The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

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

doi:10.1016/j.apmr.2018.08.175

The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

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

^*Corresponding author for this work

Medical Social Sciences

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

44 Scopus citations

Abstract

Objective: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design: New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions: Not applicable. Main Outcome Measures: The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results: Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions: The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI.

Original language	English (US)
Pages (from-to)	S1-S12
Journal	Archives of physical medicine and rehabilitation
Volume	100
Issue number	4
DOIs	https://doi.org/10.1016/j.apmr.2018.08.175
State	Published - Apr 2019

Funding

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. 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. 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 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. 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 .

Keywords

Caregivers
Health care
Military personnel
Quality of life
Rehabilitation
Traumatic brain injuries
Veterans

ASJC Scopus subject areas

Rehabilitation
Physical Therapy, Sports Therapy and Rehabilitation

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10.1016/j.apmr.2018.08.175

Cite this

Carlozzi, N. E., Kallen, M. A., Hanks, R., Hahn, E. A., Brickell, T. A., Lange, R. T., French, L. M., Kratz, A. L., Tulsky, D. S., Cella, D., Miner, J. A., Ianni, P. A., & Sander, A. M. (2019). The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury. Archives of physical medicine and rehabilitation, 100(4), S1-S12. https://doi.org/10.1016/j.apmr.2018.08.175

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title = "The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury",

abstract = "Objective: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design: New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions: Not applicable. Main Outcome Measures: The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results: Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions: The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI.",

keywords = "Caregivers, Health care, Military personnel, Quality of life, Rehabilitation, Traumatic brain injuries, Veterans",

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

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

year = "2019",

month = apr,

doi = "10.1016/j.apmr.2018.08.175",

language = "English (US)",

volume = "100",

pages = "S1--S12",

journal = "Archives of physical medicine and rehabilitation",

issn = "0003-9993",

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Carlozzi, NE, Kallen, MA, Hanks, R, Hahn, EA, Brickell, TA, Lange, RT, French, LM, Kratz, AL, Tulsky, DS, Cella, D, Miner, JA, Ianni, PA & Sander, AM 2019, 'The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury', Archives of physical medicine and rehabilitation, vol. 100, no. 4, pp. S1-S12. https://doi.org/10.1016/j.apmr.2018.08.175

The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury. / Carlozzi, Noelle E.; Kallen, Michael A.; Hanks, Robin et al.
In: Archives of physical medicine and rehabilitation, Vol. 100, No. 4, 04.2019, p. S1-S12.

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

TY - JOUR

T1 - The TBI-CareQOL Measurement System

T2 - Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

AU - Carlozzi, Noelle E.

AU - Kallen, Michael A.

AU - Hanks, Robin

AU - Hahn, Elizabeth A.

AU - Brickell, Tracey A.

AU - Lange, Rael T.

AU - French, Louis M.

AU - Kratz, Anna L.

AU - Tulsky, David S.

AU - Cella, David

AU - Miner, Jennifer A.

AU - Ianni, Phillip A.

AU - Sander, Angelle M.

PY - 2019/4

Y1 - 2019/4

N2 - Objective: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design: New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions: Not applicable. Main Outcome Measures: The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results: Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions: The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI.

AB - Objective: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design: New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions: Not applicable. Main Outcome Measures: The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results: Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions: The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI.

KW - Caregivers

KW - Health care

KW - Military personnel

KW - Quality of life

KW - Rehabilitation

KW - Traumatic brain injuries

KW - Veterans

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Carlozzi NE, Kallen MA, Hanks R, Hahn EA, Brickell TA, Lange RT et al. The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury. Archives of physical medicine and rehabilitation. 2019 Apr;100(4):S1-S12. doi: 10.1016/j.apmr.2018.08.175

The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

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