Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System

Noelle E. Carlozzi; Rael T. Lange; Louis M. French; Angelle M. Sander; Phillip A. Ianni; David S. Tulsky; Jennifer A. Miner; Michael A. Kallen; Tracey A. Brickell

doi:10.1016/j.apmr.2018.05.034

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System

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

^*Corresponding author for this work

Medical Social Sciences

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

13 Scopus citations

Abstract

Objectives: To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. Design: Computer-based surveys delivered through an on-line data capture platform. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. Intervention: Not Applicable. Main Outcome Measures: Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. Results: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from.75 to.90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. Conclusions: Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

Original language	English (US)
Pages (from-to)	S85-S93
Journal	Archives of physical medicine and rehabilitation
Volume	100
Issue number	4
DOIs	https://doi.org/10.1016/j.apmr.2018.05.034
State	Published - Apr 2019

Funding

Supported by the National Institutes of Health (NIH), National Institute of Nursing Research (R01NR013658), the National Center for Advancing Translational Sciences (UL1TR000433), and the Defense and Veterans Brain Injury Center (DVBIC). We thank the investigators, coordinators, and research associates/assistants who worked on this study, the study participants, 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 (NIH), National Institute of Nursing Research ( R01NR013658 ), the National Center for Advancing Translational Sciences ( UL1TR000433 ), and the Defense and Veterans Brain Injury Center (DVBIC). We thank the investigators, coordinators, and research associates/assistants who worked on this study, the study participants, 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.

Keywords

Brain injury
Health-related quality of life
Military family
Patient reported outcome
Rehabilitation
Traumatic brain injury
Veterans

ASJC Scopus subject areas

Physical Therapy, Sports Therapy and Rehabilitation
Rehabilitation

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10.1016/j.apmr.2018.05.034

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Carlozzi, N. E., Lange, R. T., French, L. M., Sander, A. M., Ianni, P. A., Tulsky, D. S., Miner, J. A., Kallen, M. A., & Brickell, T. A. (2019). Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System. Archives of physical medicine and rehabilitation, 100(4), S85-S93. https://doi.org/10.1016/j.apmr.2018.05.034

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title = "Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System",

abstract = "Objectives: To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. Design: Computer-based surveys delivered through an on-line data capture platform. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. Intervention: Not Applicable. Main Outcome Measures: Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. Results: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from.75 to.90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. Conclusions: Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.",

keywords = "Brain injury, Health-related quality of life, Military family, Patient reported outcome, Rehabilitation, Traumatic brain injury, Veterans",

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

note = "Publisher Copyright: {\textcopyright} 2018 American Congress of Rehabilitation Medicine",

year = "2019",

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doi = "10.1016/j.apmr.2018.05.034",

language = "English (US)",

volume = "100",

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Carlozzi, NE, Lange, RT, French, LM, Sander, AM, Ianni, PA, Tulsky, DS, Miner, JA, Kallen, MA & Brickell, TA 2019, 'Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System', Archives of physical medicine and rehabilitation, vol. 100, no. 4, pp. S85-S93. https://doi.org/10.1016/j.apmr.2018.05.034

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System. / Carlozzi, Noelle E.; Lange, Rael T.; French, Louis M. et al.
In: Archives of physical medicine and rehabilitation, Vol. 100, No. 4, 04.2019, p. S85-S93.

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 - Reliability and Validity Data for the TBI-CareQOL Measurement System

AU - Carlozzi, Noelle E.

AU - Lange, Rael T.

AU - French, Louis M.

AU - Sander, Angelle M.

AU - Ianni, Phillip A.

AU - Tulsky, David S.

AU - Miner, Jennifer A.

AU - Kallen, Michael A.

AU - Brickell, Tracey A.

PY - 2019/4

Y1 - 2019/4

N2 - Objectives: To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. Design: Computer-based surveys delivered through an on-line data capture platform. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. Intervention: Not Applicable. Main Outcome Measures: Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. Results: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from.75 to.90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. Conclusions: Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

AB - Objectives: To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. Design: Computer-based surveys delivered through an on-line data capture platform. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. Intervention: Not Applicable. Main Outcome Measures: Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. Results: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from.75 to.90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. Conclusions: Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

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KW - Health-related quality of life

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KW - Patient reported outcome

KW - Rehabilitation

KW - Traumatic brain injury

KW - Veterans

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Carlozzi NE, Lange RT, French LM, Sander AM, Ianni PA, Tulsky DS et al. Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System. Archives of physical medicine and rehabilitation. 2019 Apr;100(4):S85-S93. doi: 10.1016/j.apmr.2018.05.034

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System

Abstract

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