Assessing diagnosis disclosure and concealment in multiple sclerosis: Development and initial validation of the DISCO-MS survey.

BACKGROUND: Individuals with multiple sclerosis (MS) regularly report making strategic decisions about whether to share their diagnosis or keep it a secret; for many, this represents a key stressor. Surprisingly, the impact of disclosure and concealment are understudied in MS and a formal measurement instrument is lacking. We developed the Diagnosis Disclosure and Concealment in MS (DISCO-MS) survey, a self-assessment tool evaluating (1) frequency of concealment behaviors and (2) expected consequences of diagnosis disclosure in persons with MS. METHODS: A systematic mixed-methods process was used for the design and initial validation of the DISCO-MS. Associations of DISCO-MS responses to demographics, clinical variables, and mood were examined in 204 participants with MS. RESULTS: The 39-item DISCO-MS shows good psychometric characteristics. Approximately 25% of respondents conceal their diagnosis, particularly in professional settings. Higher concealment behaviors were associated with younger age, shorter disease duration, and lower physical disability. Nearly 50% of respondents believed that talking openly about their diagnosis might have undesirable professional and interpersonal consequences. Younger age, higher depression, and higher anxiety were associated with greater expectations of negative consequences. CONCLUSION: Development and validation of the DISCO-MS presents the first step toward systematic study of the impact of DISCO on people with MS.

Diagnosis concealment is associated with psychosocial outcomes in persons with multiple sclerosis.

Persons with multiple sclerosis (pwMS) frequently conceal their diagnosis, fearing professional and personal repercussions of disclosing. Associations of concealment behavior and expected consequences of disclosure with psychosocial outcomes were examined in 90 pwMS who completed validated self-report measures of diagnosis concealment, loneliness, social support, and self-efficacy. More frequent concealment was related to worse loneliness (rp = 0.213, p = 0.045) and lower social support (rp = -0.211, p = 0.047), controlling for depression. Higher anticipated negative consequences of disclosure were associated with worse loneliness (rp = 0.263, p = 0.013), lower social support (rp = -0.338, p < 0.001), and lower self-efficacy (rp = -0.350, p < 0.001). Findings hold implications for the development of psychological support strategies addressing concealment/disclosure issues and their psychosocial consequences.

Associations of social network structure with cognition and amygdala volume in multiple sclerosis: An exploratory investigation.

BACKGROUND: Humans are inherently social, biologically programmed to connect with others. Social connections are known to impact mental and physical health. OBJECTIVE: The aim of this study was to test whether social network structure is linked to cognition, mood, fatigue, and regional brain volumes in persons with multiple sclerosis (MS). METHODS: A questionnaire quantifying individual-level social network structure (size, density, effective size, and constraint), a comprehensive battery of neuropsychological tests, and magnetic resonance imaging (MRI) was administered to 51 persons with relapsing-remitting MS. Linear regressions assessed associations of network variables to cognition, depression, fatigue, and structural brain volumes. RESULTS: Higher network density and constraint, indicating stronger connections among network members, were associated with worse language functions. Conversely, larger network effective size, a measure of non-redundant network members, was associated with better language functions. No relationships of network structure to depression or fatigue were found. Larger network size was related to larger amygdala volume. CONCLUSION: Findings suggest that social network structure is linked to language function and amygdala volume in persons with MS. Patients with close-knit networks showed worse language function than those with open networks. Longitudinal studies with larger samples are warranted to evaluate potential causal links between social network structure and MS-related cognitive impairment.

Feasibility trial of a telehealth support group intervention to reduce anxiety in multiple sclerosis.

OBJECTIVE: Anxiety is common among persons with MS (PwMS), but widely accepted treatments are lacking. Group-based interventions delivered via telehealth are an accessible treatment option requiring clinical trial evidence to support feasibility and initial efficacy. We conducted a pilot feasibility trial of an online support group intervention to reduce anxiety in PwMS. METHODS: A non-randomized, parallel arm clinical trial was conducted. A total of 31 PwMS were enrolled: 20 completed a 12-week telehealth-delivered support group intervention and 11 were assigned to a survey-only control group. Primary feasibility outcomes were adherence and completion rates. Primary efficacy outcome was anxiety, secondary outcomes were depression, loneliness, distress, self-efficacy, stress, and quality of life. RESULTS: Twenty-six participants completed the study. Intervention group adherence (75%) and completion (85%) rates were acceptable. Results indicated a medium size between-group effect, suggesting a greater reduction in anxiety in the intervention group compared to the control group [U = 39.50, p = 0.045, r = 0.39]. No group differences in other outcomes were observed. CONCLUSION: A telehealth-delivered support group intervention appears feasible for further study and shows initial efficacy for the reduction of anxiety in PwMS.

"Passion" versus "patience": the effects of valence and arousal on constructive word recognition.

Accumulating evidence suggests that emotional information is often recognised faster than neutral information. Several studies examined the effects of valence and arousal on word recognition, but yielded partially diverging results. Here, we used two alternative versions of a constructive recognition paradigm in which a target word is hidden by a visual mask that gradually disappears, to investigate whether the emotional properties of words influence their speed of recognition. Participants were instructed either to classify the incrementally appearing word as emotional or non-emotional (semantic categorisation task) or to decide whether the appearing letter string is an existing word or not (lexical decision task). Results from both tasks revealed faster recognition times for high- compared to low-arousing words, and for positive compared to negative or neutral words. These findings indicate a recognition advantage for emotionally positive and highly arousing stimuli that persists even when visual word recognition is hampered and participants are encouraged to make more active, semantic inferences to generate the meaning of the emerging word.

Congruent bodily arousal promotes the constructive recognition of emotional words.

Considerable research has shown that bodily states shape affect and cognition. Here, we examined whether transient states of bodily arousal influence the categorization speed of high arousal, low arousal, and neutral words. Participants realized two blocks of a constructive recognition task, once after a cycling session (increased arousal), and once after a relaxation session (reduced arousal). Results revealed overall faster response times for high arousal compared to low arousal words, and for positive compared to negative words. Importantly, low arousal words were categorized significantly faster after the relaxation than after the cycling, suggesting that a decrease in bodily arousal promotes the recognition of stimuli matching one's current arousal state. These findings highlight the importance of the arousal dimension in emotional processing, and suggest the presence of arousal-congruency effects.

It's time to talk about disclosure and concealment in MS.

Deciding when and if to disclose a diagnosis of multiple sclerosis (MS) is complicated and highly stressful for individuals who are already facing many challenges. To date, few research studies have explored specific ways in which this challenge affects people with MS. From a cognitive neuroscience standpoint, the brain is a limited capacity system whereby any allocation of resources has a consequence for overall brain efficiency. To better understand the consequences of allocating resources to concealment behaviors and disclosure decisions, we developed a measurement tool, the DISCO-MS. Here, we discuss insights gained from follow-up focus group discussions with MS patients.

Association of personality traits with physical function, cognition, and mood in multiple sclerosis.

BACKGROUND: Growing literature supports the hypothesis that personality influences health outcomes. Few studies have examined the association between personality traits and key clinical manifestations in persons with multiple sclerosis (pwMS). OBJECTIVE: To investigate whether personality traits are associated with physical function, cognition, and depression in persons with MS. METHODS: In this cross-sectional study, we analyzed data from two cohorts (UPMC, n = 365 and CUIMC, n = 129). Participants completed a personality scale (assessing neuroticism, extraversion, openness, agreeableness, and conscientiousness) and validated surveys measuring physical function, cognition, and depression. Stepwise linear regressions were used to evaluate associations between personality traits and outcome measures. RESULTS: Consistently across cohorts, higher extraversion was associated with better physical function, whereas higher neuroticism was associated with worse depression. In the first cohort, higher extraversion was associated with better cognition, while higher neuroticism was associated with greater risk for memory impairment in the second cohort. Relationships were independent of age and disease duration. CONCLUSION: Findings suggest a potentially protective role of extraversion, and a harmful role of neuroticism, in MS-specific patient-reported clinical outcomes. Increased understanding of the interplay between personality and health outcomes may inform risk models for physical decline, cognitive impairment, and depression in pwMS.

When the body matches the picture: The influence of physiological arousal on subjective familiarity of novel stimuli.

Numerous studies show that bodily states shape affect and cognition. Here, we investigated whether incidental physiological arousal impacted perceived familiarity for novel images depicting real-world scenes. Participants provided familiarity ratings for a series of high- and low-arousal emotional images, once after a cycling session (to increase heart rate) and once after a relaxation session (to reduce heart rate). We observed a novel match-effect between internal (physiological) and external (stimulus) arousal sources, where participants rated highly arousing images as more familiar when bodily arousal was also high. Interestingly, the match-effect was greater in participants that scored low on self-report measures of interoception, suggesting that these individuals are less able to correctly perceive bodily changes, and thus are more likely to confuse their physiological arousal with an external source. Overall, our findings underscore the importance of interactions between the mind, body, and stimulus, especially when it comes to subjective judgments of familiarity. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Social support is linked to mental health, quality of life, and motor function in multiple sclerosis.

OBJECTIVE: To investigate associations of social support to psychological well-being, cognition, and motor functioning in patients with multiple sclerosis (MS). Secondarily, we were interested in exploring sex differences in these relationships, based on a bioevolutionary theoretical justification. METHODS: Social support was assessed in 185 recently diagnosed patients (RADIEMS cohort), and in an independent validation sample (MEMCONNECT cohort, n = 62). Patients also completed a comprehensive neurobehavioral evaluation including measures of mental health, fatigue, quality of life, cognition, and motor function. Correlations tested links between social support and these variables, along with potential gender differences. RESULTS: In both samples, higher social support was associated with better mental health, quality of life, subjective cognitive function, and less fatigue. In the RADIEMS cohort, higher social support was associated with better motor functions, particularly grip strength and gait endurance in women. CONCLUSIONS: These findings highlight associations of social support to overall psychological health and motor functioning in persons with MS, underlining the potential opportunity of evaluating and promoting social engagement in novel treatment strategies.

ASPIRE trial: study protocol for a double-blind randomised controlled trial of aspirin for overheating during exercise in multiple sclerosis.

INTRODUCTION: The many benefits of exercise for persons with multiple sclerosis (MS) are well established, yet patients often refrain from exercise due to overheating and exhaustion. The present randomised controlled trial tests aspirin (acetylsalicylic acid (ASA)) as a convenient method to prevent overheating and improve exercise performance in persons with MS. The effects of ASA are compared with those of acetaminophen (APAP) and placebo. METHODS AND ANALYSIS: Participants are seen for a laboratory maximal exercise test on 3 separate days separated by at least 1 week. At each session, body temperature is measured before oral administration of a standard adult dose (650 mg) of ASA, APAP or placebo. One hour after drug administration, participants perform a maximal ramp test on a cycle ergometer. Primary outcomes are (a) time to exhaustion (that is, time spent cycling to peak exertion) and (b) body temperature change. Crossover analyses will include tests for effects of treatment, period, treatment-period interaction (carryover effect) and sequence. ETHICS AND DISSEMINATION: Ethical approval was granted by the institutional review board at Columbia University Irving Medical Center (reference: AAAS2529). Results of the trial will be published in peer-reviewed scientific journals and presented at national and international conferences. Neurologists, physiatrists, primary care physicians and physiotherapists are important stakeholders and will be targeted during dissemination. Positive trial results have the potential to promote aspirin therapy, an inexpensive and readily available treatment, to reduce overheating and allow more persons with MS to benefit from exercise. TRIAL REGISTRATION NUMBER: NCT03824938.

The body language: The spontaneous influence of congruent bodily arousal on the awareness of emotional words.

Nowadays, the idea of a reciprocal influence of physiological and psychological processes seems to be widely accepted. For instance, current theories of embodied emotion suggest that knowledge about an emotion concept involves simulations of bodily experienced emotional states relevant to the concept. In line with this framework, the present study investigated whether actual levels of physiological arousal interact with the processing of emotional words. Participants performed 2 blocks of an attentional blink task, once after a cycling session (increased arousal) and once after a relaxation session (reduced arousal). Concretely, participants were instructed to detect and report 2 target words (T1 and T2) presented among a series of nonword distractors. T1 and T2 were either neutral, high arousal, or low arousal words. Results revealed that increased physiological arousal led to improved reports of high arousal T2 words, whereas reduced physiological arousal led to improved reports of low arousal T2 words. Neutral T2 remained unaffected by the arousing conditions. These findings emphasize that actual levels of physiological arousal modulate the cognitive access to arousal (in-)congruent emotional concepts and suggest a direct grounding of emotion knowledge in our bodily systems of arousal.