An Exploratory Pilot Study of Neuropsychological Performance in Two Huntington Disease Centers of Excellence Clinics.

OBJECTIVES: To describe the characteristics of patients receiving a clinical referral for neuropsychological evaluation in two Huntington's Disease Society of America Centers of Excellence (HDSA COE). In this exploratory pilot study, we used an empirically supported clinical neuropsychological battery to assess differences in cognitive performance between premanifest and manifest HD patient groups (compared with each other and normative expectations). METHOD: Clinical data from 76 adult genetically confirmed patients referred for neuropsychological evaluations was retrospectively collected from two HDSA COEs. ANOVA and Chi-square tests were used to compare variables between pre-manifest (n = 14) and manifest (n = 62) groups for demographic, cognitive, neuropsychiatric, and disease severity variables. RESULTS: Our clinics serviced a disproportionate number of motor manifest patients. Six measures were excluded from analyses due to infrequent administration. The full WAIS-IV Digit Span was disproportionately administered to the manifest group. The premanifest group showed stronger cognitive performance with effect sizes in the large range on subtests of the WAIS-IV Digit Span, HVLT-R, SDMT, and verbal fluency. CONCLUSIONS: This is the first study to assess an empirically supported neuropsychological research battery in a clinical setting with a relatively large sample size given the rarity of HD. The battery adequately captured areas of impairment across the disease spectrum. Application of the current battery with larger premanifest samples is warranted.

Frequency and Pathophysiology of Apathy in Huntington Disease: A Systematic Review and Meta-Analysis.

OBJECTIVE: Apathy is a common behavioral symptom of Huntington disease (HD). This systematic review describes current evidence on the pathophysiology, assessment, and frequency of apathy in HD. METHODS: This systematic review was conducted in accordance with PRISMA guidelines. Using a comprehensive search strategy, the investigators searched the MEDLINE, Embase, and PsycINFO databases. All studies that evaluated apathy in HD patients with a valid scale and reported apathy frequency or scores were included. Apathy scores were analyzed by mean or standardized mean differences in accordance with Cochrane guidelines. RESULTS: A total of 1,085 records were screened and 80 studies were ultimately included. The Problem Behaviors Assessment-Short was the most frequently used apathy assessment tool. Apathy frequency generally ranged from 10%-33% in premanifest HD to 24%-76% in manifest HD. A meta-analysis of 5,311 records of patients with premanifest HD showed significantly higher apathy scores, with a standardized mean difference of 0.41 (CI=0.29-0.52; p<0.001). A comparison of 1,247 patients showed significantly higher apathy scores in manifest than premanifest HD, with a mean difference of 1.87 (CI=1.48-2.26; p<0.001). There was evidence of involvement of various cortical and subcortical brain regions in HD patients with apathy. CONCLUSIONS: Apathy was more frequent among individuals with premanifest HD compared with those in a control group and among individuals with manifest HD compared with those with premanifest HD. Considering the complexity and unique pattern of development in neurodegenerative disease, further studies are required to explore the pathophysiology of apathy in HD.

Current status of inclusion of black participants in neuropsychological studies: A scoping review and call to action.

In recognition that insufficient diversity in research impedes the generalizability of findings and negatively impacts clinical outcomes, the 1993 National Institutes of Health (NIH) Revitalization Act required NIH-funded clinical trials to include and assess outcomes for women and minority participants. Since that time, the American Psychological Association (APA) and the American Academy of Clinical Neuropsychology (AACN) have also acknowledged the reporting of this information as an essential element of research, and they have established similar aspirational goals. Nevertheless, Black communities remain disproportionately underrepresented in neuropsychology research. The objective of this study was to investigate current levels of inclusion and reporting of Black research participation in neuropsychological studies.Publications from high impact neuropsychology journals between 2019-2020 were selected via established methodologies. Studies were analyzed to determine the rates of demographic inclusion and reporting of minority, particularly Black, participants.A total of 1,764 articles were reviewed across seven neuropsychology journals. Of the 653 studies not excluded for other reasons, 43% neglected to include sufficient information about participants' race/ethnicity. Of the subset of eligible studies that did include racial/ethnic demographic information (n = 349), only 61% included any Black participants at all. Only 34.1% of them included enough Black participants equal to or greater than the proportion of Black individuals within the United States.Setting a standard of routinely reporting and analytically reflecting on demographic information is necessary to make valid inferences regarding disease sequelae, treatment, and public health strategies. The authors offer specific recommendations to improve the inclusion and reporting of Black research participation, ensure compliance with established policies, and improve the quality of neuropsychological research.

Cancer patient perspectives regarding preparedness for end-of-life care: A qualitative study.

PURPOSE: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of "preparedness," however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development. DESIGN: This qualitative study examined patient perspectives regarding preparedness for EOL care. PARTICIPANTS AND METHODS: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data. FINDINGS: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning). CONCLUSIONS: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.

The Offender Job Search Self-Efficacy Scale: Development and initial validation.

The purpose of this study was to develop the Offender Job Search Self-Efficacy Scale (OFJSSE) for the specific job search needs of the criminal justice population. Participants were 249 male inmates within 2 years of release from a state correctional facility in the southern region of the United States who identified mostly as Caucasian (56.2%), single (62.2%), working-class (45.4%) men with a mean age of 36.27 years (SD = 10.38). Initial validation data are described, including results of an exploratory factor analysis. Results indicated that the OFJSSE presents excellent reliability (α = .95) as well as good convergent and discriminant validity by having a strong, positive correlation, r = .73, p < .01, with another job search scale and having a negative correlation, r = -.19, p = .01, with a scale measuring a different construct (i.e., criminal thinking). Implications of the findings as well as limitations and future directions are discussed. (PsycINFO Database Record (c) 2018 APA, all rights reserved).