The Reliability and Validity of the TBI-CareQOL System in Four Diverse Caregiver Groups

Authors

Noelle E Carlozzi
Sung Won Choi
Zhenke Wu
Srijan Sen
Jonathan Troost
Angela K Lyden
Jennifer A Miner
Christopher Graves
Angelle M Sander

Publication Date

6-26-2023

Journal

Journal of Patient-Reported Outcomes

DOI

10.1186/s41687-023-00602-x

PMID

37358716

PMCID

PMC10293156

PubMedCentral® Posted Date

6-26-2023

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes

Keywords

Humans, Military Personnel, Veterans, Caregivers, Reproducibility of Results, Quality of Life, Surveys and Questionnaires, Cross-Sectional Studies, Brain Injuries, Traumatic, Quality of life, Informal caregivers, Caregiver burden, Patient-reported outcome, Psychometrics

Abstract

PURPOSE: Establishing the psychometric reliability and validity of new measures is an ongoing process. More work is needed in to confirm the clinical utility of the TBI-CareQOL measurement development system in both an independent cohort of caregivers of traumatic brain injury (TBI), as well as in additional caregiver groups.

METHODS: An independent cohort of caregivers of people with TBI (n = 139), as well as three new diverse caregiver cohorts (n = 19 caregivers of persons with spinal cord injury, n = 21 caregivers for persons with Huntington disease, and n = 30 caregivers for persons with cancer), completed 11 TBI-CareQOL measures (caregiver strain; caregiver-specific anxiety; anxiety; depression; anger; self-efficacy; positive affect and well-being; perceived stress; satisfaction with social roles and activities; fatigue; sleep-related impairment), as well as two additional measures to examine convergent and discriminant validity (PROMIS Global Health; the Caregiver Appraisal Scale).

RESULTS: Findings support the internal consistency reliability (all alphas > 0.70 with the vast majority being > 0.80 across the different cohorts) of the TBI-CareQOL measures. All measures were free of ceiling effects, and the vast majority were also free of floor effects. Convergent validity was supported by moderate to high correlations between the TBI-CareQOL and related measures, while discriminant validity was supported by low correlations between the TBI-CareQOL measures and unrelated constructs.

CONCLUSION: Findings indicate that the TBI-CareQOL measures have clinical utility in caregivers of people with TBI, as well as in other caregiver groups. As such, these measures should be considered as important outcome measures for clinical trials aiming to improve caregiver outcomes.