26 research outputs found

    Suicidal Ideation Assessment in Individuals with Premanifest and Manifest Huntington Disease.

    Get PDF
    BACKGROUND: Huntington disease (HD) is associated with increased risk of suicide. OBJECTIVE: This study compares suicide ideation in HD to the general population, assesses factors associated with increased prevalence of suicidal thoughts, and compares clinician-rated to self-reported assessments of suicidal ideation. METHODS: We examined 496 participants with premanifest or manifest HD. Clinician-rated suicidal ideation was measured using the Problem Behaviors Assessment - short form. Self-reported ideation was measured using two items from the HDQLIFE Concern with Death and Dying item bank. Independent sample t-tests were conducted to compare the prevalence of suicidal thoughts between our HD sample and the U.S. POPULATION: Logistic regression analyses were used to determine characteristics associated with higher odds of clinically significant suicidal ideation. Kappa agreement coefficients were calculated to evaluate concurrence between clinician-rated and self-reported assessments. RESULTS: Our sample had a significantly higher occurrence of suicidal ideation (19.76%) and suicidal plans (2.1%) than the general population (p \u3c 0.0001). Odds of clinically significant suicidal ideation were 6.8 times higher in females (p = 0.04) on the clinician measure, and Hispanic/Latinos had 10.9 times higher odds than non-Hispanics (p = 0.025) on the self-report measure. Clinician-rated assessment had fair agreement (k = 0.2-0.4) with self-reported assessments, except in early stage HD where there was no overlap in the identification of participants with clinically significant suicidal ideation. DISCUSSION: Assessment for suicidal ideation and clinically significant suicidal thoughts in HD with a multimodal approach that includes clinician-rated and self-report measures is critical at all stages of the disease

    HDQLIFE and neuro‐QoL physical function measures: Responsiveness in persons with huntington’s disease

    Full text link
    BackgroundHuntington’s disease (HD) is a neurological disorder that causes severe motor symptoms that adversely impact health‐related quality of life. Patient‐reported physical function outcome measures in HD have shown cross‐sectional evidence of validity, but responsiveness has not yet been assessed.ObjectivesThis study evaluates the responsiveness of the Huntington Disease Health‐Related Quality of Life (HDQLIFE) and the Quality of Life in Neurological Disorders (Neuro‐QoL) physical function measures in persons with HD.MethodsA total of 347 participants completed baseline and at least 1 follow‐up (12‐month and 24‐month) measure (HDQLIFE Chorea, HDQLIFE Swallowing Difficulties, HDQLIFE Speech Difficulties, Neuro‐QoL Upper Extremity Function, and/or Neuro‐QoL Lower Extremity Function). Of the participants that completed the baseline assessment, 338 (90.9%) completed the 12‐month assessment, and 293 (78.8%) completed the 24‐month assessment. Standardized response means and general linear models evaluated whether the physical function measures were responsive to self‐reported and clinician‐rated change over time.ResultsSmall to moderate effect sizes for the standardized response means supported 12‐month and 24‐month responsiveness of the HDQLIFE and Neuro‐QoL measures for those with either self‐reported or clinician‐rated declines in function. General linear models supported 12‐month and 24‐month responsiveness for all HRQOL measures relative to self‐reported declines in health, but generally only 24‐month responsiveness was supported relative to clinician‐rated declines in function.ConclusionsLongitudinal analyses indicate that the HDQLIFE and the Neuro‐QoL physical function measures are sensitive to change over time in individuals with HD. Thus, these scales exhibit evidence of responsiveness and may be useful outcome measures in future clinical trials. © 2019 International Parkinson and Movement Disorder SocietyPeer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/154235/1/mds27908_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/154235/2/mds27908.pd

    Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington\u27s Disease.

    Get PDF
    BACKGROUND: Huntington\u27s disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIADTM is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable. OBJECTIVES: The current study evaluates the reliability and validity of the HD-PRO-TRIADTM in a well-characterized sample of individuals with HD. METHODS: Four-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n = 97 late) completed the HD-PRO-TRIADTM questionnaire. Clinician-rated assessments from the Unified Huntington Disease Rating Scales, the short Problem Behaviors Assessment, and three generic measures of HRQOL (WHODAS 2.0, RAND-12, and EQ-5D) were also examined. RESULTS: Internal reliability for all domains and the total HD-PRO-TRIADTM was excellent (all Cronbach\u27s α \u3e0.93). Convergent and discriminant validity were supported by significant associations between the HD-PRO-TRIADTM domains, and other patient reported outcome measures as well as clinician-rated measures. Known groups validity was supported as the HD-PRO-TRIADTM differentiated between stages of the disease. Floor and ceiling effects were generally within acceptable limits. There were small effect sizes for 12-month change over time and moderate effect sizes for 24-month change over time. CONCLUSIONS: Findings support excellent internal reliability, convergent and discriminant validity, known groups validity, and responsiveness to change over time. The current study supports the clinical efficacy of the HD-PRO-TRIADTM. Future research is needed to assess the test-retest reliability of this measure

    Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington\u27s Disease.

    Get PDF
    Up to 90% of individuals with Huntington\u27s disease (HD)-a progressive, inherited neurodegenerative disorder-experience apathy. Apathy is particularly debilitating because it is marked by a reduction in goal-directed behaviors, including self-care, social interactions, and mobility. The objective of this study was to examine relationships between variables of apathy, functional status, physical function, cognitive function, behavioral status/emotional function, and health-related quality of life. Clinician-rated measures of physical, cognitive, and behavioral function, including one clinician-rated item on apathy, and self-reported measures of physical function, health-related quality of life, and emotional, cognitive, and social function were collected in a single session from 487 persons with the HD mutation (prodromal, N=193; early-stage manifest, N=186; late-stage manifest, N=108). Multiple linear regression models were used to examine which outcomes best predicted clinician-rated apathy after controlling for disease stage. Greater apathy related to less independence, increased motor impairment, and more clinician-rated behavioral problems (i.e., anger, irritability, depression). Similarly, poorer self-reported health-related quality of life; greater chorea; greater upper- and lower-extremity dysfunction; greater speech and swallowing dysfunction; worse anxiety, depression, and behavioral dyscontrol; worse cognitive function; and less satisfaction with social roles related to greater apathy. In conclusion, apathy related to physical, cognitive, and behavioral dysfunction across disease stages. Future work should explore whether clinical interventions targeting different functional domains may have the potential to reduce apathy in this patient population

    Agreement Between Clinician-Rated Versus Patient-Reported Outcomes in Huntington Disease

    Get PDF
    BACKGROUND: Clinician-rated measures of functioning are often used as primary endpoints in clinical trials and other behavioral research in Huntington disease. As study costs for clinician-rated assessments are not always feasible, there is a question of whether patient self-report of commonly used clinician-rated measures may serve as acceptable alternatives in low risk behavioral trials. AIM: The purpose of this paper was to determine the level of agreement between self-report and clinician-ratings of commonly used functional assessment measures in Huntington disease. DESIGN: 486 participants with premanifest or manifest Huntington disease were examined. Total Functional Capacity, Functional Assessment, and Independence Scale assessments from the Unified Huntington Disease Rating scale were completed by clinicians; a self-report version was also completed by individuals with Huntington disease. Cronbach\u27s α was used to examine internal consistency, one-way analysis of variance was used to examine group differences, and paired t tests, kappa agreement coefficients, and intra-class correlations were calculated to determine agreement between raters. RESULTS: Internal consistency for self-reported ratings of functional capacity and ability were good. There were significant differences between those with premanifest, early-, and late-stage disease; those with later-stage disease reported less ability and independence than the other clinical groups. Although self-report ratings were not a perfect match with associated clinician-rated measures, differences were small. Cutoffs for achieving specified levels of agreement are provided. CONCLUSIONS: Depending on the acceptable margin of error in a study, self-reported administration of these functional assessments may be appropriate when clinician-related assessments are not feasible

    Increased ventral striatal volume in college-aged binge drinkers

    Get PDF
    BACKGROUND Binge drinking is a serious public health issue associated with cognitive, physiological, and anatomical differences from healthy individuals. No studies, however, have reported subcortical grey matter differences in this population. To address this, we compared the grey matter volumes of college-age binge drinkers and healthy controls, focusing on the ventral striatum, hippocampus and amygdala. METHOD T1-weighted images of 19 binge drinkers and 19 healthy volunteers were analyzed using voxel-based morphometry. Structural data were also covaried with Alcohol Use Disorders Identification Test (AUDIT) scores. Cluster-extent threshold and small volume corrections were both used to analyze imaging data. RESULTS Binge drinkers had significantly larger ventral striatal grey matter volumes compared to controls. There were no between group differences in hippocampal or amygdalar volume. Ventral striatal, amygdalar, and hippocampal volumes were also negatively related to AUDIT scores across groups. CONCLUSIONS Our findings stand in contrast to the lower ventral striatal volume previously observed in more severe forms of alcohol use disorders, suggesting that college-age binge drinkers may represent a distinct population from those groups. These findings may instead represent early sequelae, compensatory effects of repeated binge and withdrawal, or an endophenotypic risk factor

    Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments

    Get PDF
    Health related quality of life (HRQOL) measures have become increasingly important in the management of glioma patients in both research and clinical practice settings. Functional impairment is common in low-grade and high-grade glioma patients as the disease has both oncological and neurological manifestations. Natural disease history as well as medical or surgical treatment can negatively influence HRQOL. There are no universal standards for HRQOL assessment in glioma patients. In this study, we examine patient perspectives on functional outcome domains and report the prevalence of impairments rates using the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL item banks as measures of HRQOL. Retrospective analysis of a prospectively collected dataset involving 79 glioma patients reveals that quality of life concerns are the most important consideration behind making decisions about treatment in 80.7% of patients. The prevalence of functional impairment by PROMIS and NEURO-QOL assessment is high, ranging from 28.6% in the physical function domain to 43.9% in the cognitive function domain. Pain and anxiety related to physical decline is higher in LGG patients compared to HGG patients. Aphasia severity also impacts HRQOL. The results of this study suggest that the PROMIS and NEURO-QOL assessments may be important HRQOL metrics for future use in larger clinical research and clinical trial settings

    An Eye to a Kill: Using Predatory Bacteria to Control Gram-Negative Pathogens Associated with Ocular Infections

    Get PDF
    Ocular infections are a leading cause of vision loss. It has been previously suggested that predatory prokaryotes might be used as live antibiotics to control infections. In this study, Pseudomonas aeruginosa and Serratia marcescens ocular isolates were exposed to the predatory bacteria Micavibrio aeruginosavorus and Bdellovibrio bacteriovorus. All tested S. marcescens isolates were susceptible to predation by B. bacteriovorus strains 109J and HD100. Seven of the 10 P. aeruginosa isolates were susceptible to predation by B. bacteriovorus 109J with 80% being attacked by M. aeruginosavorus. All of the 19 tested isolates were found to be sensitive to at least one predator. To further investigate the effect of the predators on eukaryotic cells, human corneal-limbal epithelial (HCLE) cells were exposed to high concentrations of the predators. Cytotoxicity assays demonstrated that predatory bacteria do not damage ocular surface cells in vitro whereas the P. aeruginosa used as a positive control was highly toxic. Furthermore, no increase in the production of the proinflammatory cytokines IL-8 and TNF-alpha was measured in HCLE cells after exposure to the predators. Finally, injection of high concentration of predatory bacteria into the hemocoel of Galleria mellonella, an established model system used to study microbial pathogenesis, did not result in any measurable negative effect to the host. Our results suggest that predatory bacteria could be considered in the near future as a safe topical bio-control agent to treat ocular infections. © 2013 Shanks et al

    Validity of the Patient-Reported Outcome Measurement Information System (PROMIS) Sexual Interest and Satisfaction Measures in Men Following Radical Prostatectomy.

    No full text
    PURPOSE: Patient-reported outcomes after radical prostatectomy have focused on erectile function. To date, no studies have validated the Patient-Reported Outcome Measurement Information System (PROMIS) Sexual Interest and Satisfaction single item measures in patients with prostate cancer, nor have studies examined how these measures relate to erectile function. In addition, data are lacking with regard to the clinical responsiveness of these measures to treatment. We sought to validate and examine the clinical utility of these measures in men after radical prostatectomy. PATIENTS AND METHODS: We identified men who underwent a robotic radical prostatectomy from May 2014 to January 2016 in the Michigan Urological Surgery Improvement Collaborative. A single item from the PROMIS Global Satisfaction With Sex Life subdomain and a single item from the PROMIS Interest in Sexual Activity subdomain were administered. Erectile function was also assessed. Differences between baseline and 24-month T-scores for both PROMIS interest and satisfaction were examined. Multilevel models were constructed to examine change over time. RESULTS: A total of 1,604 patients were included in the analysis. Convergent and discriminant validity of the PROMIS measures was supported. The mean PROMIS interest T-score decreased significantly from baseline to 3 months (P = .001) and significantly increased from 3 months to 24 months in this cohort, with 24-month scores exceeding baseline scores (P \u3c .001). The mean PROMIS satisfaction T-score declined from baseline to 3 months and increased from 3 months to 24 months (P \u3c .002). CONCLUSION: PROMIS Global Satisfaction With Sex Life and Interest in Sexual Activity single-item measures are fundamental measures in prostate cancer survivorship. Patients are interested in sex despite functional losses and can salvage satisfaction, thereby giving insight into attainable patient-centered survivorship goals for sexual recovery after radical prostatectomy
    corecore