The Development of Two New Computer Adaptive Tests To Evaluate Feelings of Loss in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feelings of Loss-Self and Feelings of Loss-Person With Traumatic Brain Injury

Noelle E. Carlozzi*, Michael A. Kallen, Phillip A. Ianni, Angelle M. Sander, Elizabeth A. Hahn, Rael T. Lange, Tracey A. Brickell, Louis M. French, Jennifer A. Miner, Robin Hanks

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

12 Scopus citations

Abstract

Objective: To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design: Cross-sectional survey study. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions: Not applicable. Main Outcome Measures: Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results: While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r=.87 for Feelings of Loss-Self and r=.85 for Feelings of Loss-Person with TBI). Conclusions: The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI.

Original languageEnglish (US)
Pages (from-to)S31-S42
JournalArchives of physical medicine and rehabilitation
Volume100
Issue number4
DOIs
StatePublished - 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. 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). Disclosures: Noelle E. Carlozzi, Michael A. Kallen, Phillip A. Ianni, Angelle M. Sander, Elizabeth A. Hahn, Jennifer A. Miner, and Robin Hanks report grants from National Institutes of Health during the study period. The other authors have nothing to disclose. 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

  • Caregiver
  • Health-related quality of life
  • Patient reported outcome
  • Psychometrics
  • Rehabilitation
  • Traumatic brain injury
  • Veterans

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

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