Self-reported Fatigue Research Articles

Two-year impact of COVID-19: Longitudinal MRI brain changes and neuropsychiatric trajectories.

Up to 10% of SARS-CoV-2 infected individuals suffer from post-COVID-19 condition, marked by fatigue and cognitive dysfunction as major symptoms. Longitudinal studies on neuropsychological and clinical trajectories and related brain changes are scarce. Here, we aimed to examine their evolution up to 2 years post-infection. In a multi-center, longitudinal study of 79 post-COVID patients (mean age 46, 48 female) with persistent symptoms and 21 age- and sex-matched never-infected, healthy controls (mean age 42, eight female), we analyzed neuropsychological performance, self-reported outcomes and associated neuroimaging alterations of resting-state functional and structural magnetic resonance imaging data 23 months post-infection. In post-COVID patients 23 months after SARS-CoV-2 infection we observed (1) that fatigue severity had reduced but still remained present in most patients, (2) widespread brain changes involving the brainstem, the pre- and postcentral gyrus and the limbic olfactory network, (3) a weakening of self-reported fatigue and its cerebral associations. Notably, findings of brain aberrations were more pronounced in hospitalized patients. Our findings indicate that complex brain adaptations take place up to 2 years following SARS-CoV-2 infection. Some regions manifest enduring abnormalities while others undergo restitution. The attenuation of radio-clinical associations suggests a compensatory function for these regions, pointing to non-brain intrinsic factors to sustain persistent fatigue.

A Comparison of Patient Self-Reported Fatigue in the FRAIL Scale With a Validated Fatigue Measure.

The FRAIL scale is a self-administered tool used to screen for frailty in clinical, community and long-term nursing settings. Patient's self-reporting of fatigue in the FRAIL scale may raise concerns of subjectivity and accuracy in frailty assessment. To assess the performance of the patient-reported fatigue measure in the FRAIL scale in comparison to a validated fatigue measure, the Fatigue Severity Scale (FSS). We conducted a cross-sectional study involving interviews and medical records review. Participants were 55 years and older seen at an ambulatory geriatric osteoporosis clinic. Participants were administered the FRAIL scale and the FSS over the phone or in person. Patient self-reported fatigue was derived from the first item (Are you fatigued?) on the FRAIL scale while the FSS provided a validated fatigue measure. Clinical and demographic data were obtained by review of medical records. Sensitivity, specificity, negative and positive predictive values, and AUC were estimated for patient self-reported fatigue from the FRAIL scale using the FSS as the gold standard. Logistic regression analysis was used to investigate independent associations between the items on the FRAIL scale and fatigue assessed by the FSS, adjusting for demographic and clinical characteristics. We interviewed 126 participants, mean age was 77.2 ± 8.5 years, 91.3% (116) were female and 69.3% (88) were Caucasian/White. The prevalence of fatigue assessed by the FSS and the FRAIL scale were 24% and 34.6%, respectively. The sensitivity, specificity, positive predictive value, and negative predictive value of patient-reported fatigue were 0.67, 0.75, 0.45, and 0.88, respectively. The AUC was 0.71. Depression (OR = 2.41, 95% CI = 1.14-10.25) and patient self-reported fatigue (OR = 4.74, 95% CI = 1.74-12.9) were significantly associated with FSS fatigue measure. Patient-reported fatigue largely reflects validated measure of fatigue. Physicians should therefore be encouraged to use the FRAIL scale to assess frailty.

Coping is a moderator of relationships between cognitive fatigue and cognitive variability in multiple sclerosis.

Mean levels of cognitive functioning typically do not show an association with self-reported cognitive fatigue in persons with multiple sclerosis (PwMS), but some studies indicate that cognitive variability has an association with cognitive fatigue. Additionally, coping has been shown to be a powerful moderator of some outcomes in multiple sclerosis (MS). To date, however, coping has not been considered as a possible moderator of the relationship between cognitive fatigue and cognitive variability in MS. The current study examined this relationship. We examined 52 PwMS. All participants were administered the Fatigue Impact Scale, the Coping Orientation to Problems Experienced Questionnaire, and cognitive tests. Indices of variability for memory and attention/executive functioning tests were used as outcome variables. Avoidant coping, active coping, and composite coping indices were used as moderators. The interaction analyses for the avoidant coping and composite coping indices were significant and accounted for 8 and 11% of the attention/executive functioning variability outcome, respectively. The interactions revealed that at low levels of cognitive fatigue, attention/executive functioning variability was comparable between the low and high avoidant and composite coping groups. However, at high levels of cognitive fatigue, PwMS using lower levels of avoidant coping (less maladaptive coping) showed less variable attention/executive functioning scores compared with those using higher levels of avoidant coping. We found a similar pattern for the composite coping groups. At high levels of cognitive fatigue, PwMS using adaptive coping showed less attention/executive functioning variability. These findings should be considered in the context of treatment implications.

DOP008 High clinical and endoscopic remission rate with Vedolizumab in early CD patients: the 2nd interim analysis from a prospective multicenter interventional Study (EARLY CD)

Abstract Background Early treatment with advanced therapy prior to the development of complications such as stricture and fistula, is associated with better disease prognosis in patients (pts) with Crohn’s disease (CD). This study (EARLY CD) aims to evaluate the efficacy and safety of Vedolizumab (VDZ) as first line therapy in pts with early CD. Methods EARLY CD is a prospective, single-arm, multicenter, interventional study (ChiCTR2200063233). Target enrollment was 172 pts and all pts will receive up to 50 weeks of VDZ treatment with dose optimization (additional dose at week 10 if no clinical response, and switch to Q4W if secondary loss of response at maintenance). Main inclusion criteria for early CD are disease duration less than 18 months, no previous use of immunosuppressive agents and advanced treatment, no complications such as fistula or stricture (except for inactive perianal fistula). Primary endpoint was clinical and endoscopic remission at week 52, together with several secondary endpoints including clinical and endoscopic response, transmural healing assessed by MRE, and improvements in both PRO and QoL. This second interim analysis was conducted when all 172 enrollments were completed. Results 172 pts were recruited with a median follow-up of 7.1 months (IQR 3.3-11.7). Mean age was 30.9 years, 73.8% were male. Mean CDAI score at baseline was 245.97 and SES-CD score was 9.7 (table). Clinical and endoscopic remission rates reached 83.8% and 48.7% at week 14, with further increase to 92.1% and 71.1% at week 52 (figure). Early clinical improvement was observed, with both abdominal pain score (APS) and loose stool frequency score (LSFS) started to decline from week 1, APS decreased by 50.6% (from 44.9 to 22.2), LSFS decreased by 56.1% (from 32.5 to 14.26). From week 1 to week 52, IBDQ improved from 157.8 to 185.9, self-rated health status EQ visual analogue scale increased from 72.3 to 85.4, and self-reported fatigue score assessed by FACIT improved from 38.1 to 43.9. Twenty pts have completed MRE evaluation both at baseline and week 52, with MaRIA score showing a decline from 23.9 to 20.3. Adverse events occurred among 20 pts (11.6%), including exacerbation of perianal disease that required surgical drainage (n=6), arthralgia (n=4), infection (n=7), GI bleeding (n=1), acute appendicitis (n=1), and elevated transaminase (n=1). Conclusion This is the first study worldwide to prospectively evaluate the efficacy of VDZ as first-line therapy among bio-naïve pts with early CD. Interim analysis showed promising results including high clinical and endoscopic remission rates through week 52, together with early PRO response and improvement in quality of life.

Exploring the Feasibility of Self-Reported Cognitive Fatigue in Children With and Without Traumatic Brain Injury After Functional Experimental Tasks

Purpose: The overall purpose of this study was to explore the feasibility of collecting subjective measures of cognitive fatigue in children with and without traumatic brain injury (TBI) before and after functional, experimental tasks. Method: Seven participants (i.e., two children with TBI and five children without TBI) completed the experimental tasks for this study. Demographics, injury information, and executive functioning were collected through an online, parent-reported survey. Self-reported ratings of cognitive fatigue were collected from children through an online survey and before and after four in-person experimental tasks, including two high-demand and two low-demand tasks. Results: All participants successfully completed the experimental tasks including self-rating cognitive fatigue before beginning the experiment and after each experimental task. While cognitive fatigue patterns were inconsistent across participants, changes in self-ratings were observed, demonstrating the feasibility of the tasks and measure for children with and without TBI. Conclusion: The findings from this preliminary study of a small sample support the feasibility of and continued research on self-ratings to better understand, assess, and manage cognitive fatigue after childhood TBI.

Association of real life postural transitions kinematics with fatigue in neurodegenerative and immune diseases

Fatigue is prevalent in immune-mediated inflammatory and neurodegenerative diseases, yet its assessment relies largely on patient-reported outcomes, which capture perception but not fluctuations over time. Wearable sensors, like inertial measurement units (IMUs), offer a way to monitor daily activities and evaluate functional capacity. This study investigates the relationship between sit-to-stand and stand-to-sit transitions and self-reported physical and mental fatigue in participants with Parkinson’s, Huntington’s, rheumatoid arthritis, systemic lupus erythematosus, primary Sjögren’s syndrome and inflammatory bowel disease. Over 4 weeks, participants wore an IMU and reported fatigue levels four times daily. Using mixed-effects models, associations were identified between fatigue and specific kinematic features, such as 5th and 95th percentiles of sit-to-stand performance, suggesting that fatigue alters the control and effort of movement. These kinematic features show promise as indicators for fatigue in these patient populations.

Person-centered support for patients with a pituitary tumor following surgery.

To evaluate whether a person-centered care practice following surgery for pituitary tumors increased psychological well-being. Secondary aims were to study whether person-centered care would lead to better health status, less fatigue, and better self-efficacy. The study is a prospective, single center study using a quasi-experimental design to evaluate the effect of a 12-month person-centered practice by means of a name-given nurse care manager, an interdisciplinary team, and peer-support against usual care. All patients (≥ 18 years) with a benign pituitary tumor and planned for endoscopic transsphenoidal surgery were consecutively invited to participate. Psychological well-being, self-reported health, fatigue, and self-efficacy were assessed before surgery, at discharge, and at 3-6 and 12 months after surgery. In total, 82 patients in the intervention group and 66 patients in the control group were included. Psychological well-being improved 12 months following surgery in both groups to comparable levels. The intervention group had greater improvement in anxiety compared to the control group (P = 0.02). No differences were seen between groups in self-reported health status, fatigue, or self-efficacy. Patients in the intervention group with other types of pituitary tumors than non-functioning pituitary adenomas showed greater improvement in psychological well-being than the control group. The intervention did not result in major advantages in terms of health or psychological well-being. The study does, however, suggest that the intervention may reduce anxiety 12 months after surgery and that certain subgroups of patients may benefit more from a structured person-centered practice following pituitary surgery.

The Functional Assessment of Chronic Illness Therapy-Fatigue Measure: Cross-Cultural Validation of an Arabic Version for Older Jordanians

Background: Numerous national and international nursing research studies have used the 13-item Chronic Illness Therapy Functional Assessment Chronic Illness Therapy (fatigue) (FACIT‐F) scale to measure the level of self-reported fatigue among the elderly population. Nonetheless, a culturally adapted Arabic version of the scale of the same quality was required to boost its use in Arabic-speaking nations. This study cross-culturally validated the Arabic version of the FACIT-F scale and tested its validity and reliability in an Arabic-speaking population. Materials and Methods: We conducted the study among an elderly Jordanian population using a methodological cross-sectional approach. Using a cluster random selection technique, we randomly selected 250 older adults from a larger pool. We evaluated the scale’s validity, internal consistency, and acceptability. We analyzed the construct validity using both confirmatory and exploratory factor analysis. Results: The Arabic version of FACIT-F was proven to be acceptable for the one-factor model in the elderly Jordanian population. Cronbach’s alpha coefficient for the Arabic FACIT-F was 0.95, which indicated good reliability. Evidence suggested that construct validity for the FACIT-F was generally quite acceptable. Conclusions: With regard to evaluating fatigue in an older Jordanian population, the Arabic translations of the FACIT-F have been shown to be reliable and valid.

A protocol for a feasibility study of Cognitive Bias Modification training (IVY) countering fatigue in people with breast cancer

BackgroundCancer-related fatigue (CRF) is the most prevalent, distressing, and quality of life disturbing symptom during and after cancer treatment for many cancer types including breast cancer. The experience and burden of this symptom can induce a cognitive bias towards fatigue or a fatigue-related self-image, which can further increase the fatigue symptoms and related behaviour. For this, a Cognitive Bias Modification (CBM) eHealth app (IVY) has been developed. The app aims to counter the fatigue-related self-image and to modify it towards vitality, which might translate to less experienced fatigue and more experienced vitality. This study aims to evaluate the feasibility of the IVY CBM training and the research design of a wait-list control trial. If feasibility is judged sufficient, the effectiveness of the CBM app will also be analyzed on (1) underlying mechanisms (cognitive fatigue bias), (2) symptom fatigue (self-reported fatigue and vitality), and (3) related behaviours (avoidance and all-or-nothing behaviour).MethodsThis feasibility study addresses individuals being treated for breast cancer receiving (neo)adjuvant treatment or metastatic care. The number of target participants is 120 (60 (neo)adjuvant, and 60 metastatic) patients. Both groups will be randomized with 30 people in the IVY treatment group and 30 people in the delayed treatment control group. All participants will receive the training via the IVY app, in which participants categorize words related to vitality with words related to ‘I’ and words related to fatigue with words related to ‘other’. If feasibility is judged sufficient, the effects of the training will be explored on 3 levels: (1) self-identity bias, which will be measured with a short computer task based on the Implicit Association Test (IAT), (2) avoidance and all-or-nothing behaviour, and (3) fatigue and vitality levels, which will all be measured with questionnaires.DiscussionThis study aims to evaluate the feasibility of a larger-scale multi-centre Randomized Controlled Trial (RCT) to investigate a novel eHealth application and, if possible, to give indications on the effectiveness of this intervention to counter fatigue in individuals with breast cancer. Using the IVY CBM app requires very little effort, both in time and cognitive load, which could be especially beneficial for fatigue symptoms.Trial registrationRegistered at the Open Science Framework (OSF; https://osf.io/e85g7/) on October 20, 2023.

Improving real-world evaluation of patient- and physician-reported tolerability: niraparib for recurrent ovarian cancer (NiQoLe).

Maintenance niraparib at an individualized starting dose (ISD) is established in platinum-sensitive recurrent ovarian cancer (PSROC). However, patients' perspectives on the burden of prolonged maintenance therapy have not been reported in prospective trials or routine practice. In the real-life multicenter NiQoLe study, patients with PSROC received ISD maintenance niraparib. The primary objective was to describe physician-reported adverse events (AEs) leading to treatment modification during the first 3 months. Secondary endpoints included patient-reported outcomes (symptomatic AEs using PRO-CTCAE, self-reported fatigue and impact on daily activities/function using FACT-F) collected remotely weekly using a specifically designed electronic device. Most (80%) of 139 treated patients (median age 70 years) began niraparib at 200 mg/day. Median treatment duration was 5.7 (range 0.2-21.4) months. During the first 3 months, 86 patients (62%) required treatment modification (median 27 days to modification). Physician-reported grade ≥3 niraparib-related AEs occurred in 34 patients (24%); 68 patients (49%) had treatment modification for AEs, predominantly thrombocytopenia. The most frequent patient-reported AEs (PRO-CTCAE) were fatigue, insomnia, constipation, and dry mouth. Self-reported AEs were severe in 66% of patients. At baseline, 33% of patients reported severe fatigue (FACT-F), which generally persisted during niraparib. Physicians systematically underestimated major patient-reported symptoms. In routine practice, dose modification was often required during the first 3 months despite individualized dosing. Physicians underestimated the burden of fatigue and symptomatic AEs. Digital self-reporting of AEs is feasible, provides patient-centered information complementing physician-reported AEs, and allows fuller appreciation of toxicity in real-world studies. NCT03752216.

Measuring Frailty in Systemic Lupus Erythematosus.

Recent research has explored frailty in systemic lupus erythematosus (SLE) using multiple measures. We examined the agreement among frailty measures and the association of each with cross-sectional and longitudinal health outcomes. We used data from the California Lupus Epidemiology Study (CLUES) to examine the following measures of frailty: Systemic Lupus International Collaborating Clinics (SLICC) Frailty Index (SLICC-FI), Short Physical Performance Battery (SPPB), and Fatigue, Resistance, Ambulation, Illness, and Loss of Weight (FRAIL) scale questionnaire. PROMIS Physical Function 10a (PF) was tested as a proxy measure of frailty. Agreement between frailty classifications by each measure was assessed. Cross-sectional associations of frailty classifications with hospitalization, valued life activities disability, cognitive impairment, 6-minute walk test distance, self-reported disease damage, fatigue, and depressive symptoms were assessed with logistic and linear regression analyses. Associations with hospitalization, disease damage increase, and disability increase over the subsequent 3 years were assessed Cox proportional hazards analyses. Percentages of participants identified as frail varied among the measures, from 10.8% to 45.9%. Agreement among classifications ranged from slight to substantial (κ from 0.17 to 0.63). Most of the frailty measures were associated with both cross-sectional and longitudinal health outcomes, with the notable exception of the SPPB. SLICC-FI had the most consistent association with outcomes, followed by FRAIL and PF. Multiple measures of frailty appear to identify the risk of poor health outcomes. The intended use, as well as the simplicity and practicality of implementing the measure, may be the most important considerations in choosing a frailty measure.

Daily fluctuations in adolescents' sleep predict next-day attention, sleepiness, and fatigue: an ecological momentary assessment study over 28 days.

Current understanding of the associations between adolescents' daily sleep and daytime alertness and fatigue under naturalistically occurring restricted (school) and unrestricted (vacation) sleep opportunities is limited. A convenience sample of adolescents (n = 205; 54.1% females, Mage ± SD = 16.9 ± 0.87 years) completed daily measures of sleep, alertness, and fatigue over 28 days (2 weeks during school, and the subsequent 2-week vacation). Actigraphy and sleep diary total sleep time (TST) and sleep efficiency (SE) were measured. Participants self-reported sleepiness and fatigue every morning and afternoon, and completed a tablet-based, 3.2-min psychomotor vigilance task (PVT) every afternoon. Cross-lagged multilevel models tested daily TST and SE as predictors of next-day subjective sleepiness/fatigue and PVT performance. Between- (i.e., differences between individuals) and within-person associations (i.e., whether nights with higher-than-individual's-average TST/SE, predict next-day outcomes) were tested simultaneously. Covariates included previous-day outcome, day of the week, study day (1-28), school/vacation, chronotype, and sociodemographic variables. Within-persons, higher-than-average TST and SE (both actigraphy and diary) predicted better next-day PVT performance (all p ≤ .006), and lower subjective sleepiness and fatigue the following morning and afternoon (all p ≤ .032). Between-persons, adolescents with higher overall diary SE had lower morning subjective sleepiness (p < .001) and fewer PVT false starts in the afternoon (p = 0.02). Nights with longer- and higher-than-average sleep efficiency (both actigraphy and diary) predicted better daytime alertness and fatigue, both when examined objectively via sustained attention and via self-report. These findings are relevant for understanding the significance of sleep for adolescents' day-to-day alertness levels and fatigue, particularly in the context of classroom learning and road safety.

Elevated core temperature in addition to mental fatigue impairs aerobic exercise capacity in highly trained athletes in the heat

The purpose of this study was to investigate the effects of elevated core temperature by exposure to heat stress vs. heat exposure without elevated core temperature (mean skin temperature only) in addition to mental fatigue on aerobic exercise capacity in the heat. Seven highly trained athletes completed two experimental conditions: elevation in core and skin temperatures (hyperthermia: HYP), and skin temperatures (SKIN). Participants performed the AX-Continuous Performance Task and Stroop Task to induce mental fatigue during a warm water immersion at 40 °C (HYP) and a passive seated heat exposure in a climatic chamber at 35 °C and 60% relative humidity (SKIN) for 45 min before exercise. Thereafter, participants performed running trial at 80% maximal oxygen uptake until voluntary exhaustion in the same chamber as the SKIN. Exercise time to exhaustion was significantly shorter in the HYP trial (538 ± 200 s) than in the SKIN trial (757 ± 324 s). Rectal temperature at the end of tasks in the HYP trial increased by 0.86 ± 0.26℃ and was significantly higher (37.69 ± 0.18℃) than that of the SKIN trial (36.96 ± 0.13℃), albeit no significant differences in mean skin temperature. Self-reported mental fatigue using visual analog scale was significantly higher after tasks in both trials, but no significant difference between trials was found. Throughout the trial, salivary cortisol concentration and perceptual responses were not affected by hyperthermia. This study demonstrated that a combination of high core temperature and mean skin temperature, and mental fatigue limit aerobic exercise capacity in highly trained athletes in hot environments compared with heat exposure without an elevation of core temperature.

Liver disease-linked metabolic and behavioral factors associated with cognitive performance in an observational study of community dwelling adults.

Modifiable risk factors associated with cognitive functioning are important for identifying potential targets for intervention development. Although there are a few recognized modifiable risk factors (e.g., diabetes mellitus, diet, physical activity), there are limitations in the conclusions that can be drawn due to limited data. Therefore, this study examined the relationship between modifiable liver disease-linked metabolic and behavioral factors in a sample of community dwelling adults who do not currently experience functional limitations due to cognitive abilities. Individuals aged 19 to 69 were recruited to participate in this cross-sectional study in the Washington, DC area. Participants were assessed using anthropometric measures, ultrasound of the liver, glycated hemoglobin A1C, self-reported fatigue, clinical history, and 7 domains of cognitive function: processing speed, short- and long-term visual memory, working memory, inhibition, shifting, and abstract reasoning. The study included 104 participants (44% female, 51.1 ± 13.5 years old). The modifiable factors that were most consistently related to cognitive performance were waist-to-height ratio, which was related to a decrease in performance in 4 of the domains (short-term and long-term visual memory, working memory, and abstract reasoning), and the presence of nonalcoholic fatty liver disease, which was related to an increase in performance in the same 4 domains. This study suggests that liver disease-linked modifiable factors are associated with cognitive performance, even in middle-aged individuals without self-reported cognitive dysfunction. Further research is needed to explore the mechanisms that impact cognitive performance in relation to these factors to establish early intervention targets for reducing future cognitive deficits.

NCOG-29. HIGHER HYPOTHALAMIC RADIATION DOSE AND FEMALE GENDER ARE RELATED TO HIGHER SELF-REPORTED FATIGUE

Abstract BACKGROUND Fatigue is among the most common symptoms managed by patients with cancer. Hypothalamic pituitary axis dysfunction has an established role in a subset of patients with fatigue. Our primary aim was to longitudinally assess the impact of hypothalamic radiation exposure to patient self-reported fatigue. METHODS We included a sample of patients who received radiation therapy treated at a single institution from 2014-2024. The PROMIS-10 questionnaire (“How would you rate your fatigue on average,” scale 1-5) was used in standard clinical practice, with measures from 6 time points over 2 years. We performed descriptive statistics. Linear mixed models were used to assess the impact of hypothalamic radiation dose on fatigue scores. Mixed models were controlled for gender, age, time, tumor category (CNS vs. non-CNS), and modality (photon vs. proton). Models were fit with random intercepts for each Patient ID. RESULTS 1092 patients (43% female) with a median age of 54 years (range: 18-92) were included. Most patients were treated for CNS cancer (76%), with about 50% each photon and proton. Median hypothalamus radiation dose was 1306 cGy (range: 0.01-6138). Mean baseline fatigue (2.4) increased after treatment (2.7) remaining elevated at 3- and 6-months post-treatment (2.6, 2.5), returning near baseline at 1- and 2-years post-treatment (2.4, 2.3). Higher radiation dose (Estimate (SE): 0.014 (0.006), p=0.0266) and CNS cancer treatment (0.11 (0.051), p=0.0319) were significant predictors of higher fatigue in the mixed model. Male patients (-0.16 (0.042), p=0.0001) and time (-0.003 (0.0016), p=0.0398) were associated with lower fatigue. Age and treatment modality were not significant predictors of fatigue. CONCLUSIONS We found that higher hypothalamic radiation dose was related to more self-reported fatigue, which peaked by 6 months. This effect was seen more prominently in female patients and those treated for CNS disease. Treatment modality and age did not influence fatigue scores.

QOL-19. IMPROVING SLEEP IN THOSE WITH PRIMARY BRAIN TUMORS (PBT): A GLIMPSE INTO THE CAREGIVER’S PERSPECTIVE FOLLOWING COGNITIVE BEHAVIORAL THERAPY FOR INSOMNIA (CBT-I)

Abstract BACKGROUND Sleep disturbance is commonly endorsed by individuals diagnosed with primary brain tumor (PBT), yet few providers in neuro-oncology assess for sleep disturbance, and even less recommend the gold standard treatment for insomnia: Cognitive Behavioral Therapy for Insomnia (CBT-I). In our pilot of a group-based, six-session, telehealth-delivered CBT-I program, PBT patients (N=44) demonstrated clinically significant improvements in self-reported insomnia, fatigue, and sleep quality. The aim of this secondary analysis was to examine informal caregivers’ perspectives of the CBT-I intervention and its impact on patients sleep. METHODS Caregivers (N=15, Mage=47.2±14; 53% female; 80% spouses; 93% cohabitating) of patients with PBT and insomnia completed a semi-structured exit interview, following their loved ones’ participation in CBT-I. Descriptive analysis included: perceived improvement in patient and caregiver sleep (rating 1-10; 1=no improvement, 10=great improvement), perceived benefits and drawbacks of CBT-I (open-ended), and caregivers’ recommendation of CBT-I to others with PBT and insomnia (Y/N). RESULTS Most caregivers (73%) noticed a moderate-to-great improvement (≥5/10) in the patient’s sleep and 20% endorsed improvements in their own sleep, following CBT-I. Observed patient benefits included: increased sleep, energy, motivation for change, use of a sleep regimen, and support. Caregivers noted minimal drawbacks of CBT-I, though some found the inflexible sleep schedule disrupted family plans and others wished to be more actively involved in the intervention. Nearly all (87%) would recommend CBT-I to others with PBT and insomnia. CONCLUSIONS Findings suggest that caregivers observed benefit in the patients’ sleep following a brief behavioral intervention for insomnia, further supporting the acceptability of CBT-I for patients with PBT and insomnia. Future directions include a randomized, two-arm pilot of CBT-I and encouraging caregiver participation in the intervention, both to increase their understanding of CBT-I intervention components for maximum benefit in the patient and to possibly improve their own sleep.

The Prognostic Value for Survival of Self-Reported Fatigue in Patients with Newly Diagnosed Myelodysplastic Syndromes: An International Prospective Observational Study By the Gimema

The Prognostic Value for Survival of Self-Reported Fatigue in Patients with Newly Diagnosed Myelodysplastic Syndromes: An International Prospective Observational Study By the Gimema

Active Inference Models of AV Takeovers: Relating Model Parameters to Trust, Situation Awareness, and Fatigue.

Our objectives were to assess the efficacy of active inference models for capturing driver takeovers from automated vehicles and to evaluate the links between model parameters and self-reported cognitive fatigue, trust, and situation awareness. Control transitions between human drivers and automation pose a substantial safety and performance risk. Models of driver behavior that predict these transitions from data are a critical tool for designing safer, human-centered, systems but current models do not sufficiently account for human factors. Active inference theory is a promising approach to integrate human factors because of its grounding in cognition and translation to a quantitative modeling framework. We used data from a driving simulation to develop an active inference model of takeover performance. After validating the model's predictions, we used Bayesian regression with a spike and slab prior to assess substantial correlations between model parameters and self-reported trust, situation awareness, fatigue, and demographic factors. The model accurately captured driving takeover times. The regression results showed that increases in cognitive fatigue were associated with increased uncertainty about the need to takeover, attributable to mapping observations to environmental states. Higher situation awareness was correlated with a more precise understanding of the environment and state transitions. Higher trust was associated with increased variance in environmental conditions associated with environmental states. The results align with prior theory on trust and active inference and provide a critical connection between complex driver states and interpretable model parameters. The active inference framework can be used in the testing and validation of automated vehicle technology to calibrate design parameters to ensure safety.

Resilience, Mental Health, Sleep, and Smoking Mediate Pathways Between Lifetime Stressors and Multiple Sclerosis Severity.

Lifetime stressors (e.g., poverty, violence, discrimination) have been linked to features of multiple sclerosis (MS); yet mechanistic pathways and relationships with cumulative disease severity remain nebulous. Further, protective factors like resilience, that may attenuate the effects of stressors on outcomes, are seldom evaluated. To deconstruct pathways between lifetime stressors and cumulative severity on MS outcomes, accounting for resilience. Adults with MS (N = 924) participated in an online survey through the National MS Society listserv. Structural equation modeling was used to examine the direct and indirect effects of lifetime stressors (count/severity) on MS severity (self-reported disability, relapse burden, fatigue, pain intensity, and interference) via resilience, mental health (anxiety and depression), sleep disturbance, and smoking. The final analytic model had an excellent fit (GFI = 0.998). Lifetime stressors had a direct relationship with MS severity (β = 0.27, p < 0.001). Resilience, mental health, sleep disturbance, and smoking significantly mediated the relationship between lifetime stressors and MS severity. The total effect of the mediation was significant (β = 0.45). This work provides foundational evidence to inform the conceptualization of pathways by which stress could influence MS disease burden. Resilience may attenuate the effects of stressors, while poor mental health, smoking, and sleep disturbances may exacerbate their impact. Parallel with usual care, these mediators could be targets for early multimodal therapies to improve the disease course.

Longitudinal relationships between free-living activities, fatigue, and symptom severity in myasthenia gravis using cohort and individualized models.

Fluctuating symptoms and fatigue are common issues in myasthenia gravis (MG), but it is unclear if these symptoms are related to physical activity or sleep patterns. This study sought to determine the day-to-day relationship between patient-reported symptoms and physical activity and sleep over 12 weeks. Sixteen participants with generalized MG wore a wrist-mounted accelerometer continuously for the study duration and reported their symptoms and fatigue each evening. Cumulative link mixed models were used to analyze whether clinical and demographic characteristics, physical activity, and sleep were related to symptom severity and fatigue over the study period. Three types of models were constructed: a cohort model, a model in which data was scaled to each participant, and individual models. The cohort model indicated that higher disease severity, female sex, more comorbidities, less physical activity, more inactive time, and lower quantity of sleep were significantly associated with increased symptom severity and fatigue (p < .05). However, in the within-participant scaled model, there were almost no significant associations with physical activity or sleep. In the individual models, some participants showed similar results to the cohort model, but others showed no associations or the opposite response in some variables. While physical activity and sleep were associated with self-reported symptoms and fatigue within this population, this was not necessarily applicable to individuals. This demonstrates the importance of an individualized analysis for determining how physical activity and sleep may impact outcomes in MG, with implications for clinical and self-management.