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 Anthony 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

Research output: Contribution to journalArticle

11 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)S1-S12
JournalArchives of physical medicine and rehabilitation
Volume100
Issue number4
DOIs
StatePublished - Apr 1 2019

Fingerprint

Veterans
Caregivers
Quality of Life
Information Systems
Emotions
Traumatic Brain Injury
Statistical Factor Analysis
Focus Groups
Reading
Rehabilitation
Anxiety

Keywords

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

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

Cite this

Carlozzi, Noelle E. ; Kallen, Michael Anthony ; Hanks, Robin ; Hahn, Elizabeth A ; Brickell, Tracey A. ; Lange, Rael T. ; French, Louis M. ; Kratz, Anna L. ; Tulsky, David S. ; Cella, David ; Miner, Jennifer A. ; Ianni, Phillip A. ; Sander, Angelle M. / 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. In: Archives of physical medicine and rehabilitation. 2019 ; Vol. 100, No. 4. pp. S1-S12.
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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.",
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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 Anthony; Hanks, Robin; Hahn, Elizabeth A; Brickell, Tracey A.; Lange, Rael T.; French, Louis M.; Kratz, Anna L.; Tulsky, David S.; Cella, David; Miner, Jennifer A.; Ianni, Phillip A.; Sander, Angelle M.

In: Archives of physical medicine and rehabilitation, Vol. 100, No. 4, 01.04.2019, p. S1-S12.

Research output: Contribution to journalArticle

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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 Anthony

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.

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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.

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KW - Health care

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