Suchergebnisse

OBJECTIVE: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect. SETTING: Community. PARTICIPANTS: One hundred sixty-five caregivers of service members/veterans with TBI. DESIGN: Retrospective database analysis. MAIN MEASURES: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience). RESULTS: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect. CONCLUSIONS: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.

OBJECTIVE: To identify barriers and supports that caregivers of individuals with military-related traumatic brain injury (TBI) encounter when navigating the military healthcare system; this information will be used as the foundation of a new patient-reported outcome measure. SETTING: Community. PARTICIPANTS: Forty-five caregivers of service members and veterans (SMV) who sustained a medically documented mild, moderate, severe, or penetrating TBI. DESIGN: Latent content analysis. MAIN MEASURES: Nine focus group discussions of barriers and supports to navigating the military healthcare system and community resources. RESULTS: Latent content analysis indicated that caregivers discussed barriers (66%) and supports (34%) to obtaining care within the military healthcare system and the community. Caregivers most frequently discussed SMVs' interactions with healthcare, their own interactions with healthcare, family care, and community organizations. CONCLUSIONS: Caregivers confront numerous challenges while pursuing healthcare services. Although much of the discussion focused on barriers and perceived unmet needs within the military healthcare system, caregivers also recognized supports within the military healthcare system and general community. Increased attention to accessibility and quality of services, as well as reducing financial burden, can lead to improved health-related quality of life for caregivers and their SMVs.

OBJECTIVE: To examine group differences among caregivers of service members/veterans (SMVs) and civilians with traumatic brain injury (TBI). DESIGN: 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 TBI-CareQOL item banks. SETTING: 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 four rehabilitation hospitals and caregivers of SMVs were recruited through community outreach and collaboration with the Hearts of Valor. PARTICIPANTS: Participants consisted of 344 caregivers of civilians with TBI and 129 caregivers of SMVs with TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Zarit Burden Interview Scale, TBI-CareQOL, and Mayo Portland Adaptability Inventory, 4(th) revision (MPAI-4) RESULTS: Of the independent variables included in the logistic regression model that classified military-affiliated versus civilian caregivers five 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.

OBJECTIVE: To provide important reliability and validity data to support the use of the PROMIS Mental Health measures in caregivers of civilians or service members/veterans with traumatic brain injury (TBI). DESIGN: Patient-reported outcomes surveys administered through an electronic data collection platform. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: 560 caregivers of individuals with a documented TBI (344 civilians and 216 military) INTERVENTION: Not Applicable MAIN OUTCOME MEASURES: PROMIS Anxiety, Depression, and Anger Item Banks RESULTS: Internal consistency for all of the PROMIS Mental Health item banks was very good (all α > .86) and three-week test retest reliability was good to adequate (ranged from .65 to .85). Convergent validity and discriminant validity of the PROMIS measures was also supported. Caregivers of individuals that were low functioning had worse emotional HRQOL (as measured by the three PROMIS measures) than caregivers of high functioning individuals, supporting known groups validity. Finally, levels of distress, as measured by the PROMIS measures, were elevated for those caring for low-functioning individuals in both samples (rates ranged from 26.2% to 43.6% for caregivers of low-functioning individuals). CONCLUSIONS: Results support the reliability and validity of the PROMIS Anxiety, Depression, and Anger item banks in caregivers of civilians and service members/veterans with TBI. Ultimately, these measures can be used to provide a standardized assessment of HRQOL as it relates to mental health in these caregivers.

OBJECTIVE: To design a new measure of caregiver-specific anxiety for use in caregivers of individuals with TBI, the TBI-CareQOL Caregiver Specific-Anxiety item bank. DESIGN: Cross-sectional survey study. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: 344 caregivers of civilians with TBI and 216 caregivers of service members/veterans with TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: TBI-CareQOL Caregiver-Specific Anxiety Item Bank RESULTS: The retention of 40 caregiver-specific anxiety items was supported by exploratory and confirmatory factor analyses. Graded response model (GRM) and differential item functioning analyses supported the retention of 33 items in the final measure. Expert review and GRM calibration data was used to select a 6-item static short form, and GRM calibration data was used to program the TBI-CareQOL Caregiver-Specific Anxiety computer adaptive test (CAT). CONCLUSIONS: Established, rigorous measurement development standards were used to develop the new TBI-CareQOL Caregiver-Specific Anxiety CAT and corresponding 6-item short form. This measure is the first patient-reported outcome measure (PRO) designed to assess caregiver-specific anxiety in caregivers of individuals with TBI. The measure exhibits strong psychometric properties.

OBJECTIVE: To develop a new measure of caregiver strain for use in caregivers of individuals with TBI, TBI-CareQOL Caregiver Strain. DESIGN: Qualitative data, literature reviews, and cross-sectional survey study. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Five-hundred-sixty caregivers of civilians (n=344) or service members/veterans (SMVs) with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: TBI-CareQOL Caregiver Strain Item Bank RESULTS: Exploratory and confirmatory factor analyses, a graded response model (GRM) and differential item functioning supported the retention of 33 items in the final measure. GRM calibration data was used to inform the selection of a 6-item static short form, and to program the TBI-CareQOL Caregiver Strain computer-adaptive test (CAT). CAT simulation analyses indicated a 0.97 correlation between the CAT scores and the full item-bank. Three-week test-retest reliability was strong (r = 0.83). CONCLUSIONS: The new TBI-CareQOL Caregiver Strain CAT and corresponding 6-item short form were developed using established rigorous measurement development standards; this is the first self-reported measure developed to evaluate caregiver strain in caregivers of individuals with TBI.

OBJECTIVES: To establish the reliability and validity of the newly developed TBI-CareQOL patient reported outcomes 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: Computer-based surveys delivered through an on-line data capture platform. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Five hundred and sixty caregivers of individuals with TBI; this included two different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. INTERVENTION: Not Applicable MAIN OUTCOME MEASURES: 5 TBI-CareQOL item banks RESULTS: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α > .88); three-week test-retest reliability ranged from .75 to .90 across the two 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 (e.g., 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 patient-reported outcomes (PRO) measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

OBJECTIVE: To understand the factor structure of Health-Related Quality of Life (HRQOL) specific to caregivers of people living with Traumatic Brain Injury (TBI). DESIGN: Prospective, cross-sectional data collection. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: 558 caregivers of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service member/veterans; 85% female; 58% spouses; mean age = 46.12, SD =14.07 years) who have provided care for an average of 5.82 (SD = 5.40) years. INTERVENTIONS: Not Applicable. MAIN OUTCOMES MEASURE: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System (PROMIS) item banks (Anger, Anxiety, Depression, Social Isolation, Sleep Disturbance, Fatigue, Ability to Participate in Social Roles and Activities, Satisfaction with Social Roles and Activities, Emotional Support, Informational Support) and five TBI-CareQOL banks (Feelings of Loss–Self, Feelings of Loss–Person with TBI, Feeling Trapped, Caregiver-Specific Anxiety and Caregiver Strain). RESULTS: Confirmatory Factor Analysis (CFA) model fit indices were compared for 14 empirically and five theoretically derived models. CFA results indicated that the best model fit was for a six-factor model with dimensions that included: Mental Health, Social Support, Social Participation, Social Isolation, Physical Health, and Caregiver Emotion. CONCLUSION: Results indicated a six-factor model provided the best model fit for HRQOL in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL's factor structure provides preliminary evidence of the measurement system's construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.

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: Five-hundred-sixty caregivers of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: 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 two 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 (Confirmatory Fit Index [CFI]=0.96, Tucker Lewis Index [TLI]=.96, Root Mean Squared Error [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 CAT or a short-form. Clinical experts approved the content of the 6-item short forms of the two measures (three-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 two 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 a short-form was developed for ease of use in clinical situations. ...

OBJECTIVE: To develop a new patient-reported outcome measure that captures feelings of being trapped that are commonly experienced by caregivers of individuals with traumatic brain injury (TBI). DESIGN: Cross-sectional SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers of civilians with TBI (n=344) and caregivers of service members/veterans with TBI (n=216). INTERVENTIONS: Not applicable. OUTCOME MEASURES: TBI-CareQOL Feeling Trapped Item Bank RESULTS: From an initial item pool of 28 items, exploratory and confirmatory factor analyses supported the retention of 16 items. After graded response model (GRM) and differential item functioning (DIF) analyses were conducted, 15 items were retained in the final measure. GRM calibration data, along with clinical expert input, was used to choose a 6-item, static short form, and the calibration data was utilized for programming of the TBI-CareQOL Feeling Trapped computer adaptive test (CAT). CAT simulation analyses produced an r = 0.99 correlation between CAT scores and the full item-bank. Three-week short form test-retest reliability was very good (r = 0.84). CONCLUSIONS: The new TBI-CareQOL Feeling Trapped item bank was developed to provide a sensitive and efficient examination of the impact that feelings of being trapped, due to the caregiver role, have on health-related quality of life (HRQOL) for caregivers of individuals with TBI. Both the CAT and corresponding 6-item short form demonstrate excellent psychometric properties. Future work is needed to establish the responsiveness of this measure to clinical interventions for these caregivers.

PURPOSE: Caregivers of service members/veterans (SMVs) encounter a number of barriers when navigating the military health care system. The purpose of this study was to develop a new measure to assess potential caregiver frustration with the systems of care and benefits in the United States Departments of Defense and Veterans Affairs. METHOD: The TBI-CareQOL Military Health Care Frustration measure was developed using data from 317 caregivers of SMVs with TBI who completed an item pool comprised of 64 questions pertaining to their anger or frustration with accessing military health care services. RESULTS: Exploratory and confirmatory factor analyses supported the retention of 58 items. Constrained graded response model (GRM) overall fit and item fit analyses and differential item functioning investigations of age and education factors supported the retention of 43 items in the final measure. Expert review and GRM item calibration products were used to inform the selection of two 6-item static short forms (TBI-CareQOL Military Health Care Frustration-Self; TBI-CareQOL Military Health Care Frustration-Person with TBI) and to program the TBI-CareQOL Military Health Care Frustration computer adaptive test (CAT). Preliminary data supported the reliability (i.e., internal consistency and test-retest reliability), as well as validity (i.e., convergent, discriminant, and known-groups) of the new measure. CONCLUSIONS: The new TBI-CareQOL Military Health Care Frustration measure can be used to examine caregiver perceptions of and experience with the military health care system, to target improvements.

OBJECTIVE: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (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: 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 high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: 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 5 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 ...