Validation of self-report depression rating scales in Huntington's disease

2009 ◽  
Vol 25 (1) ◽  
pp. 91-96 ◽  
Author(s):  
Jennifer De Souza ◽  
Lisa A. Jones ◽  
Hugh Rickards
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Rating Scales ◽  
Self Report

The Impact of Anosognosia on Clinical and Patient-Reported Assessments of Psychiatric Symptoms in Huntington’s Disease

2020 ◽  
Vol 9 (3) ◽  
pp. 291-302
Author(s):  
David Isaacs ◽  
Jessie S. Gibson ◽  
Jeffrey Stovall ◽  
Daniel O. Claassen
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Discriminant Validity ◽  
Rating Scales ◽  
Rating Scale ◽  
Psychiatric Symptoms ◽  
Self Report ◽  
Depression And Anxiety ◽  
Patient Reported ◽  
The Impact

Background: Psychiatric symptoms are widely prevalent in Huntington’s disease (HD) and exert greater impact on quality of life than motor manifestations. Despite this, psychiatric symptoms are frequently underrecognized and undertreated. Lack of awareness, or anosognosia, has been observed at all stages of HD and may contribute to diminished patient self-reporting of psychiatric symptoms. Objective: We sought to evaluate the impact of anosognosia on performance of commonly used clinical rating scales for psychiatric manifestations of HD. Methods: We recruited 50 HD patients to undergo a formal psychiatrist evaluation, the Problem Behavior Assessment-Short Form (PBA-s), and validated self-report rating scales for depression, anxiety, and anger. Motor impairment, cognitive function, and total functional capacity were assessed as part of clinical exam. Patient awareness of motor, cognitive, emotional, and functional capacities was quantified using the Anosognosia Rating Scale. Convergent validity, discriminant validity, classification accuracy, and anosognosia effect was determined for each psychiatric symptom rating scale. Results: Anosognosia was identified in one-third of patients, and these patients underrated the severity of depression and anxiety when completing self-report instruments. Anosognosia did not clearly influence self-reported anger, but this result may have been confounded by the sub-optimal discriminant validity of anger rating scales. Conclusion: Anosognosia undermines reliability of self-reported depression and anxiety in HD. Self-report rating scales for depression and anxiety may have a role in screening, but results must be corroborated by provider and caregiver input when anosognosia is present. HD clinical trials utilizing patient-reported outcomes as study endpoints should routinely evaluate participants for anosognosia.

F57 Psychiatric symptoms in huntington’s disease: correlations between interview and self-report measures in the capit-hd2 beta-testing study

2018 ◽  
Author(s):  
Isobel McMillan ◽  
Duncan McLauchlan ◽  
Monica Busse ◽  
Anne-Catherine Bachoud-Lévi ◽  
Ralf Reilmann ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Psychiatric Symptoms ◽  
Self Report ◽  
Beta Testing

scholarly journals Fiberoptic endoscopic evaluation of swallowing in early-to-advanced stage Huntington’s disease

2020 ◽  
Vol 10 (1) ◽  
Author(s):  
Antonio Schindler ◽  
Nicole Pizzorni ◽  
Jenny Sassone ◽  
Lorenzo Nanetti ◽  
Anna Castaldo ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Neurodegenerative Disorder ◽  
Early Stage ◽  
Clinical Care ◽  
Self Report ◽  
Advanced Stage ◽  
Endoscopic Evaluation ◽  
Silent Aspiration ◽  
Scale Scores

Abstract Huntington's disease (HD) is a neurodegenerative disorder characterized by motor disturbances, cognitive decline, and behaviour changes. A well-recognized feature of advanced HD is dysphagia, which leads to malnutrition and aspiration pneumonia, the latter being the primary cause of death in HD. Previous studies have underscored the importance of dysphagia in HD patients with moderate-to-advanced stage disease, but it is unclear whether dysphagia affects patients already at an early stage of disease and whether genetic or clinical factors can predict its severity. We performed fiberoptic endoscopic evaluation of swallowing (FEES) in 61 patients with various stages of HD. Dysphagia was found in 35% of early-stage, 94% of moderate-stage, and 100% of advanced-stage HD. Silent aspiration was found in 7.7% of early-stage, 11.8% of moderate-stage, and 27.8% of advanced-stage HD. A strong correlation was observed between disease progression and dysphagia severity: worse dysphagia was associated with worsening of motor symptoms. Dysphagia severity as assessed by FEES correlated with Huntington’s Disease Dysphagia Scale scores (a self-report questionnaire specific for evaluating swallowing in HD). The present findings add to our understanding of dysphagia onset and progression in HD. A better understanding of dysphagia onset and progression in HD may inform guidelines for standard clinical care in dysphagia, its recognition, and management.

Rating scales for cognition in Huntington's disease: Critique and recommendations

2017 ◽  
Vol 33 (2) ◽  
pp. 187-195 ◽  
Author(s):  
Tiago A. Mestre ◽  
Anne-Catherine Bachoud-Lévi ◽  
Johan Marinus ◽  
Julie C. Stout ◽  
Jane S. Paulsen ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Rating Scales

Response to letter by Saenz‐Farret et al. on “Rating scales for behavioral symptoms in Huntington's disease: Critique and recommendations”

2017 ◽  
Vol 32 (3) ◽  
pp. 482-482
Author(s):  
Tiago A. Mestre ◽  
Erik van Duijn ◽  
Aileen M. Davis ◽  
Anne‐Catherine Bachoud‐Lévi ◽  
Monica Busse ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Rating Scales ◽  
Behavioral Symptoms

Dysphagia characteristics in Huntington’s disease patients: insights from the Fiberoptic Endoscopic Evaluation of Swallowing and the Swallowing Disturbances Questionnaire

CNS Spectrums ◽  
2018 ◽  
Vol 24 (04) ◽  
pp. 413-418 ◽  
Author(s):  
Yael Manor ◽  
Yael Oestreicher-Kedem ◽  
Alona Gad ◽  
Jennifer Zitser ◽  
Achinoam Faust-Socher ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Rating Scale ◽  
Oropharyngeal Dysphagia ◽  
Case Series ◽  
Solid Food ◽  
Self Report ◽  
Endoscopic Evaluation ◽  
Retrospective Case ◽  
Tertiary Referral Center

BackgroundHuntington’s disease (HD) is a neurodegenerative disease characterized by increasing dysphagia as the disease progresses. Specific characteristics of the HD dysphagia are not well defined.ObjectiveTo characterize the swallowing disturbances of HD patients, to evaluate the feasibility of Fiberoptic Endoscopic Evaluation of Swallowing (FEES) in assessing dysphagia in HD patients, and to discern the relation between FEES findings and patients’ self-report on dysphagia symptoms and swallowing related quality of life (SWAL-QOL).MethodA retrospective case series in a tertiary referral center. All recruited HD patients underwent Bed Side Swallowing Evaluation (BSE), FEES, the Unified Huntington’s Disease Rating Scale (UHDRS), and the Montreal Cognitive Assessment (MoCA). All completed the Swallowing Disturbances Questionnaire (SDQ) and the SWAL-QOL questionnaire.ResultsFourteen HD patients were recruited. All were able to complete the FEES study. The FEES demonstrated delayed swallowing reflex, solid food residues, and pre/post swallowing spillage in most patients (50%, 53.5%, 83.3%, and 87.5%, respectively). The mean SDQ score was 13.2. Significant correlations were found between the SWAL-QOL fear of eating score; the SDQ oral, pharyngeal, and total scores; and the FEES parameters of pureed and solid food bolus flow time. Significant correlations were also found between the total UHDRS score, the volitional cough score, and the SWAL-QOL disease burden score.ConclusionHD patients exhibit prominent unique oropharyngeal dysphagia features that may serve as a marker of disease progression. The FEES and the SDQ are valuable tools for detecting these features in HD patients with swallowing disturbance.

A Comparison of Self-Report and Caregiver Assessment of Depression, Apathy, and Irritability in Huntington’s Disease

2005 ◽  
Vol 17 (3) ◽  
pp. 378-383 ◽  
Author(s):  
Anjan Chatterjee ◽  
Karen E. Anderson ◽  
Carol B. Moskowitz ◽  
Willard A. Hauser ◽  
Karen S. Marder
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Self Report

Risk-Taking Behaviors in Huntington’s Disease

2020 ◽  
Vol 9 (4) ◽  
pp. 359-369
Author(s):  
Katherine E. McDonell ◽  
Abagail E. Ciriegio ◽  
Anna C. Pfalzer ◽  
Lisa Hale ◽  
Shuhei Shiino ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Risk Taking ◽  
Medical Center ◽  
Risky Behaviors ◽  
Self Report ◽  
Compulsive Behaviors ◽  
Male Patients ◽  
Highly Correlated ◽  
Risk Taking Behaviors

Background: Risky behaviors are common in Huntington’s disease (HD) and can lead to significant adverse consequences. However, the prevalence and scope of these symptoms have not been studied systematically, and no empirically validated measures are available to screen for them. Objective: To test a novel screening tool designed to assess risk-taking behaviors in HD. Methods: We administered the Risk Behavior Questionnaire (RBQ-HD) to HD patients and caregivers at Vanderbilt University Medical Center between 2018-2019. Patients completed the questionnaire based on self-report; caregivers provided collateral reports. Clinical and demographic information were obtained from the electronic medical record. Results: 60 patients and 60 caregivers completed the RBQ-HD. 80% of patients (n = 48) and 91.7% of caregivers (n = 60) reported at least one risky behavior. Adverse social behaviors, impulsive/compulsive behaviors, and reckless driving were the most common behavioral domains reported. Male patients were more likely to report risky behaviors than females (92.3% vs. 70.6%, p = 0.04). The number of risky behaviors reported by patients and caregivers was negatively correlated with patient age (r = –0.32, p = 0.01; r = –0.47, p = 0.0001, respectively). Patient and caregiver reports were highly correlated in matched pairs (n = 30; r = 0.63, p = 0.0002). Conclusion: These findings emphasize that risky behaviors are highly prevalent in HD and can be effectively identified through the use of a novel screening measure. We hypothesize that early pathological involvement of frontostriatal and mesolimbic networks may be important factors in the development of these behaviors.

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