Memory functioning in post‐traumatic stress disorder: objective findings versus subjective complaints

Although memory complaints are common in post‐traumatic stress disorder (PTSD), the only published study of objective and subjective memory in PTSD by Roca and Freeman indicates that subjective complaints may not accurately reflect objective performance. The present study examined memory in 21 PTSD patients, 20 combat controls and 23 non‐combat controls using two objective memory measures (Rey Auditory Verbal Learning Test; Backward Digit Span) and one subjective measure (Memory Functioning Questionnaire). Analysis of variances (ANOVAs) and analysis of co‐variances generally did not reveal group differences for objective memory performance. For subjective memory complaints, ANOVAs indicated group differences; PTSD participants reported more memory problems than controls. These differences disappeared, however, when depression was included as a covariate. Also, we provide some preliminary evidence that depression may mediate the relationship between PTSD symptomatology and subjective memory complaints. Findings suggest that reductions in depressive symptomatology in PTSD may be associated with decreased subjective memory complaints. Copyright © 2010 John Wiley & Sons, Ltd.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/86943/1/smi1355.pd

Healthâ Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study

BackgroundCurrently, no published, validated patientâ reported outcome (PRO) measures of healthâ related quality of life (HRQOL) exist for use with neonatal brachial plexus palsy (NBPP). NBPP is a debilitating condition that occurs during the perinatal period, resulting in paralysis/paresis and loss of sensation in the affected arm. Commonly used NBPP measures are not comprehensive and do not fully account for clinically meaningful changes in function or progression of the disorder.ObjectiveTo evaluate important components of HRQOL for children with NBPP and identify where new PRO measures are needed.DesignEleven focus groups comprising children with NBPP (4), family members (6), and professional providers (1) to assess HRQOL.SettingBrachial plexus clinic.ParticipantsChildren with NBPP, their parents, and professional providers.Inclusion CriteriaChildren 7â 17 years old with NBPP; parents/caregivers at least 18 years of age; professionals with â ¥2 years’ experience providing NBPP clinical care; ability to read and speak English fluently.MethodsFocus group sessions were recorded, transcribed verbatim, and deidentified. Qualitative frequency analysis identified different aspects of HRQOL relevant to NBPP. This analysis expands on the groundedâ theory approach to qualitative analysis, including development of a domain framework, open and axial coding, selective coding, and descriptive analysis. The resulting HRQOL domain framework (and frequency analysis) was then compared to the domain framework for existing PRO measures (PROMIS and Neuroâ QoL) to identify components of HRQOL where new PRO measures are needed for NBPP.Main Outcome MeasuresNot applicable.ResultsAlthough many physical, social, and emotional health domains were captured by existing PRO measures, some significant NBPPâ specific topics emerged from qualitative analysisâ functionality, sensory, physical appearance, arm/hand compensation and preference, explaining functionality/appearance to others, and selfâ esteem and body image concerns.ConclusionsDevelopment of sensitive and specific measures capturing arm/hand function and body image would improve the clinical care of patients with NBPP.Level of EvidenceNot applicable.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/146831/1/pmr2383.pd

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

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

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

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

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.

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.

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

Advance care planning and health-related quality of life in Huntington disease: Results from a multicenter national study

OBJECTIVE: With Huntington disease (HD), a fatal neurodegenerative disease where the prevalence of suicidal thoughts and behavior (STB) remains elevated as compared to other neurological disorders, it is unknown whether STB and health-related quality of life (HRQoL) affect plans for the end of life or more broadly, advance care planning (ACP). Conversely, it is unknown whether ACP would provoke future changes to STB and HRQoL. Therefore, we sought to evaluate whether STB and HRQoL patient-reported outcomes (PROs) contribute to ACP and whether ACP relates to changes in STB and HRQoL at 24 months. METHODS: HD-validated clinician- and patient-assessments (i.e., HRQoL PROs) were obtained at baseline enrollment, 12 and 24 months through our multi-center study (HDQLIFE™) throughout the United States among people with premanifest, early-stage, and late-stage manifest HD. We used linear mixed-effects models to determine the relationships between STB and HRQoL at baseline and HDQLIFE End of Life Planning at follow-up. Separate linear mixed-effects models were used to assess the relationship between HDQLIFE End of Life Planning at baseline, and HRQoL and STB at 12 and 24 months. False discovery rate adjustments were used to account for multiple comparisons. RESULTS: At baseline enrollment, STB and HRQoL were not related to HDQLIFE End of Life Planning at 12 or 24 months. Similarly, at baseline, HDQLIFE End of Life Planning demonstrated no association with STB or HRQoL at 12 or 24 months. INTERPRETATION: STB and HRQoL PROs do not significantly affect patient engagement with ACP. Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%

A New Measure for End of Life Planning, Preparation, and Preferences in Huntington Disease: HDQLIFE End of Life Planning

BACKGROUND: Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life. AIM: The purpose of this study was to develop a new measure to evaluate end of life planning. DESIGN: We conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-item measure to evaluate important aspects of end of life planning for Huntington disease. Item response theory and differential item functioning analyses were utilized to examine the psychometric properties of items; exploratory factor analysis was used to establish meaningful subscales. PARTICIPANTS: Participants included 508 individuals with pre-manifest or manifest Huntington disease. RESULTS: Item response theory supported the retention of all 16 items on the huntington disease quality of life ( HDQLIFE ) end of life planning measure. Exploratory factor analysis supported a four-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions (locations, surroundings, etc.) at the time of death. Although a handful of items exhibited some evidence of differential item functioning, these items were retained due to their relevant clinical content. The final 16-item scale includes an overall total score and four subscale scores that reflect the different end of life planning constructs. CONCLUSIONS: The 16-item HDQLIFE end of life planning measure demonstrates adequate psychometric properties; it may be a useful tool for clinicians to clarify patients\u27 preferences about end of life care

Evaluating Cognition in Individuals with Huntington Disease: NeuroQoL Cognitive Functioning Measures

PURPOSE: Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition-Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD. METHODS: Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite scores were developed. We examined the Neuro-QoL measures for reliability, convergent validity, discriminant validity, and known-groups validity. RESULTS: Excellent reliabilities (Cronbach\u27s alphas ≥ 0.94) were found. Convergent validity was supported, with strong relationships between self-reported measures of cognition. Discriminant validity was supported by less robust correlations between self-reported cognition and other constructs. Prodromal participants reported fewer cognitive problems than manifest groups, and early-stage HD participants reported fewer problems than late-stage HD participants. CONCLUSIONS: The Neuro-QoL Cognition measures provide reliable and valid assessments of self-reported cognitive functioning for individuals with HD. Findings support the utility of these measures for assessing self-reported cognition