The reliability and validity of the TBI‑CareQOL system in four diverse caregiver groups

Journal of Patient-Reported Outcomes, 2023 · DOI: https://doi.org/10.1186/s41687-023-00602-x · Published: January 4, 2023

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Simple Explanation

As the complexities of disease management and care needs grow, so does the need for informal caregivers. Provid-ing care for a family member or friend with a significant health condition can have a deleterious impact on caregiver health-related quality of life (HRQOL), as well as the HRQOL of the care recipient. Reliable and valid measures of HRQOL can help us to better understand the treatment needs of these caregiver populations. The TBI-CareQOL measurement system was developed to capture important HRQOL concepts specific to caregivers of people with traumatic brain injury.

Study Duration

6 Months or 3 Months

Participants

139 TBI caregivers, 19 SCI caregivers, 21 HD caregivers, and 30 HCT caregivers

Evidence Level

Not specified

Key Findings

1
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.
2
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.
3
Findings indicate that the TBI-CareQOL measures have clinical utility in caregivers of people with TBI, as well as in other caregiver groups.

Research Summary

This report provides data to support the reliability and validity of scores on several HRQOL measures from the TBI-CareQOL measurement system (which was developed specifically for use in caregivers of people with TBI) in an independent sample of caregivers of people with TBI, as well as in three new caregiver populations Measurement validation is an ongoing process, and data are needed across multiple studies and multiple samples over time. These data provide the beginning of what will hopefully eventually become a large body of evidence to support the clinical utility of these measures across diverse caregiver populations.

Practical Implications

Clinical Trials

The TBI-CareQOL measures should be considered as important outcome measures for clinical trials aiming to improve caregiver outcomes.

Broader Application

These data would also suggest that these measures might also be extended for use in other caregiver cohorts with similar etiology/presentation (e.g., caregivers of people with Alzheimer’s disease, stroke, Parkinson’s disease, multiple sclerosis, or other cancer conditions) and used more broadly in the caregiver literature.

Understanding Measurement Properties

An understanding of measurement properties, and of the strengths and weaknesses of a particular measure in a particular population, is critical to proper score interpretation.

Study Limitations

1
Secondary use of data from a randomized control trial not designed specifically for psychometric properties.
2
Small sample sizes of the SCI, HD, and HCT caregiver cohorts precluded examination of known groups validity or responsiveness to change.
3
Lack of racial or ethnic diversity in the HD group limits generalizability.

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