Individuals' experiences in genetic counseling and predictive testing for familial amyotrophic lateral sclerosis.

As clinical genetic testing in the amyotrophic lateral sclerosis (ALS) diagnostic setting increases, the identification of at-risk family members has also expanded. No practice guidelines specifically for predictive genetic testing exist, and few studies about the psychological impacts of testing in this subgroup have occurred, limiting the ability to tailor recommendations and counseling in this community. We surveyed asymptomatic individuals at risk for inheriting an ALS-associated gene mutation.

A theory-informed, rapid cycle approach to identifying and adapting strategies to promote sustainability: optimizing depression treatment in primary care clinics seeking to sustain collaborative care (The Transform DepCare Study).

Background: Few real-world examples exist of how best to select and adapt implementation strategies that promote sustainability. We used a collaborative care (CC) use case to describe a novel, theory-informed, stakeholder engaged process for operationalizing strategies for sustainability using a behavioral lens.

Methods: Informed by the Dynamic Sustainability Framework, we applied the Behaviour Change Wheel to our prior mixed methods to identify key sustainability behaviors and determinants of sustainability before specifying corresponding intervention functions, behavior change techniques, and implementation strategies that would be acceptable, equitable and promote key tenets of sustainability (i.

Comparison of counseling methods to promote employment for HIV+ ADULTS.

Background: Despite improved health and during a strong job market (pre-COVID-19), a substantial proportion of HIV+ adults remained unemployed. This study sought to provide time-limited counseling to promote employment goals.

Objective: To determine whether behavioral activation (BA) or supportive counseling (SC), would be more effective in promoting vocational goals (full or part-time, paid or volunteer).

Case-control study in ALS using the National ALS Registry: lead and agricultural chemicals are potential risk factors.

: To identify occupational risk factors for ALS using well-characterized participants with ALS (P-ALS), sibling controls (S-controls), and matched population controls (P-controls) within the National ALS Registry. We also compared oxidative stress (OS) biomarkers between groups. : P-ALS were recruited over 4 years.

Returning to work after fatigue treatment and counseling in HIV/AIDS.

Background: Employment rates for people with HIV/AIDS are low, compared to the general population. One widespread barrier is fatigue, accompanied by daytime sleepiness and a lack of stamina. Previous pharmacological studies have demonstrated improvement of fatigue-related symptoms without affecting work-related goal attainmentOBJECTIVE:In this pilot study, we sought to determine whether a pharmacologic-behavioral two-phase combined approach could facilitate returning to work.

Trauma and Growth: Impact of AIDS Activism.

Introduction: Our goal was to assess the long-term impact of AIDS activism of ACT UP/New York on the current adjustment of those who were members during its peak years (1987-1992), including assessment of trauma sequelae as well as posttraumatic growth.

Methods: A 90-minute semistructured interview and 6 validated self-report scales were administered. We relied on purposive and snowball sampling to recruit potential participants.

Depression and wish to die in a multicenter cohort of ALS patients.

Our objective was to determine prevalence of depressive disorders and wish to die at the baseline visit of a longitudinal multisite study of patients with ALS. Structured telephone interviews were conducted with patients diagnosed in past 18 months at 16 U.S.

Seeking a measure of clinically meaningful change in ALS.

We sought to identify a method to assess 'clinically meaningful change' perceived by patients, caregivers and clinical raters in relation to changes in ALSFRS-R scores at three-month intervals. In this five-site study, 81 patient-caregiver dyads were interviewed at baseline, three, and six months to assess changes in ALSFRS-R in relation to perceived occurrence of change, its magnitude and impact. Ratings by patients, caregivers and clinical raters were analyzed over three-month intervals within and between respondent groups.

Japanese and American ALS patient preferences regarding TIV (tracheostomy with invasive ventilation): a cross-national survey.

Substantial disparities in TIV utilization rates among ALS patients have been observed, with rates in Japan far exceeding rates in the United States. Our objective was to elicit national preferences and their determinants. We predicted more Japanese than American patients would desire TIV, as would sicker patients, those already using non-invasive interventions, and those with more positive mood and outlook.

ALS Multicenter Cohort Study of Oxidative Stress (ALS COSMOS): study methodology, recruitment, and baseline demographic and disease characteristics.

Abstract In a multicenter study of newly diagnosed ALS patients without a reported family history of ALS, we are prospectively investigating whether markers of oxidative stress (OS) are associated with disease progression. Methods utilize an extensive structured telephone interview ascertaining environmental, lifestyle, dietary and psychological risk factors associated with OS. Detailed assessments were performed at baseline and at 3-6 month intervals during the ensuing 30 months.

Effect of armodafinil on cognition in patients with HIV/AIDS and fatigue.

Fatigue and cognitive impairment are common in HIV+ adults and may occur independently or be causally linked. This study examined whether alleviation of fatigue with armodafinil in a placebo-controlled double-blind 4-week trial had an effect on cognitive function among those with and without mild neuropsychological impairment at baseline. Sixty-one patients completed a standard battery of neuropsychological tests at study entry and Week 4: A total of 33 were randomized to armodafinil and 28 to placebo.

Tracheostomy with invasive ventilation for ALS patients: neurologists' roles in the US and Japan.

Our objective was to determine whether substantial differences in rates of TIV utilization in the U.S. and Japan are associated with the role of the treating neurologist.

DHEA and cognition in HIV-positive patients with non-major depression.

Background: Dihydroepiandrosterone (DHEA) has been investigated for its potential role in improving cognition in a number of patient populations. Treatment options are limited for HIV-associated neurocognitive disorders.

Objective: The authors tested the effect of DHEA administration on the cognitive functioning of HIV-positive subjects with non-major depression.

Treatment of HIV-related fatigue with armodafinil: a placebo-controlled randomized trial.

Objective: To evaluate the efficacy and safety of armodafinil in the treatment of fatigue in HIV+ patients, and to assess its effect on depressive symptoms and behavior once fatigue remitted.

Method: HIV+ patients with clinically significant fatigue were treated in a placebo-controlled randomized double-blind trial for 4 weeks. Armodafinil responders and placebo non-responders or relapsers were treated openly for a total of 16 weeks with armodafinil.

Modafinil treatment for fatigue in HIV/AIDS: a randomized placebo-controlled study.

Objective: To evaluate the efficacy and safety of modafinil in the treatment of fatigue in patients with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) and to assess effect on depressive symptoms.

Method: Patients who were HIV+ and had clinically significant fatigue (according to the Fatigue Severity Scale [FSS]) were included in a 4-week randomized, placebo-controlled, double-blind trial. This was followed by an additional 8 weeks of open-label treatment for modafinil responders and 12 weeks for placebo nonresponders.

A prospective cohort study of neuropsychological test performance in ALS.

Our objective was to determine the prevalence and predictors of cognitive impairment in ALS, measure differences in survival among impaired and unimpaired patients, and assess changes in neuropsychological test performance over time. Fifty patients were enrolled in a prospective cohort study of neuropsychological performance. ANOVA and chi(2) tests assessed differences in clinical characteristics and neuropsychologic test results; general estimating equations assessed change in test performance; multiple regression determined which variables contributed to cognitive status; and Cox models compared survival.

Modafinil effects on cognitive function in HIV+ patients treated for fatigue: a placebo controlled study.

Both mild cognitive impairment and fatigue are common among people with HIV/AIDS. This study examined the efficacy of modafinil for HIV+ patients who sought treatment for fatigue in a placebo-controlled double-blind 4-week trial. A battery of standard neuropsychological tests was administered at study entry and Week 4, and change in performance was compared for 59 patients receiving modafinil versus 44 patients receiving placebo.

Modafinil treatment of fatigue in patients with ALS: a placebo-controlled study.

Our objective was to determine whether modafinil alleviates fatigue in patients with amyotrophic lateral sclerosis (ALS). A placebo controlled trial with a 3:1 modafinil:placebo randomization in doses up to 300 mg/day for 4 weeks was followed by 8 weeks of open maintenance treatment. The primary endpoint was the Clinical Global Impressions-Improvement Scale.

Provigil (modafinil) plus cognitive behavioral therapy for methamphetamine use in HIV+ gay men: a pilot study.

Objectives: To evaluate the efficacy of modafinil combined with cognitive behavioral therapy (CBT) for treatment of methamphetamine (MA) dependence among HIV+ gay men.

Methods: In a single blind trial, modafinil was administered for 12 weeks, followed by a 4-week placebo phase. CBT was conducted for 18 sessions over the 16-week study.

Depression, distress and positive mood in late-stage cancer: a longitudinal study.

Objectives: To determine whether new-onset clinical depression emerges over time, and whether positive and negative mood levels change among patients with terminal cancer.

Methods: In this two-site study, 58 cancer patients seen at least twice were interviewed monthly until death or study termination. Major measures included the Patient Health Questionnaire-9, Holland System of Beliefs Inventory, and Positive and Negative Affect Schedule.

Neuropsychiatric predictors of return to work in HIV/AIDS.

This study followed 118 HIV+ individuals who had taken steps to return to work to determine facilitators or barriers in returning to work. Over the two-year study period, 52% of the participants obtained employment. Memory function served as the most potent predictor of obtaining employment.