Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Carlozzi, Noelle E.; Ianni, Phillip A.; Tulsky, David S.; Brickell, Tracey A.; Lange, Rael T.; French, Louis M.; Cella, David; Kallen, Michael A.; Miner, Jennifer A.; Kratz, Anna L.

doi:10.1016/j.apmr.2018.05.020

Cited by 25 publications

(14 citation statements)

References 98 publications

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“…These findings, in conjunction with previously published findings for other measures within the TBI-CareQOL measurement system (Carlozzi, Hanks, et al, 2019; Carlozzi, Ianni, Lange, et al, 2019; Carlozzi, Ianni, Tulsky, et al, 2019; Carlozzi, Kallen, Brickell, et al, 2019; Carlozzi, Kallen, Hanks, Hanks, et al, 2019; Carlozzi, Kallen, Hanks, Kratz, et al, 2019; Carlozzi, Lange, Boileau, et al, 2019; Carlozzi, Lange, French, et al, 2019; Carlozzi, Lange, Kallen, et al, 2019a, 2019b) provide strong support for the clinical utility of this system’s measures. As such, clinicians and researchers should feel comfortable selecting appropriate TBI-CareQOL measures for use as meaningful endpoints in trials focused on improving outcomes in persons with TBI and their informal family caregivers.…”

Section: Discussionsupporting

confidence: 80%

“…Higher scores indicate more positive perceptions of the caregiver role. Furthermore, we administered measures from the TBI-CareQOL that have been validated in previous studies for use in our current study to support convergent and discriminant validity of the measures mentioned above, including: PROMIS Anxiety, Fatigue, Social Isolation, and Ability to Participate in Social Roles and Activities (Carlozzi, Hanks, et al, 2019; Carlozzi, Ianni, Lange, et al, 2019; Carlozzi, Ianni, Tulsky, et al, 2019). These measures are on a T score metric; again, higher scores indicate more of the named construct.…”

Section: Methodsmentioning

confidence: 99%

“…Previous publications from the first phase of data collection have highlighted preliminary reliability and validity data for both the SF and simulated CATs (i.e., CATs that were simulated using full item bank administration data) for these new measures using the data collected in the initial calibration sample of caregivers of civilians and SMVs with TBI (Carlozzi, Kallen, Hanks, Hanks, et al, 2019; Carlozzi, Kallen, Hanks, Kratz, et al, 2019; Carlozzi, Kallen, Ianni, Hahn, et al, 2019; Carlozzi, Kallen, Ianni, Hahn, Sander, et al, 2019; Carlozzi, Kallen, Sander, et al, 2019; Carlozzi, Lange, French, et al, 2019). Those previous publications also highlighted the reliability and validity data for several generic measures of HRQOL within the TBI-CareQOL Measurement System; this included measures of mental HRQOL (Patient-Reported Outcomes Measurement Information System [PROMIS] Anger, Anxiety, and Depression; Carlozzi, Hanks, et al, 2019), physical HRQOL (PROMIS Sleep Disturbance and Fatigue; Carlozzi, Ianni, Tulsky, et al, 2019), and social HRQOL (PROMIS Ability to Participate in Social Roles and Activities, Satisfaction with Social Roles and Activities, Social Support, Emotional Support, and Social Isolation; Carlozzi, Ianni, Lange, et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

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Reliability and validity data to support the clinical utility of the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL).

Carlozzi¹,

Boileau²,

Kallen³

et al. 2020

Rehabilitation Psychology

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Objective: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) is a patient-reported outcome measurement system that is specific to caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI). This measurement system includes 26 item banks that represent both generic (i.e., borrowed from existing measurement systems) and caregiver-specific components of health-related quality of life (HRQOL). This report provides reliability and validity data for measures within the TBI-CareQOL that have not previously been reported (i.e., 4 caregiver-specific and 7 generic measures of HRQOL). Design: Three hundred eighty-five caregivers of persons with TBI completed caregiver-specific computer adaptive tests (CATs) for Feelings of Loss-Self, Caregiver Strain, Caregiver-Specific Anxiety, and Feeling Trapped, as well as generic measures of HRQOL from complementary measurement systems (i.e., Neuro-QoL Positive Affect and Well-Being; PROMIS Sleep-Related Impairment; NIH Toolbox Perceived Stress, General Life Satisfaction, and Self Efficacy; TBI-QOL Resilience and Grief/Loss). Caregivers also completed several additional measures to establish convergent and discriminant validity, as well as the Mayo Portland Adaptability Index, 4th ed. Results: Findings support the internal consistency reliability (all alphas >.85) and test-retest stability (all alphas >.73) of the TBI-CareQOL measures. Convergent validity was supported by moderate to high correlations between the TBI-CareQOL measures and related measures, whereas discriminant validity was supported by low correlations between the TBI-CareQOL measures and unrelated constructs. Known-groups validity was also supported. Conclusions: Findings support the reliability and validity of the item banks that comprise the TBI-CareQOL Measurement System. These measures should be considered for any standardized assessment of HRQOL in caregivers of civilians and SMVs with TBI.

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Section: Discussionsupporting

confidence: 80%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Reliability and validity data to support the clinical utility of the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL).

Carlozzi¹,

Boileau²,

Kallen³

et al. 2020

Rehabilitation Psychology

Self Cite

View full text Add to dashboard Cite

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“…This report is complemented by several companion articles that provide a more in-depth examination of each of the domains highlighted in this paper. [39][40][41][42][43][44][45][46]…”

mentioning

confidence: 99%

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

Kallen

Hanks

et al. 2019

Archives of Physical Medicine and Rehabilitation

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“…The main outcome measures were sleep disturbance scores (SDS) and sleep-related impairment scores (SIS), which were measured using the Short-Form Patient-Reported Outcomes Information System (PROMIS) ( Yu et al, 2012 ), which has been used in previous studies ( Carlozzi et al, 2019 ; Hanish & Han, 2018 ). The SDS is comprised of four items that assess self-reported sleep quality, difficulties falling asleep, sleep problems, and whether sleep was refreshing within the past 7 days.…”

Section: Methodsmentioning

confidence: 99%

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

Greaney

Kunicki

Drohan

et al. 2022

Gerontology and Geriatric Medicine

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Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers ( n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.

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Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Abstract: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.

Cited by 25 publications

References 98 publications

Reliability and validity data to support the clinical utility of the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL).

Reliability and validity data to support the clinical utility of the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL).

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

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

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