2019 Apr;100(4):S102-S109. doi: 10.1016/j.apmr.2018.05.020

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Abstract

Keywords

ASJC Scopus subject areas

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