Faculty Bibliography

PURPOSE/OBJECTIVE:Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores cannot be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item response theory (IRT) to develop a transitional scoring link (or "crosswalk") between the PROMIS adult and pediatric physical health measures. SETTING/METHODS:Sample 1 was collected at 6 rehabilitation hospitals in the U.S., and participants in Sample 2 were recruited from public health insurance programs and an online research panel. METHODS:PROMIS pediatric and adult physical function, mobility, upper extremity, fatigue, and pain measures were administered to a sample of 874 individuals aged 14-20 years old with special health needs and a sample of 641 individuals aged 14-25 years with a disability. IRT-based scores were linked using a linear approximation to calibrated projection. RESULTS:Estimated latent variable correlations ranged between 0.84 and 0.95 for the PROMIS pediatric and adult scores. Root Expected Mean Square Difference values were below the 0.08 threshold in all cases except when comparing genders on the Mobility (0.097) and Pain (0.10) scales in the special health care needs sample. Sum score conversion tables for the pediatric and adult PROMIS measures are presented. CONCLUSIONS:The linking coefficients can be used to calculate scale scores on PROMIS adult measures from pediatric measure scores and vice versa. This may lead to more accurate measurement in cross-sectional studies spanning multiple age groups or longitudinal studies that require comparable measurement across distinct developmental stages.

OBJECTIVE:To assess differential item functioning and observed mean differences across two modes of administration for PROMIS® measure scores in a sample of adults with traumatic injury. METHOD/METHODS:Items from 7 PROMIS® adult measures (v1.0 Physical Function, Fatigue, Pain Interference, Anger, Anxiety, and Depression and v2.0 Social Health-Emotional Support) were administered as fixed-length short forms in random order to a cross-sectional sample. Participants were randomly assigned to interviewer-administered (phone or in-person) or self-administered (via the Assessment Center website) conditions. The research was conducted at 5 medical rehabilitation institutions across the U.S. Participants included 277 adults with spinal cord injury (n = 148) or traumatic brain injury (n = 129). RESULTS:DIF analyses indicated that all items were invariant to mode of administration. There was no significant effect of mode of administration for the majority of PROMIS® measures tested. Regarding observed scores, there were small but significant effects of mode of administration on the Emotional Support and Depression measures, with participants in the interview condition reporting better support/fewer symptoms. CONCLUSIONS:PROMIS® instruments demonstrated measurement equivalence across interviewer-administered and self-administered conditions. These findings are particularly important for research or clinical applications where administration of PROMIS® measures by independent web- or tablet-based administration is not ideal, for example with individuals with physical or cognitive disabilities or with individuals who lack computer and/or Internet access. PROMIS® v1.0 Depression and PROMIS® v2.0 Emotional Support scores displayed a tendency toward social desirability that should be considered when these measures are interviewer-administered. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

OBJECTIVE:To examine the reliability and validity of the short form (SF) and computer adaptive test (CAT) versions of the Patient Reported Outcomes Measurement Information System (PROMIS) measures of social health of caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI). DESIGN/METHODS:Self-report questionnaires administered through an on-line data collection platform. SETTING/METHODS:Hospital and community-based outreach at three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility PARTICIPANTS: 560 (344 civilians and 216 military) caregivers of individuals with a documented TBI INTERVENTION: N/A MAIN OUTCOME MEASURES: 5 PROMIS Social Health Measures RESULTS: All five PROMIS social health measures exceeded the a priori criterion for internal consistency reliability (≥ 0.70); most PROMIS measures met the criterion for test-retest reliability (≥ 0.70) in the civilian sample; in the SMV sample, test-retest reliability was generally below this criterion, except for Social Isolation. For both samples, convergent validity was supported by moderate correlations between the 5 PROMIS social health measures and related measures, and discriminant validity was supported by low correlations between PROMIS social health measures and measures of dissimilar constructs. Most PROMIS scores indicated significantly worse social health in both samples of those caring for individuals who were low functioning. Finally, impairment rates in social health were elevated for those caring for low functioning individuals, especially in the SMV sample. CONCLUSIONS:The PROMIS computer adaptive test and short form social health measures have potential clinical utility for use in caregivers of civilians and SMVs with TBI.

OBJECTIVE:To develop a new measurement system, the 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/METHODS: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. caregivers of high-functioning persons with TBI for each of the new measures, as well as for 10 existing PROMIS measures. SETTING/METHODS:Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS/METHODS:560 caregivers of civilians (n = 344) or service members/veterans with TBI (n = 216). INTERVENTIONS/METHODS:Not applicable. MAIN OUTCOME MEASURES/METHODS: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 five 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.

OBJECTIVE:To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. DESIGN/METHODS:Cross-sectional survey data collected through an online data capture platform. SETTING/METHODS:A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. PARTICIPANTS/METHODS:Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. INTERVENTION/METHODS:Not applicable. MAIN OUTCOME MEASURES/METHODS:PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). RESULTS:For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. CONCLUSIONS: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.

OBJECTIVES/OBJECTIVE:To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. DESIGN/METHODS:Computer-based surveys delivered through an on-line data capture platform. SETTING/METHODS:Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS/METHODS:Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. INTERVENTION/METHODS:Not Applicable. MAIN OUTCOME MEASURES/METHODS:Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. RESULTS:Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from .75 to .90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. CONCLUSIONS:Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

OBJECTIVE:To investigate the association of the sociocultural variables race/ethnicity, education, and poverty level to caregivers' positive and negative appraisals following traumatic brain injury. DESIGN/METHODS:Survey. SETTING/METHODS:Community. PARTICIPANTS/METHODS:344 caregivers (216 White; 69 Black; 39 Hispanic) of persons with complicated mild to severe TBI at least one-year post-injury. INTERVENTION/METHODS:Not applicable. MAIN OUTCOME MEASURES/METHODS:Modified Caregiver Appraisal Scale (M-CAS); Zarit Burden Interview (ZBI). RESULTS:Black caregivers reported lower levels of perceived burden on both the M-CAS and the ZBI. Black and Hispanic caregivers reported more traditional caregiver ideology (caregiving as a responsibility) than did Whites. Greater poverty was associated with higher burden on the M-CAS, lower caregiver satisfaction, and less mastery. Higher education was associated with higher burden on the ZBI and with lower caregiver mastery. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Treatment professionals should be culturally sensitive to the different perspectives that caregivers may have based on sociocultural factors. Sociocultural factors should be considered in research investigating caregiver outcomes, including appraisals.

OBJECTIVE:To examine group differences among caregivers of service members or veterans (SMVs) and civilians with traumatic brain injury (TBI). DESIGN/METHODS:An observational research study examining the group differences between caregivers of SMVs and civilians with TBI. The data presented was collected as part of a larger study that calibrated and validated the Traumatic Brain Injury-Care Quality of Life (TBI-CareQOL) item banks. SETTING/METHODS:Participants in this multicenter study completed an online survey via a study-specific website. Surveys were completed at the study site, at home, or via phone interview. Civilian caregivers were recruited from 4 rehabilitation hospitals and caregivers of SMVs were recruited through community outreach and collaboration with the Hearts of Valor. PARTICIPANTS/METHODS:Participants (N=473) consisted of 344 caregivers of civilians with TBI and 129 caregivers of SMVs with TBI. INTERVENTIONS/METHODS:Not applicable. MAIN OUTCOME MEASURES/METHODS:Zarit Burden Interview Scale, TBI-CareQOL, and Mayo Portland Adaptability Inventory, 4th revision (MPAI-4). RESULTS:Of the independent variables included in the logistic regression model that classified military-affiliated vs civilian caregivers, 5 were statistically significant: age, spousal status, time since injury, MPAI-4 Adjustment, and TBI-CareQOL Feeling Trapped. CONCLUSIONS:The results indicate that caregivers of SMVs were more likely to report worse emotional and social adjustment among the individuals with TBI and caregivers of SMVs were more likely to report greater levels of feeling trapped by their caregiving duties.

Purpose The purpose of this study was to evaluate the internal consistency and construct validity of the Traumatic Brain Injury Quality of Life Communication Item Bank (TBI-QOL COM) short form as a parent-proxy report measure. The TBI-QOL COM is a patient-reported outcome measure of functional communication originally developed as a self-report measure for adults with traumatic brain injury (TBI), but it may also be valid as a parent-proxy report measure for children who have sustained TBI. Method One hundred twenty-nine parent-proxy raters completed the TBI-QOL COM short form 6 months postinjury as a secondary aim of a multisite study of pediatric TBI outcomes. The respondents' children with TBI were between 8 and 18 years old ( M _age = 13.2 years old) at the time of injury, and the proportion of TBI severity mirrored national trends (73% complicated-mild; 27% moderate or severe). Results The parent-proxy report version of the TBI-QOL COM displayed strong internal consistency (ordinal α = .93). It also displayed evidence of known-groups validity by virtue of more severe injuries associated with more abnormal scores. The instrument also showed evidence of convergent and discriminant validity by displaying a pattern of correlations with other constructs according to their conceptual relatedness to functional communication. Conclusions This preliminary psychometric investigation of the TBI-QOL COM supports the further development of a parent report version of the instrument. Future development of the TBI-QOL COM with this population may include expanding the content of the item bank and developing calibrations specifically for parent-proxy raters. Supplemental Material https://doi.org/10.23641/asha.7616534.