Pain-Related Stigma and Its Associations With Clinical and Experimental Pain Severity in Youth With Chronic Musculoskeletal Pain Conditions.

OBJECTIVE: Many children with chronic musculoskeletal pain conditions experience stigma which can have negative downstream consequences. This study compares ratings of clinical pain (current pain intensity and pain interference), experimental pain (temporal summation, cold water tolerance, and cold pain intensity), and pain-related stigma among three groups of youth with rheumatic conditions. The relations among ratings of pain-related stigma and pain variables were explored. METHODS: Eighty-eight youth aged 8-17 years with a diagnosis of juvenile idiopathic arthritis (JIA = 32), juvenile fibromyalgia (JFM = 31), or non-specific chronic pain (NSCP = 25) completed measures of clinical pain ratings (average 7-day pain intensity, day of assessment pain (DoA), and pain interference), experimental pain (cold pain tolerance, cold pain intensity, and temporal summation of mechanical pain), and pain-related stigma. Data analysis compared pain-related stigma and pain ratings across the three groups and examined the relations among pain-related stigma and pain ratings. RESULTS: Youth with JFM reported higher ratings of clinical pain and pain-related stigma than their counterparts with NSCP or JIA. However, there were no differences in experimental pain. Pain-related stigma was associated with greater ratings of pain interference, particularly for those with JIA and NSCP. Pain-related stigma was also associated with greater average daily pain intensity but not DoA. CONCLUSION: Youth with medically unexplained pain report greater stigma and worse pain than their peers; thus, robust assessment of pain in this population is necessary. Future work should longitudinally explore the impact of pain-related stigma on pain outcomes and treatment responses.

Daily Variation in Sleep Quality is Associated With Health-Related Quality of Life in People With Spinal Cord Injury.

OBJECTIVE: Although sleep difficulties are common after spinal cord injury (SCI), little is known about how day-to-day fluctuations in sleep quality affects health-related quality of life (HRQOL) among these individuals. We examined the effect of sleep quality on same-day HRQOL using ecological momentary assessment methods over a 7-day period. DESIGN: Repeated-measures study involving 7 days of home monitoring; participants completed HRQOL measures each night and ecological momentary assessment ratings 3 times throughout the day; multilevel models were used to analyze data. SETTING: Two academic medical centers. PARTICIPANTS: A total of 170 individuals with SCI (N=170). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Daily sleep quality was rated on a scale of 0 (worst) to 10 (best) each morning. Participants completed end-of-day diaries each night that included several HRQOL measures (Sleep Disturbance, Sleep-related Impairment, Fatigue, Cognitive Abilities, Pain Intensity, Pain Interference, Ability to Participate in Social Roles and Activities, Depression, Anxiety) and ecological momentary assessment ratings of HRQOL (pain, fatigue, subjective thinking) 3 times throughout each day. RESULTS: Multilevel models indicated that fluctuations in sleep quality (as determined by end-of-day ratings) were significantly related to next-day ratings of HRQOL; sleep quality was related to other reports of sleep (Sleep Disturbance; Sleep-related Impairment; Fatigue) but not to other aspects of HRQOL. For ecological momentary assessment ratings, nights of poor sleep were related to worse pain, fatigue, and thinking. Generally, sleep quality showed consistent associations with fatigue and thinking across the day, but the association between sleep quality and these ecological momentary assessment ratings weakened over the course of the day. CONCLUSIONS: Findings highlight the important association between sleep and HRQOL for people with SCI. Future work targeting sleep quality improvement may have positive downstream effects for improving HRQOL in people with SCI.

Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.

OBJECTIVE: Previous work in Huntington's disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well-being (PAW); however, it was unknown whether HD-validated patient-reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD-validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12- and 24-month changes in HD-validated PROs. METHODS: This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early-stage manifest, and n = 101 late-stage manifest HD). A single, multivariate linear mixed-effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD-validated PRO) and interactions between M&P and a given PRO. Linear-mixed models were also used to assess if baseline M&P predicted HD-validated PROs at 12 and 24 months. RESULTS: Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD-validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages. INTERPRETATION: These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.

Validation of the Pittsburgh Fatigability Scale in a mixed sample of adults with and without chronic conditions.

The aim of this study was to validate the Pittsburgh Fatigability Scale in three different groups: adults with multiple sclerosis (n = 65), fibromyalgia (n = 64), and healthy adults (n = 86). Participants completed the Pittsburgh Fatigability Scale and other self-report measures. While findings supported the internal consistency of the Pittsburgh Fatigability Scale (all Cronbach's alpha ⩾ 0.85), standard error of measurement estimates were larger than hypothesized. In addition, while item-level reliability was generally supported, item-total correlations for two items were lower than expected. Convergent and discriminant validity were supported, and the Pittsburgh Fatigability Scale was able to distinguish between individuals with and without chronic disease. Overall, the Pittsburgh Fatigability Scale exhibited acceptable psychometric properties.

Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks.

PURPOSE: As Huntington disease (HD) progresses, speech and swallowing difficulties become more profound. These difficulties have an adverse effect on health-related quality of life (HRQOL), thus psychometrically robust measures of speech and swallowing are needed to better understand the impact of these domains across the course of the disease. Therefore, the purpose of this study is to establish the clinical utility of two new patient-reported outcome measures (PROs), HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties. METHODS: Thirty-one participants with premanifest or manifest HD, and 31 age- and sex-matched healthy control participants were recruited for this study. Participants completed several PROs [HDQLIFE Speech Difficulties, HDQLIFE Swallowing Difficulties, Communication Participation Item Bank (CPIB)], as well as several clinician-rated assessments of speech and functioning. A computational algorithm designed to detect features of spoken discourse was also examined. Analyses were focused on establishing the reliability and validity of these new measures. RESULTS: Internal consistency was good for Swallowing (Cronbach's alpha = 0.89) and excellent for Speech and the CPIB (both Cronbach's alpha ≥ 0.94), and convergent/discriminant validity was supported. Known groups validity for the PROs was supported by significant group differences among control participants and persons with different stages of HD (all p < 0.0001). All PROs were able to distinguish those with and without clinician-rated dysarthria (likelihood ratios far exceeded the threshold for clinical decision making [all ≥ 3.28]). CONCLUSIONS: Findings support the clinical utility of the HDQLIFE Speech and Swallowing PROs and the CPIB for use across the HD disease spectrum. These PROs also have the potential to be clinically useful in other populations.

Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).

BACKGROUND: The majority of persons with Huntington disease (HD) experience mental health symptoms. Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period. METHODS: At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed. RESULTS: Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change). CONCLUSIONS: The Neuro-QoL and PROMIS mental health PROs demonstrated strong psychometric reliability, as well as responsiveness to self-reported and clinician-rated change over time in people with HD.

Sleep impairment is related to health-related quality of life among caregivers of lower-functioning traumatic brain injury survivors.

Objective: The purpose of this study was to examine perceived sleep-related impairment in caregivers of individuals with traumatic brain injury (TBI). Specifically, we examined the relationship between caregiver-perceived sleep-related impairment and different aspects of health-related quality of life (HRQOL) and explored whether these relationships were moderated by the perceived level of everyday function in the person with TBI. Method: Three hundred forty-one caregivers of individuals with TBI completed surveys to determine whether the association between sleep-related impairment and HRQOL was moderated by caregiver-perceived functional impairment of the person with injury. Participants completed measures from the Patient-Reported Outcomes Measurement Information System and the TBI-CareQOL. These measures were used to examine different aspects of HRQOL: caregiver-specific HRQOL, mental HRQOL, social HRQOL, and fatigue. The Mayo-Portland Adaptability Inventory-4 was used to measure caregiver perceptions of the level of everyday function in the person with injury. Results: Results indicated that caregiver-perceived sleep-related impairment was associated with each of the four HRQOL scores. This relationship was moderated by the caregiver-reported level of everyday function in the person with TBI for both caregiver-specific HRQOL and fatigue but not mental or social HRQOL. For caregiver-specific HRQOL and fatigue, caregiver-perceived sleep-related impairment was associated with worse HRQOL for those caring for individuals with lower perceived levels of everyday function, but not for those caring for individuals with higher levels of everyday function. Conclusions: Interventions to improve caregiver sleep and HRQOL should consider both psychosocial and environmental factors (i.e., factors related to the person with the TBI). (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Do emotional distress and functional problems in persons with traumatic brain injury contribute to perceived sleep-related impairment in caregivers?

OBJECTIVE: The goal of this study was to examine the association between characteristics of persons with traumatic brain injury (PwTBI) and perceived sleep-related impairment of the caregivers. METHOD: Fifty-two dyads (n = 23 civilians, n = 29 service members/veterans [SMVs]) were enrolled. Caregivers completed the Patient-Reported Outcomes Measurement Information System Sleep-Related Impairment computer adaptive test, and PwTBI completed Quality of Life in Neurological Disorders measures of depression, anxiety, anger, cognitive functioning, and upper and lower extremity functioning. Hierarchical linear regression models, stratified by civilian/SMV group, were employed to assess prediction of caregiver-perceived sleep-related impairment from emotional distress of the PwTBI (anxiety, depressed mood, and anger) and perceived functional status of the PwTBI (cognitive, upper extremity, lower extremity functioning). RESULTS: Compared with caregivers of civilians, caregivers of SMVs reported higher perceived sleep-related impairment. Regression results showed that characteristics of the PwTBI accounted for moderate amounts of variance in the sleep-related impairment of caregivers of both civilians and SMVs. Within-group analyses showed that the strongest predictor of sleep-related impairment of caregivers of civilians was self-reported cognitive function of the PwTBI (ß = -0.82, p = .08); the strongest predictor of sleep-related impairment of caregivers of SMVs was self-reported anger of the PwTBI (ß = 0.54, p = .07). CONCLUSIONS: In both caregivers of civilians and SMVs with TBI, characteristics of the PwTBI were related to perceived caregiver sleep-related impairment. These preliminary data can inform future research with larger samples that examine the impact of multiple characteristics of the caregiver and care recipient on caregiver sleep. Findings highlight the potential importance of considering the dynamics of the dyad in rehabilitation programming not only for the PwTBI but for caregivers as well. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Health literacy, health outcomes, and the caregiver role in traumatic brain injury.

Purpose/Objective: The purpose of this study is to estimate the occurrence of low health literacy among caregivers of people with traumatic brain injury (TBI), and to evaluate associations of health literacy with caregiver health-related quality of life (HRQOL) and perceptions of the caregiving role. Research Method/Design: The TBI-CareQOL measurement system assesses important self-reported outcomes for caregivers of civilians or service members/veterans (SMVs) with TBI. The validation phase included the Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT) measure. Multivariable regression evaluated the impact of low health literacy on generic and TBI-specific HRQOL and appraisals of the caregiving role, adjusted for caregiver gender, race/ethnicity and education, and the functional status of the TBI care recipient. Results: Among 131 caregivers, 28 (21%) had low health literacy. Compared with the high health literacy group, the group with low health literacy had fewer women, more racial/ethnic minorities, and lower education (all p < .05). The low health literacy group reported more subjective caregiving burden, less satisfaction with their relationship with the TBI recipient, less caregiving mastery, and poorer physical health (all p < .05). There were no differences between health literacy groups in caregiving ideology, caregiver-specific HRQOL or general mental health. Conclusions/Implications: A better understanding of the links between health literacy and caregiver HRQOL and the caregiving role can help identify strategies to meet the needs of this underserved population. Tailored interventions for caregivers with low health literacy could improve outcomes for both the caregiver and the care recipient. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Assessing vigilance in caregivers after traumatic brain injury: TBI-CareQOL Caregiver Vigilance.

OBJECTIVE: Caregivers of individuals with traumatic brain injury (TBI) frequently experience anxiety related to the caregiver role. Often this is due to a caregiver's perceived need to avoid people and situations that might upset or "trigger" the care recipient. There are currently no self-report measures that capture these feelings; thus, this article describes the development and preliminary validation efforts for the TBI-Caregiver Quality of Life (CareQOL) Caregiver Vigilance item bank. DESIGN: A sample of 532 caregivers of civilians (n = 218) or service members/veterans (SMVs; n = 314) with TBI completed 32 caregiver vigilance items, other measures of health-related quality of life (RAND-12, Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Social Isolation, Caregiver Appraisal Scale), and the Mayo-Portland Adaptability Inventory-4. RESULTS: The final item bank contains 18 items, as supported by exploratory and confirmatory factor analysis, item response theory graded response modeling (GRM), and differential item functioning investigations. Expert review and GRM calibration data informed the selection of a 6-item short form and programming of a computer adaptive test. Internal consistency reliability for the different administration formats were excellent (reliability coefficients ≥ .90). Three-week test-retest stability was supported (i.e., r ≥ .78). Correlations between vigilance and other self-report measures supported convergent and discriminant validity (0.01 ≤ r ≤ .69). Known-groups validity was also supported. CONCLUSIONS: The new TBI-CareQOL Caregiver Vigilance computer adaptive test and corresponding 6-item short form were developed using established rigorous measurement development standards, providing the first self-report measure to evaluate caregiver vigilance. This development work indicates that this measure exhibits strong psychometric properties. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Understanding domains that influence perceived stigma in individuals with Huntington disease.

PURPOSE/OBJECTIVE: Persons with Huntington's disease experience stigma because of their gene status. Whereas perceived stigma has been found to impact quality of life, it is unknown how different health domains (i.e., physical, emotional, cognitive, and social) are associated with feelings of stigma. In addition, stigma research has been limited by the use of cross-sectional analyses. The current study seeks to explore which domains are associated with stigma in a longitudinal assessment of persons with Huntington's disease. Research Method/Design: The current analysis used data from the HDQLIFE study, which included 479 participants at baseline, 315 participants at 12 months, and 277 participants at 24 months. A multilevel model (time nested within person) was used to examine the effect of physical, emotional, cognitive, and social health on perceived stigma (Neuro-QoL Stigma) while controlling for demographic factors. RESULTS: Findings indicate that physical, emotional, and cognitive health were associated with perceived stigma, whereas social health and demographic factors were not. Within-subject, time-varying predictors accounted for 20.2% of the variance in stigma. CONCLUSIONS/IMPLICATIONS: Our findings suggest that perceived stigma is influenced by physical, emotional, and cognitive health, which may be treated with physical therapy, emotional counseling, and cognitive rehabilitation. Application of these therapies may relieve the burden of perceived stigma; however, more research is needed in this area. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

TBI-CareQOL military health care frustration in caregivers of service members/veterans with traumatic brain injury.

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 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 the 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. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Spirituality and outcomes in caregivers of persons with traumatic brain injury (TBI).

PURPOSE/OBJECTIVE: Spiritual well-being has been associated with better quality of life outcomes in caregivers, but the associations among the care recipient's functional status, the caregiver's spiritual well-being, and the caregiver's health-related quality of life (HRQOL) is unknown. Research Method/Design: The study examined the Spiritual Well-Being Scale in caregivers of persons with traumatic brain injury (TBI; n = 335). Participants completed measures from the Patient-Reported Outcomes Measurement Information System, the Quality of Life in Caregivers of TBI, and the Caregiver Appraisal Scale. The Mayo-Portland Adaptability Inventory-4 (MPAI-4) measured care recipient's functional status. The association between religious well-being and existential well-being and HRQOL were examined with Pearson correlation coefficients. Multiple linear regressions examined the interaction between caregiver well-being and care recipient functional status on HRQOL outcomes accounting for demographic variables. RESULTS: Less favorable caregiver HRQOL was associated with military affiliation, male status, spousal caregiver relationship, and White race. MPAI-4 was moderately associated with all HRQOL subdomains. For spiritual well-being, existential well-being was moderately correlated with 9 of 16 HRQOL subdomains in comparison to religious well-being that demonstrated small correlations with 3 of 16 subdomains. MPAI-4 had negative effects on HRQOL regardless of spiritual well-being with higher existential well-being reducing the negative impact of the care recipient's functional impairment on HRQOL for significant HRQOL interactions. CONCLUSIONS/IMPLICATIONS: Interventions that encourage development and maintenance of life purpose and meaning in caregivers of persons with TBI, and less so, spirituality, might have beneficial effects on HRQOL when the person with injury has more functional limitations. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Emotional Suppression and Hypervigilance in Military Caregivers: Relationship to Negative and Positive Affect.

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.

Measuring emotional suppression in caregivers of adults with traumatic brain injury.

OBJECTIVE: Caregivers of individuals with traumatic brain injury (TBI) often feel pressure to maintain the appearance that they are emotionally well adjusted, despite feelings to the contrary. Because there are currently no measures examining this construct, this article focuses on the development of a new measure that is specific to caregivers of people with TBI. DESIGN: A total of 533 caregivers of civilians with TBI (n = 218) or service members/veterans (SMVs) with TBI (n = 315) completed 43 emotional suppression items, as well as other patient-reported outcomes and an estimate of the functional ability of the person with TBI. RESULTS: Exploratory and confirmatory factor analyses supported the retention of 25 items. Graded response model (GRM) analyses and differential item functioning (DIF) studies supported the retention of 21 items in the final measure. Expert review and GRM calibration data were used to develop a 6-item static short form (SF) and program a computer adaptive test (CAT). Internal consistency was excellent for both the CAT and SF (reliabilities ≥ 0.91); 3-week test-retest stability was good (all intraclass correlations ≥ 0.89). Convergent validity was supported by moderate associations between TBI-CareQOL Emotional Suppression and related measures (rs from 0.47 to 0.59); discriminant validity was supported by small correlations between Emotional Suppression and positive aspects of caregiving and physical health (rs from 0.14 to 0.28). Known-groups validity was also supported. CONCLUSIONS: The new TBI-CareQOL Emotional Suppression CAT and 6-item short form is the first self-report measure of this construct in this population. Our findings suggest this new measure has strong psychometric properties. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

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

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. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD).

PURPOSE: Individuals with Huntington disease (HD) experience progressive cognitive decline that may appear years before motor manifestations of the disease. These declines have a profound effect on health-related quality of life (HRQOL) over the disease course, and thus it is important that self-report measures of cognitive function are validated for use in longitudinal studies. METHODS: 359 individuals with premanifest or manifest HD completed baseline and at least one follow-up (12- and 24-month) assessment. Neuro-QoL™ Cognitive Function was administered at each time-point. Participants completed a self-reported global rating of cognitive change, as well as performance-based cognitive changes (using the Symbol Digit Modalities Test). Standardized response means (SRMs) and general linear models evaluated whether Neuro-QoL™ Cognitive Function was responsive to change over time with respect to self-reported and performance-based anchors. Test-retest reliability and known-group validity were also examined. RESULTS: Responsiveness was supported by effect sizes that were small in magnitude, but in the expected direction relative to self-reported and performance-based change. General linear models generally supported 12- and 24-month responsiveness relative to self-reported cognitive change and 12-month responsiveness relative to performance-based change. Test-retest reliability was excellent, and the measure exhibited known-group validity. CONCLUSION: Longitudinal analyses generally indicate that the Neuro-QoL™ Cognitive Function measure is sensitive to change over time in individuals with HD. Neuro-QoL Cognitive Function changes reflect self-reported cognitive change at 12 and 24 months and performance-based change at 12 months. This measure may be useful in clinical trials or longitudinal observation studies.

TBI-CareQOL family disruption: Family disruption in caregivers of persons with TBI.

PURPOSE: Family disruption is often an indirect consequence of providing care for a person with traumatic brain injury (TBI). This article describes the development and preliminary validation of a Family Disruption scale designed for inclusion within the TBI-CareQOL measurement system. METHOD/DESIGN: Five hundred thirty-four caregivers of persons with TBI (service member/veteran n = 316; civilian n = 218) completed the Family Disruption scale, alongside several other measures of caregiver strain and health-related quality of life. Classical test theory and item response theory (IRT)-based analyses were conducted to develop, and establish reliability and validity of, this scale. RESULTS: Exploratory and confirmatory factor analysis, as well as Samejima's graded response model-related IRT fit analyses, supported the development of a 3-item scale. This final scale is scored on a T score metric (M = 50; SD = 10); higher scores are indicative of more family disruption. Reliability (internal consistency; test-retest stability) was supported for both caregiver groups, and average administration times were under 10 s. Convergent and discriminant validity were supported by strong correlations between Family Disruption and measures of caregiver burden, and smaller correlations with positive aspects of caregiving. As evidence of known-groups validity, caregivers of lower-functioning persons with TBI experienced more family disruption than caregivers of higher functioning individuals. CONCLUSIONS: The TBI-CareQOL Family Disruption scale is a brief, reliable, and valid assessment of caregiver perceptions of how caring for an individual with a TBI interferes with family life. This measure is well-suited for inclusion in studies seeking to support family functioning in persons with TBI. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.

BACKGROUND: Social health is an important concern in persons with Huntington's disease (HD); however, there is little literature examining this construct in this population. OBJECTIVE: While cross-sectional data supports the clinical utility of two Neuro-QoL social health measures in persons with HD, data is still needed to establish their longitudinal validity. METHODS: Participants (N = 358) completed baseline and at least one follow-up (12- and 24-month) assessment that included the completion of Neuro-QoL Social Health computer adaptive tests (CATs) and short forms (for Ability to Participate in Social Roles and Activities [SRA] and Satisfaction with SRA). Test-retest reliability was examined using intra class correlations, and one-way ANOVAs with Bonferroni post-hoc contrasts were used to determine whether there were group differences among premanifest, early- and late-stage HD participants on the Social health measures. In addition, standardized response means were used to examine longitudinal responsiveness, and mixed or general linear models were used to examine change over time (relative to self-reported change on an associated anchor item about social health and clinician-rated change based on Total Functional Capacity scores from the UHDRS). RESULTS: Test-retest reliability of the measures was excellent (ICCs ranged from 0.82 to 0.87 across the different measures) and persons with greater disease burden reported more problems with social health than those at earlier stages in the disease process (all p < 0.0001). Responsiveness was supported for all measures except the Ability to Participate in SRA CAT; participants who had self-reported or clinician-rated declines in health generally had 12- and 24-month declines on the Neuro-QoL measures. CONCLUSIONS: Findings indicate that these measures may be useful for studies attempting to assess change in social health over time.