Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): A national, cross-sectional study.

Background: As novel therapeutic interventions are being developed and tested in the amyotrophic lateral sclerosis (ALS) population, there is a need to better understand the symptoms and issues that have the greatest impact on the lives of individuals with ALS. We aimed to determine the frequency and relative importance of symptoms experienced by adults in a national ALS sample and to identify factors that are associated with the greatest disease burden in this population. Methods: We conducted 15 qualitative interviews of individuals with varied ALS phenotypes and analyzed 732 quotes regarding the symptomatic disease burden of ALS between August 2018 and March 2019. We subsequently conducted a national, cross-sectional study of 497 participants with ALS and ALS variants through the Centers for Disease Control and Prevention's (CDC) National ALS Registry between July 2019 and December 2019. Participants reported on the prevalence and relative importance of 189 symptomatic questions representing 17 symptomatic themes that were previously identified through qualitative interviews. Analysis was performed to determine how age, sex, education, employment, time since onset of symptoms, location of symptom onset, feeding tube status, breathing status and speech status relate to symptom and symptomatic theme prevalence. Findings: Symptomatic themes with the highest prevalence in our sample were an inability to do activities (93.8%), fatigue (92.6%), problems with hands or fingers (87.7%), limitations with mobility or walking (86.7%), and a decreased performance in social situations (85.7%). Participants identified inability to do activities and limitations with mobility or walking as having the greatest overall effect on their lives. Interpretation: Individuals with ALS experience a variety of symptoms that affect their lives. The prevalence and importance of these symptoms differ among the ALS population. The most prevalent and important symptoms offer potential targets for improvements in future therapeutic interventions. Funding: Research funding was provided by ALS Association.

The momentary benefits of positive events for individuals with elevated social anxiety.

Understanding how individuals with varying levels of social anxiety respond to daily positive events is important. Psychological processes that increase positive emotions are being widely used as strategies to not only enhance well-being but also reduce the symptoms and impairment tied to negative emotional dispositions and conditions, including excessive social anxiety. At present, it is unclear whether and how levels of social anxiety impact the psychological benefits derived from momentary positive events. We used ecological momentary assessment to examine the impact of trait social anxiety on momentary changes in emotions, sense of belonging, and social approach versus avoidance motivation following positive events in daily life. Over the course of a week, people with elevated social anxiety experienced greater momentary anxiety and social avoidance motivation and lower momentary happiness and sense of belonging on average. Despite these impairments, individuals with elevated social anxiety experienced greater psychological benefits-in the form of reduced anxiety and motivation to avoid social situations, and an increased sense of belonging-following positive events during the past hour that were rated as particularly intense. This pattern of findings was not specific to social anxiety, with evidence of similar effects for other forms of internalizing psychopathology (general anxiety and depression). These observations detail circumstances in which individuals with social anxiety, and other emotional disturbances, can thrive-creating potentially important targets for intervention. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Dispositional negativity in the wild: Social environment governs momentary emotional experience.

Dispositional negativity-the tendency to experience more frequent or intense negative emotions-is a fundamental dimension of temperament and personality. Elevated levels of dispositional negativity have profound consequences for public health and wealth, drawing the attention of researchers, clinicians, and policymakers. Yet, relatively little is known about the factors that govern the momentary expression of dispositional negativity in the real world. Here, we used smart phone-based experience-sampling to demonstrate that the social environment plays a central role in shaping the moment-by-moment emotional experience of 127 young adults selectively recruited to represent a broad spectrum of dispositional negativity. Results indicate that individuals with a more negative disposition derive much larger emotional benefits from the company of close companions-friends, romantic partners, and family members-and that these benefits reflect heightened feelings of social connection and acceptance. These results set the stage for developing improved interventions and provide new insights into the interaction of emotional traits and situations in the real world, close to clinically and practically important end-points. (PsycINFO Database Record