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Aficamten is a cardiac myosin inhibitor that mitigates left ventricular outflow gradients in obstructive hypertrophic cardiomyopathy (oHCM). The clinical efficacy of aficamten across multiple outcome domains in oHCM has not been fully defined. This responder analysis from the SEQUOIA-HCM (Phase 3 Trial to Evaluate the Efficacy and Safety of Aficamten Compared to Placebo in Adults With Symptomatic oHCM) trial characterizes the clinical impact of aficamten. Patients who were symptomatic of oHCM were randomized to aficamten (n = 142) or placebo (n = 140) daily for 24 weeks. Outcomes assessed included the proportion of patients with complete hemodynamic response (rest and Valsalva gradient <30 mm Hg and <50 mm Hg, respectively), relief in limiting symptoms (≥1 improvement in NYHA functional class and/or ≥10-point change in Kansas City Cardiomyopathy Questionnaire–Clinical Summary Score), enhanced exercise capacity (≥1.5 mL/kg/min change in peak oxygen uptake), and ≥50% reduction in N-terminal pro–B-type natriuretic peptide. Eligibility for septal reduction therapy was also evaluated. At 24 weeks, patients treated with aficamten vs placebo showed significant improvement in limiting symptoms (71% vs 42%), were more likely to have complete hemodynamic response (68% vs 7%), demonstrated enhanced exercise capacity (47% vs 24%), and showed a decrease ≥50% in N-terminal pro–B-type natriuretic peptide (84% vs 8%) (P ≤ 0.002 for all). An improvement in ≥1 of these outcome measures was achieved in 97% of patients treated with aficamten (vs 59% placebo), including 23% on aficamten who achieved all 4 outcomes compared with none in placebo. Among 32 patients receiving aficamten and 29 patients receiving placebo who were eligible for septal reduction therapy, 28 (88%) from the aficamten group were no longer eligible at 24 weeks compared with 15 (52%) from the placebo group (P = 0.002). Treatment with aficamten was associated with substantial improvements across a broad range of clinically relevant efficacy measures. These results underscore the wide-ranging potential of aficamten for treatment of patients with symptomatic oHCM (Phase 3 Trial to Evaluate the Efficacy and Safety of Aficamten Compared to Placebo in Adults with oHCM [SEQUOIA-HCM]; NCT05186818) [ABSTRACT FROM AUTHOR]

Aim: This study was conducted to address the experiences of diabetic patients from a psychosocial perspective, examine the burden of disease, and determine their practices for symptom management. Materials and Methods: In this study, a phenomenological research design, a qualitative research design, was used. The study included 20 diabetic patients. Individual and face‐to‐face interviews were performed, and Colaizzi's phenomenological analysis method was used to analyze the data. Results: As a result of the data analysis, four categories (challenges with care and treatment, coping with the disease, effects, and healthy life behaviors) and eleven main themes (knowledge, application, symptoms, support resources, spiritual coping methods, physical coping methods, physical effects, spiritual effects, social effects, physical practices, and psychological practices) emerged. Conclusion: It was concluded that the disease burden of diabetic patients is intense and that the participants of the study were not effective in coping with the disease through symptom management and found spirituality important in coping. [ABSTRACT FROM AUTHOR]

Sudden gains and sudden losses are abrupt, large changes in symptom severity between two consecutive psychotherapy sessions. Sudden gains (i.e., large improvements in symptom severity) seem to be associated with better treatment outcomes and have thus received considerable attention in clinical psychology over the last 2 decades. However, simulation studies indicate that the most common approach used to detect sudden gains is prone to misclassifications, implying that sudden gain research might be hindered by false positive and false negative findings. Although other sudden gain detection approaches exist, their performance has not yet been investigated and compared to the conventional method. To close this gap, we conducted a simulation study comparing the performance of the conventional approach and four alternative sudden gain detection approaches depending on the type of symptom trajectory, the number of measurements, the reliability of the measurement scores, and the amount of fluctuation around the trajectories. We found that all five detection approaches performed well in the simulation condition with nearly no variability (i.e., low reliability and small fluctuations). However, in conditions with medium or high variability in the data, all detection methods performed poorly. These results suggest that future studies should investigate further potential methods to detect sudden gains and/or examine ways to improve existing methods, such as by considering measurement error. Public Significance Statement: This study compares methods that are currently used to detect sudden gains in symptom severity—a phenomenon that is associated with better treatment outcomes and, therefore, relevant in clinical psychology—as well as potential alternatives. We show that all detection methods perform poorly under nonoptimal conditions, suggesting that these methods have to be improved in order to enable research to gain more insight into sudden gain processes. [ABSTRACT FROM AUTHOR]

Device aided therapies (DAT) comprising the intrajejunal administration of levodopa/carbidopa intestinal gel (LCIG) and levodopa/carbidopa/entacapone intestinal gel (LECIG), the continuous subcutaneous application of foslevodopa/foscarbidopa or apomorphine infusion (CSAI) and deep brain stimulation (DBS) are used to treat Parkinson's disease with insufficient symptom alleviation under intensified pharmacotherapy. These DAT significantly differ in their efficacy profiles, indication, invasiveness, contraindications, and potential side effects. Usually, the evaluation of all these procedures is conducted simultaneously at the same point in time. However, as disease progression and symptom burden is extremely heterogeneous, clinical experience shows that patients reach the individual milestones for a certain therapy at different points in their disease course. Therefore, advocating for an individualized therapy evaluation for each DAT, requiring an ongoing evaluation. This necessitates that, during each consultation, the current symptomatology should be analyzed, and the potential suitability for a DAT be assessed. This work represents a critical interdisciplinary appraisal of these therapies in terms of their individual profiles and compares these DAT regarding contraindications, periprocedural considerations as well as their efficacy regarding motor- and non-motor deficits, supporting a personalized approach. [ABSTRACT FROM AUTHOR]

Objective: A recent study was designed to ascertain the impact of extracorporeal shock wave therapy on upper trapezius trigger points in cervicogenic headaches patients. Design: A double-blinded randomized controlled trial study, in which 50 participants (11 male and 39 female) aged between 20–40 with cervicogenic headache were subdivided with randomization to group (A), which received traditional physical therapy and sham shock wave therapy, and group (B), which received traditional physical therapy and actual shock wave therapy. All assessments were performed by a therapist before and after the treatment program (4 wks). Results: There was a significant difference of headache disability index, visual analog scale scores, and upper trapezius electromyographic characteristics with P value <0.05 in both groups, in favor of the shock wave group. Conclusions: Extracorporeal shock wave therapy could be used for clinical and research concerns because its positive effects on pain suppression, reduction of headache intensity, and restoration of muscle regular activity in cervicogenic headache patients. [ABSTRACT FROM AUTHOR]

The objective of this study was to explore the role that Autistic identity, sensory processing and camouflaging behaviours have on eating disorder symptomology in Autistic adults. Previous research has focused on cognitive and sensory factors to explain the association between autism and eating disorders, but the roles of social identity and camouflaging are yet to be explored. Autistic participants (N = 180) were recruited from NHS settings and community groups. The participants completed online questionnaires measuring autistic identity, camouflaging behaviours, sensory processing, autistic traits and eating disorder symptoms. Multiple regression revealed that camouflaging significantly predicted eating disorder symptoms. Although sensory processing was related, it did not significantly predict eating disorder symptom severity. In addition, there was no significant relationship between autistic identity and eating disorder symptom severity. This study highlights the impact that camouflaging behaviours and sensory processing can have on eating disorder symptomatology in autism and may indicate important considerations for the treatment of eating disorders in Autistic people. This study aimed to explore the impact of Autistic identity (i.e. feeling like you belong to the Autistic community), sensory profiles (e.g. being over or under responsive to sensations) and camouflaging behaviours (i.e. masking) on eating disorder symptoms in Autistic adults. 180 Autistic people were recruited from the community and NHS. The Autistic people completed online questionnaires measuring Autistic identity, sensory profiles, camouflaging behaviours, autistic traits and eating disorder symptoms. The analysis showed that higher levels of camouflaging behaviour predicted higher levels of eating disorder symptoms. Sensory profiles were related to but did not predict eating disorder symptoms and there was no relationship between level of Autistic identity and eating disorder symptoms. This shows that camouflaging is the most important predictor of eating disorder symptoms in Autistic people, and warrants further exploration. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To identify subgroups of patients with distinct psychological profiles at the beginning of the COVID-19 pandemic and evaluate for differences. SAMPLE & SETTING: Online survey of patients with cancer during the COVID-19 pandemic. METHODS & VARIABLES: Patients completed measures of demographic and clinical characteristics, as well as cancer- and COVID-19-related stress, global stress, social isolation, loneliness, financial toxicity, and common symptoms. Latent profile analysis was used to identify distinct psychological profiles. RESULTS: Among 1,145 patients, three subgroups were identified (i.e., no anxiety or depression and normative level of resilience; high depression, high anxiety, and low resilience; and very high depression, very high anxiety, and very low resilience). Patients with the two worst psychological profiles were younger, more likely to be female, more recently diagnosed with cancer, and more likely to have breast cancer. IMPLICATIONS FOR NURSING: Findings may assist clinicians to identify patients at increased risk for significant psychological morbidity and provide more timely, targeted, and cost-effective interventions. [ABSTRACT FROM AUTHOR]

Objective: To describe the development and validation of a novel patient reported scale, which is a comprehensive assessment of the physical function and health specific for patients with axial spondyloarthritis (axSpA). Methods: This is a multiphase, mixed methods study. Based on opinion collection and discussions of multidisciplinary consensus meetings and patients, an initial item pool covering all of the ranges of functioning was generated. The item optimization, model fit, response category functioning, differential item functioning, reliability, structure validity, and unidimensionality were tested by confirmatory factor analysis and Rasch measurement theory framework. Results: After the consensus meeting and the two rounds of surveys in patients with axSpA, the initial pool of 135 items was reduced to 25 items formed in five dimensions, which exhibited preferable item reliability, item fit, and person fit to the Rasch model. The Five-Dimensional Comprehensive Assessment Scale (5DCAS) had the best reliability and validity (Kaiser–Meyer–Olkin was 0.919, and the standardized Cronbach's α coefficient was 0.932). The final version of 5DCAS had good unidimensionality, and the Person Separation Index ranged from 0.77 to 0.85. 5DCAS significantly correlated with ASAS-HI, SF-36, BASFI, and disease activity with p values of < 0.001. Conclusion: 5DCAS is a novel patient-reported outcome specific to axSpA, and it forms five dimensions providing a linear sum score of 25 items. 5DCAS comprehensively and significantly represents the physical function and health status of patients with axSpA, although its performance needs further validation in future clinical practices. Key Points • The primary goal in the management of axial spondyloarthritis is to maximize health-related quality of life. Except for the current instruments of ASAS-HI, BASFI, or SF-36, the heterogeneous clinical symptoms and rapid updated treat-to-target concept require a new instrument which can comprehensive and significant evaluate the changes of physical function and health-related quality of life due to disease. • 5DCAS is a novel patient-reported outcome specific to axSpA, and it forms five dimensions providing a linear sum score of 25 items, which contained aspect of pain involvement, spine mobility, global body performance and activity, social participation and environment, and mental health. All of the items were set to a 4-point semantic rating scale measuring severity, frequency, or interference from score 0 to 3. Total 5DCAS score ranges from 0 to 75; higher scores represented greater symptom burden and worse physical function. • 5DCAS is a comprehensive, multidisciplinary, and convenient disease outcome measurement specific for axSpA. It provides a new evaluation instrument in clinical trial and treat-to-target clinical remission for patients and physicians, and also provides a sensitive and accurate assessment standard for optimized health benefits. [ABSTRACT FROM AUTHOR]

Primary Objective: This is Part II of a four-part opinion review on traditional neuropsychological assessment methods and findings associated with mild traumatic brain injury (mTBI). This Part II review focuses on historical, psychometric and statistical issues involving traditional neuropsychological methods that have been used in neuropsychological outcome studies of mTBI, but demonstrates the critical limitations of traditional methods. Research Design: This is an opinion review. Methods and Procedures: Traditional neuropsychological tests are dated and lack specificity in evaluating such a heterogenous and complex injury as occurs with mTBI. Main Outcome and Results: In this review, we demonstrate traditional neuropsychological methods were never developed as standalone measures for detecting subtle changes in neurocognitive or neurobehavioral functioning and likewise, never designed to address the multifaceted issues related to underlying mTBI neuropathology symptom burden from having sustained a concussive brain injury. Conclusions: For neuropsychological assessment to continue to contribute to clinical practice and outcome literature involving mTBI, major innovative changes are needed that will likely require technological advances of novel assessment techniques more specifically directed to evaluating the mTBI patient. These will be discussed in Part IV. [ABSTRACT FROM AUTHOR]

Summary: Background: Inflammatory bowel disease (IBD) follows a heterogenous disease course and predicting a patient's prognosis is challenging. There is a wide burden of illness in IBD and existing tools measure disease activity at a snapshot in time. Comprehensive assessment of IBD severity should incorporate disease activity, prognosis, and the impacts of disease on a patient. This review investigates the concept of disease severity in adults with IBD to highlight key components contributing to this. Methods: To perform this narrative review, a Medline search was conducted for full‐text articles available at 1st March 2024 using search terms which encompassed disease activity assessment, disease severity, prognosis, natural history of Crohn's disease (CD) and ulcerative colitis (UC), and the burden of IBD. Results: Current methods of disease assessment in IBD have evolved from a focus on the burden of symptoms to one that includes inflammatory targets, genetic, serological, and proteomic profiles, and assessments of quality‐of‐life (QoL), disability, and psychosocial health. Longitudinal studies of IBD suggest that the burden of illness is driven by disease phenotype, clinical markers of complicated disease course (previous intestinal resection, corticosteroid use, perianal disease in CD, recent hospitalisations in UC), gut inflammation, and the impact of IBD on the patient. Conclusions: Disease severity in IBD can be difficult to conceptualise due to the multitude of factors that contribute to IBD outcomes. Measurement of IBD severity may better encapsulate the full burden of illness rather than gut inflammation alone at a single timepoint and may be associated with longitudinal outcomes. [ABSTRACT FROM AUTHOR]

Summary: Background: Treatments targeting the gut–brain axis (GBA) are effective at reducing symptom burden in irritable bowel syndrome (IBS). The prevalence of common mental disorders and IBS‐type symptom reporting is significantly higher in inflammatory bowel disease (IBD) than would be expected, suggesting potential GBA effects in this setting. Manipulation of the GBA may offer novel treatment strategies in selected patients with IBD. We present a narrative review of the bi‐directional effects of the GBA in IBD and explore the potential for GBA‐targeted therapies in this setting. Methods: We searched MEDLINE, EMBASE, EMBASE Classic, PsychINFO, and the Cochrane Central Register of Controlled Trials for relevant articles published by March 2024. Results: The bi‐directional relationship between psychological well‐being and adverse longitudinal disease activity outcomes, and the high prevalence of IBS‐type symptom reporting highlight the presence of GBA‐mediated effects in IBD. Treatments targeting gut–brain interactions including brain–gut behavioural treatments, neuromodulators, and dietary interventions appear to be useful adjunctive treatments in a subset of patients. Conclusions: Psychological morbidity is prevalent in patients with IBD. The relationship between longitudinal disease activity outcomes, IBS‐type symptom reporting, and poor psychological health is mediated via the GBA. Proactive management of psychological health should be integrated into routine care. Further clinical trials of GBA‐targeted therapies, conducted in selected groups of patients with co‐existent common mental disorders, or those who report IBS‐type symptoms, are required to inform effective integrated models of care in the future. [ABSTRACT FROM AUTHOR]

Cow's milk protein allergy (CMPA) affects 2% to 3% of infants and is managed with hypoallergenic formulas. The 2022 recalls of infant formulas due to factors including contamination led to specialty formula shortages, highlighting CMPA management challenges. Understanding health care providers' (HCPs) decision-making in transitioning to alternative formulas during shortages is crucial. Limited attention has been given to how pediatric physicians make these choices. This study utilized US HCPs' de-identified survey data to assess driving factors when switching extensively hydrolyzed formulas during shortages. A total of 104 eligible HCPs participated, including general pediatrics, pediatric allergy/immunology, and pediatric gastroenterology specialists. Safety, tolerability, and efficacy were identified as top factors for switching formulas. Formula 1 was considered well-tolerated, patient-accepted, and safe by all HCPs. Most expressed strong belief in Formula 1's safety and effectiveness. Findings inform CMPA management during shortages, offering guidance to HCPs for suitable formula selection and enhanced infant care. [ABSTRACT FROM AUTHOR]

Objectives: The extent of health‐related quality of life (HRQOL) impairments in older hematological cancer survivors (HCS) has not been sufficiently studied. We therefore examined HRQOL in older HCS compared to a community sample (CS) and investigated sociodemographic, disease‐ and treatment‐specific, geriatric, and psychosocial factors associated with reduced HRQOL. Materials and Methods: In this cancer‐register‐based cross‐sectional comparative study 200 HCS, aged ≥70 years, and 252 persons of an age‐ and gender‐matched CS completed validated questionnaires including the EORTC QLQ‐C30 and EORTC QLQ‐ELD14. Results: Older HCS reported a reduced HRQOL in the dimensions of global QOL, physical, role, and social functioning (small clinical significance) and higher symptom burden of fatigue, nausea and vomiting, appetite loss, and poorer mobility compared to the CS (fatigue and mobility with medium, the others with small clinical significance). Perceived disease burden of comorbidities, functional disabilities, psychological distress, and depression showed statistical significance for reduced HRQOL in older HCS in multiple linear regression analysis (R2 =.602, p <.001). Discussion: The screening and treatment of functional limitations and individual symptoms and the integration of a geriatric assessment into oncological practice can help to identify supportive care needs, to implement individualized, patient‐centered cancer survivorship care programs and to improve older HCS's HRQOL. [ABSTRACT FROM AUTHOR]

Objectives: We aimed to characterise baseline disease and treatment burden in a large population with haemophilia A/B, both with (HAwI/HBwI) and without (HA/HB) inhibitors. Methods: The prospective, non‐interventional explorer6 study included patients ≥12 years old with severe HA, severe/moderate HB or HAwI/HBwI of any severity, treated according to local standard of care (excluding previous/current exposure to concizumab or emicizumab). Baseline characteristics and historical clinical data were collected and patient‐reported outcomes, including treatment burden, were assessed. Results: The explorer6 study enrolled 231 patients with haemophilia (84 HAwI/HBwI) from 33 countries. At baseline, patients with HA/HB treated with prophylaxis had the lowest median annualised bleeding rates (ABRs; 2.0), irrespective of haemophilia type; of these patients, 27.5% (HA) and 31.4% (HB) had target joints. Patients with HAwI/HBwI treated episodically reported the highest treatment burden. Of these patients, 28.5% (HAwI) and 25.1% (HBwI) performed sports activities in the month before screening. Conclusion: Despite receiving routine clinical care, historical and baseline information from patients enrolled in explorer6 showed that patients with HA/HB treated episodically and patients with HAwI/HBwI had higher ABRs, higher treatment burden and participated in sports less than those with HA/HB treated with prophylaxis. Emerging treatments could be beneficial in addressing these unmet medical needs. [ABSTRACT FROM AUTHOR]

This study aims to assess early effects of chemotherapy on symptom alleviation, nutritional status, and mental health in elderly patients with advanced non-small-cell lung cancer (NSCLC). This prospective study included 45 NSCLC patients (32 males, 13 females) aged 65–82 years (mean age 70.0 ± 4.5 years) with good performance status. Assessments were conducted immediately after diagnosis and after two chemotherapy cycles, focusing on nutritional status (assessed with MNA questionnaire), quality of life (QoL, based on FACT-L and FACT-TOI questionnaires), lung cancer-related symptoms (based on LCSS), and mental health (based on PHQ-9 questionnaire). Despite significant alleviation of symptoms like cough, dyspnea, and body weight loss, there was no significant correlation between changes in symptoms burden and changes in nutritional status (r2 = 0.122, P = 0.427), and change of patients' mental condition (r2 = –0.141, P = 0.255). No significant QoL changes were noted, but a decrease in severe depression frequency was observed. The improvement of patients' mental condition was related strictly to the improvement of nutritional status (r2 = -0.589, P < 0.001). The study highlights the vital link between nutritional status and mental health in elderly NSCLC patients, emphasizing the need for integrated care approaches that address both aspects to enhance treatment effectiveness and patient well-being. [ABSTRACT FROM AUTHOR]

Background: This study characterized the impact of baseline symptom burden on long‐term quality‐of‐life in patients receiving head and neck radiation therapy (RT). Methods: The Vanderbilt Head and Neck Symptom Survey was collected prior to head and neck RT and at follow‐up visits. Responses were divided into symptom clusters of toxicities and scored from 0 (asymptomatic) to 10 (severe). Patients with responses at baseline and 1‐year or 2‐year follow‐up were stratified by scores ≤1 or >1 and compared using the Mann–Whitney U‐test. Results: At 1‐year follow‐up (n = 75), patients with higher baseline scores had greater symptom burden for every cluster except in taste/smell. At 2‐year follow‐up (n = 47), patients with higher baseline scores had greater symptom burden for every cluster except in nutrition, dry mouth, trismus, neck tightness, and hearing. Conclusion: The Vanderbilt Head and Neck Symptom Survey demonstrated a relationship between baseline symptom burden and long‐term quality‐of‐life and might be useful as a screening tool. [ABSTRACT FROM AUTHOR]

Introduction: Patients experience high symptom burden during critical care hospitalization and mechanical ventilation. Medications are of limited effectiveness and are associated with increased morbidity such as delirium and long-term cognitive and psychological impairments. Music-based interventions have been used for pain and anxiety management in critical care but remain understudied in terms of music selection and range of symptoms. This study aimed to describe the ways in which a diverse sample of critically ill adults used personalized music listening and their perceptions of the effects of music listening on symptom experience after critical injury. Methods: Semi-structured interviews (N = 14) of adult patients, families and friends who were provided with personalized music in an urban, academic, neurotrauma intensive care unit were collected and analyzed with grounded theory methodology. Open coding of transcripts, field notes and memos was performed using Atlas.ti.9.1. Recruitment and data collection were deemed complete once thematic saturation was achieved. Results: We identified 6 uses of personalized music listening in critical care: 1) Restoring consciousness; 2) Maintaining cognition; 3) Humanizing the hospital experience; 4) Providing a source of connection; 5) Improving psychological wellbeing; and 6) Resolving the problems of silence. Patients used music to address psychological experiences of loneliness, fear, confusion, and loss of control. Personalized music helped patients maintain their identity and process their trauma. Additional benefits of music included experiencing pleasure, hope, resilience, and feelings of normalcy. Patients disliked being sedated and used music to wake up. Findings also highlighted the problem of the lack of meaningful stimulation in critical care. Conclusion: Critically injured adults used personalized music to achieve psychological and cognitive homeostasis during critical care hospitalization. These results can inform future studies designed to explore the use of music-based interventions to prevent and treat the cognitive and emotional morbidity of critical care. [ABSTRACT FROM AUTHOR]

Background: Lyme borreliosis is by far the most common vector-borne infection in Western Europe. The most severe manifestation of Lyme borreliosis is Lyme neuroborreliosis (LNB). In LNB symptoms vary from mild to severe and may include late complications that involve both physical and/or neurocognitive constraints. An estimated 25–28% of the LNB population suffers from late complications. This study investigates patient and relative perspectives on everyday life with LNB symptoms, diagnosis, and treatment to identify areas for improvement of healthcare. Methods: A focus group was conducted at Odense University Hospital, Denmark. The focus group comprised 16 participants, nine patients diagnosed with LNB who had been treated at the Clinical Center for Emerging and Vector-borne Infections, and seven relatives of the patients' choice. The focus group lasted 2 ½ hours and was audio recorded as well as documented in field notes. Results: Data analysis was grounded in the conceptual framework of critical psychology and resulted in three main themes: (1) Burden of LNB symptoms in everyday life, (2) A break in the conduct of everyday life caused by LNB and (3) Need for transparent pathways to specialist knowledge. Conclusions: Before diagnosis and treatment, each patient reported varying degrees of non-treatable pain, and cognitive and/or musculoskeletal symptoms. Visible physical symptoms were rare. All patients had experienced that their bodily symptoms remained unaddressed throughout numerous encounters with the healthcare system. The course of LNB comes with a break in patients' everyday lives and self-understandings affecting their ability to work and manage everyday activities. Patients and relatives strongly recommend a specialised LNB clinic. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims and Objectives Background Design Methods Results Conclusion Clinical Relevance The purpose of this study was to explore the relationship between symptom clusters and self‐management among maintenance haemodialysis (MHD) patients.MHD patients experience disease progression and multiple symptom burdens that severely impact quality of life, and self‐management of symptoms may significantly improve patient‐reported outcomes.A cross‐sectional study.This cross‐sectional descriptive study included 194 patients undergoing MHD. The patients were assessed using the Dialysis Symptom Index (DSI) and the Haemodialysis Self‐Management Instrument (HD‐SMI). We used descriptive analysis, exploratory factor analysis, Pearson's correlation analysis and linear regression analysis to examine (1) the level of individual self‐management, (2) the presence of symptom clusters by symptom severity and (3) the correlation between symptom clusters and self‐management behaviours. This study was conducted in accordance with the STROBE checklist.The top five most severe symptoms among the patients were itching, feeling tired or lack of energy, difficulty sleeping, dry mouth and dry skin. We identified five groups of symptoms: (1) poor sleep, (2) neuromuscular, (3) gastrointestinal, (4) skin irritation and (5) psychological. In the present study, MHD patients reported low to moderate levels of self‐management behaviours (50.84 ± 10.56), and low self‐management ability was correlated with greater severity of the five symptom clusters (p < 0.01). Linear regression analysis revealed that all five symptom clusters were included in the regression equation, explaining 30% of the total variance in self‐management skills among MHD patients.Enhanced awareness of symptom clusters and comprehensive symptom management are necessary to improve patients' quality of life.Nursing practices should incorporate comprehensive symptom assessments to help patients develop effective self‐management strategies to improve quality of life. [ABSTRACT FROM AUTHOR]

Background: The prevalence of dementia is increasing worldwide and many people with the condition require some level of palliative care. However, the trajectories of function and symptom burden in palliative care services at the end of life remain unclear. This study aimed to describe and compare the longitudinal trajectories of function and symptom burden among patients with dementia between hospital versus palliative community care services in the last two weeks of life. Methods: A retrospective cohort study used data from the Australian Palliative Care Outcomes Collaboration. Patients with dementia who died between 1 January 2013 and 31 December 2020 from the Australian Palliative Care Outcomes Collaboration. Four validated clinical instruments were used to collect outcomes on each individual's function and symptom distress and severity. Multilevel models were used to estimate the differences in clinical trajectories between hospital and community-based palliative care in the last two weeks of life. Results: Patients with dementia tended to have low levels of distress for most symptoms but increasing levels of functional impairment. There were no or only marginally significant differences in the symptom trajectories between the community and hospital groups (OR ranged from 0.57 to 1.97). Although clinical trajectories of function were relatively similar between two groups, statistically higher functional indicators were observed for people when admitted to community palliative care services (OR = 0.42 and 2.27, respectively). Conclusions: Our findings suggest that community-based palliative care services can be as effective as hospital-based care for many patients with dementia nearing the end of life. With appropriate support for families, community-based care could serve as a viable alternative to hospital-based care for some patients in the final stages of dementia. [ABSTRACT FROM AUTHOR]

Background: Premenstrual Syndrome (PMS) and Premenstrual Dysphoric Disorder (PMDD), collectively known as Premenstrual Disorders (PMDs), cause significant distress and functional impairment, and premenstrual exacerbation (PME) affects a large proportion of women with psychiatric diagnoses. Childhood trauma is one factor that may contribute to PMD/PME risk. This study examines the relationship between childhood trauma and PMDs, PME, and non-PMD psychiatric illness. Methods: This study is a secondary analysis of data from a prospective cohort. Participants completed self-assessments on childhood trauma using the Childhood Traumatic Event Scale (CTE-S) and on premenstrual symptoms using the Premenstrual Symptoms Screening Tool (PSST). Psychiatric diagnoses were assessed through structured clinical interviews. Participants were divided into four groups based on their PSST scores and psychiatric illness status: (1) Premenstrual Disorders (PMDs; moderate to severe PMS and PMDD), (2) PME, (3) psychiatric controls (PC; individuals with psychiatric illness but no significant premenstrual symptoms), and (4) healthy controls (HC; individuals with no psychiatric illness and no significant premenstrual symptoms). Statistical analyses, including ANOVA, Tukey's HSD test, Fisher's exact test, and logistic regression, were conducted to examine differences among the groups. Results: Data from 391 participants were analyzed. Participants with PME and PC reported a higher quantity and severity of childhood traumatic events compared to HCs (p <.05). There was a weak but significant correlation between childhood trauma and premenstrual symptom burden across all groups (R = .18, p <.001). Within-group analysis revealed moderate correlations between childhood trauma and premenstrual symptoms driven by the PMD group (R = .42, p = .01). Conclusions: The findings underscore the impact of childhood traumatic events on mental health and premenstrual symptoms and highlight the need for additional research to explore the underlying mechanisms linking childhood trauma to the continuum of premenstrual disorders, to improve the efficacy of trauma-focused interventions for affected individuals. [ABSTRACT FROM AUTHOR]

Background: Evidence on how decisions regarding escalation to triple therapy and de- or re-escalation are taken and the rationale on which these decisions are based is currently limited in Germany. Objectives: The TETRIS study aims to elucidate influences on treatment decisions surrounding triple therapy in a real-world practice setting in Germany. Design: TETRIS is an ongoing, multicenter, prospective, observational cohort study recruiting patients with chronic obstructive pulmonary disease (COPD) with or without asthma who have already been treated with triple therapy for 2–48 weeks. Methods: For better representation of the treatment reality in Germany, patients are recruited from general practitioners and pulmonologists. Data are collected in two parts. Part 1 involves cross-sectional phenotyping of patients at enrollment. Part 2 involves a 2-year longitudinal follow-up period to monitor/document all visits by the patients during the 24-month observation period per routine clinical practice. Here, we report the demographic and baseline characteristics of 1213 eligible patients recruited to part 1 of the study. Results: The mean patient age was 66.4 years overall, and 29.3% (356/1213) of patients had no comorbidities. The mean CAT score was 19.4; the number of exacerbations and hospitalizations due to exacerbations in the past 3 years before starting triple therapy was 0.6 and 0.1, respectively. Dual bronchodilation with a long-acting muscarinic antagonist (LAMA) plus a long-acting β-2 agonist (LABA) was the most common therapy for COPD before initiation of triple therapy in 58.3% of patients. Conclusion: In this real-world setting in Germany, patients with COPD have a relatively low reported exacerbation rate but high symptom burden, and over 70% are multimorbid. Triple therapy is initiated in patients who are primarily highly symptomatic despite being on LAMA + LABA. Future prospective studies in patients with multimorbidity are warranted to better understand the treatment landscape across the disease spectrum. Trial registration: https://clinicaltrials.gov/study/NCT04657211 [ABSTRACT FROM AUTHOR]

Introduction: Patients with spontaneous intracranial hypotension (SIH) frequently present with several symptoms and impaired mental health. This study systematically investigates the somatic and mental symptom burden of SIH and the effect of surgical treatment. Methods: In this single-center retrospective study, patients with surgical closure of a spinal cerebrospinal fluid leak between September 2022 and July 2023 completed the Somatic Symptom Scale (SSS-8), the Somatic Symptom Disorder - B Criteria Scale (SSD-12), and the Patient Health Questionnaire (PHQ-8) preoperatively and three and 6 months postoperatively. Results: Fifty-seven patients were included. All three scores showed clearly pathological values before surgery (SSS-8: 12 [IQR 6.5-16], SSD-12: 26 [IQR 19.5-33.5], PHQ-8: 11 [IQR 6.5-15]) representing a high somatic symptom burden and relevant current depression. After surgery, there was a significant and sustainable improvement (SSS-8: 8 [IQR 3-11.75], SSD-12: 12.5 [IQR 5-21.75], PHQ-8: 4.5 [IQR 2-9], p < 0.001, respectively) that exceeded the minimal clinically important difference for every score. Conclusion: SIH presents with high somatic and mental symptom burden. Surgical treatment leads to a relevant improvement of somatic and depressive symptoms. However, even after surgical success some patients still exhibit elevated depressive scores. Depressive symptoms might be added to the typical symptomatology of SIH. [ABSTRACT FROM AUTHOR]

Background: Evidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status. Methods: A prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes. Results: The study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, <2; Cluster 2 moderate, 2–6; and Cluster 3 high, >6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster. Conclusion: Three distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes. Clinical trial registration: Clinicaltrials.gov NCT05160636. [ABSTRACT FROM AUTHOR]

The article discusses the use of hierarchical endpoints analyzed using the win-ratio method in deprescribing trials for older adults with multimorbidity. Deprescribing, the process of discontinuing drugs when harms outweigh benefits, has shown potential to improve quality of life and reduce medication burden. The win-ratio method integrates patient priorities into composite outcomes, enhancing statistical power and accounting for competing risks like mortality. This approach can advance deprescribing research by focusing on patient-centered outcomes and improving study design for clinical trials. [Extracted from the article]

Objectives: Symptoms and motivation may impact adherence to home-based exercise training programs (HETP) during cancer treatment (CT) for lung or head and neck cancer. This study aimed to identify self-reported symptoms and their frequency, as well as motivation towards an HETP during CT for primary lung or head and neck cancer. Associations between symptoms and motivation with HETP adherence were also investigated. Methods: Participants underwent CT combined with an HETP that included aerobic (walk-based) and resistance training (Theraband®). Weekly assessment was conducted using a questionnaire developed by the researchers, evaluating the presence of symptoms. A scale (0 to 10) was used to assess motivation towards the HETP. Adherence was defined as the ratio between HETP sessions completed vs. the number prescribed. Symptom frequency was recorded as the number of weeks a symptom was experienced. Linear regression was used to explore associations. Results: Twenty-four participants were included (61 ± 7 yr; 21 males; head and neck cancer n = 18; median treatment duration: 9 [7 to 11] weeks). The most commonly reported symptoms were fatigue (33%), malaise (24%) and dysphagia (23%). Average score for motivation to exercise was 6.4 ± 2.0. Adherence to the HETP was 47%. Malaise was associated with reduced adherence to HETP (p = 0.002), explaining 35% of the variance. Motivation was associated with increased adherence (p = 0.008), explaining 28% of the variance. Conclusions: Fatigue, malaise and dysphagia were among the most frequently reported symptoms during treatment. Malaise and self-motivation to exercise can significantly influence adherence to HETPs. Symptom and motivational support might be necessary when implementing HETPs during CT. [ABSTRACT FROM AUTHOR]

We recently demonstrated that transient attenuation of Toll-like receptor 4 (TLR4) in dorsal root ganglion (DRG) neurons, can both prevent and reverse pain associated with chemotherapy-induced peripheral neuropathy (CIPN), a severe side effect of cancer chemotherapy, for which treatment options are limited. Given the reduced efficacy of opioid analgesics to treat neuropathic, compared with inflammatory pain, the cross talk between nociceptor TLR4 and mu-opioid receptors (MORs), and that MOR and TLR4 agonists induce hyperalgesic priming (priming), which also occurs in CIPN, we determined, using male rats, whether (1) antisense knockdown of nociceptor MOR attenuates CIPN, (2) and attenuates the priming associated with CIPN, and (3) CIPN also produces opioid-induced hyperalgesia (OIH). We found that intrathecal MOR antisense prevents and reverses hyperalgesia induced by oxaliplatin and paclitaxel, two common clinical chemotherapy agents. Oxaliplatin-induced priming was also markedly attenuated by MOR antisense. Additionally, intradermal morphine, at a dose that does not affect nociceptive threshold in controls, exacerbates mechanical hyperalgesia (OIH) in rats with CIPN, suggesting the presence of OIH. This OIH associated with CIPN is inhibited by interventions that reverse Type II priming [the combination of an inhibitor of Src and mitogen-activated protein kinase (MAPK)], an MOR antagonist, as well as a TLR4 antagonist. Our findings support a role of nociceptor MOR in oxaliplatin-induced pain and priming. We propose that priming and OIH are central to the symptom burden in CIPN, contributing to its chronicity and the limited efficacy of opioid analgesics to treat neuropathic pain. [ABSTRACT FROM AUTHOR]

AbstractPurposeMaterials and methodsResultsConclusionTo explore the differences in mental health symptom profiles, trauma profiles, childhood trauma and comorbidities in patients with PTSD and those without PTSD.A cross-sectional study was carried out on 110 adult patients with trauma backgrounds attending a mental health outpatient clinic in Southern Oslo, Norway. In addition to self- report questionnaires, several standardized validated diagnostic tools were used to assess mental disorders. Multiple linear regression models were used to assess the association between trauma history, the mental health symptom profile of the patients, and PTSD diagnosis. Bivariate logistic regression was used to examine if childhood trauma/adversities were associated with PTSD.Patients diagnosed with PTSD had significantly higher rates of comorbid major depressive disorder, panic disorder, agoraphobia disorder, and social phobia compared to those without PTSD. We also found a positive association between PTSD diagnosis and all the different mental health symptoms domains of the Symptom Checklist-90-Revised instrument. When adjusted for age, gender, education, smoking habits, immigration, relationship, and employment status, these associations persisted with varying effects. We did not find any association between PTSD and childhood trauma/adversities, however, sexual abuse trended towards an association.Adult trauma patients with PTSD may have more comorbid disorders and mental health symptoms. Childhood trauma may be less critical for the PTSD diagnosis in this group. In clinical practice, personalized treatment plans addressing both the symptom burden and its comorbidities may be beneficial. [ABSTRACT FROM AUTHOR]

Background Vaccination against coronavirus disease 2019 (COVID-19) can mitigate the burden of health care worker (HCW) infection. We investigate the burden of HCW illness and its associated direct health care personnel costs in the setting of widespread vaccine availability and explore factors influencing these outcomes. Methods This multicenter prospective study followed HCWs over an 8-month period from January to August 2023. Data recorded included incident COVID-19 infection, symptom burden, workdays missed, and vaccine history. Workdays lost due to illness were used to calculate direct health care personnel costs due to COVID-19 infection. Univariate analysis and multivariable regression investigated the factors associated with workdays lost and direct health care personnel. Results In total, 1218 participants were enrolled and followed for 8 months, with 266 incidents of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, 1191 workdays lost, and health care personnel costs of €397 974. Multivariable regression revealed that workdays lost were associated with incomplete primary COVID-19 vaccination course. Being unvaccinated, older age, and male were associated with increased health care personnel costs. Conclusions Health care workdays lost remain a significant issue and are associated with health care system burden despite vaccine availability. These can be mitigated via targeted implementation of vaccine programs. Seasonal variation in health care workdays lost should inform workforce planning to accommodate surge periods. [ABSTRACT FROM AUTHOR]

AbstractObjectiveMethodsResultsConclusionsThis study aimed to evaluate physician–patient alignment on menopausal symptom burden and impact for women experiencing natural vasomotor symptoms (nVMS) or VMS induced by endocrine therapy for breast cancer (iVMS).For this real-world, cross-sectional survey, physicians from the USA and five European countries provided data for consulting patients experiencing nVMS/iVMS; patients optionally self-reported their experiences. Alignment between physician and patient responses was assessed using weighted Cohen’s κ analysis.Physicians and patients completed 1029 pairs of surveys (846 nVMS; 183 iVMS). In 28.1% of cases for nVMS and 29.6% for iVMS, patients reported more severe vasomotor symptoms (VMS) than physicians; alignment of responses was slight (nVMS, κ = 0.1364, p ≤ 0.0001; iVMS, κ = 0.1014, p = 0.039). For the non-VMS symptoms surveyed, 18.5–34.9% of patients with nVMS and iVMS reported symptoms without a corresponding physician report; sleep disturbances, cognitive difficulties and mood changes were among the symptoms most under-reported by physicians. Alignment regarding the impact of nVMS and iVMS on sleep, mood and overall quality of life was moderate.Only slight to moderate physician–patient alignment was found across all areas surveyed. These findings suggest that physicians often underestimate the severity of VMS and the presence of other menopausal symptoms, highlighting a need to improve physician–patient communication. [ABSTRACT FROM AUTHOR]

Background: Atrial fibrillation (AF) represents a global epidemic. Although international AF practice guidelines indicate weight loss for patients with AF and comorbid obesity (BMI ≥ 30 kg/m2) to alleviate symptom burden and improve prognosis, few cardiac rehabilitation (CR) programs include targeted weight loss treatment. Aims: This RCT protocol will evaluate the efficacy of a "Small Changes" behavioral weight loss treatment (BWLT) to produce clinically relevant (≥ 10%) weight loss among patients with AF and obesity undergoing CR, relative to CR alone. Secondary aims are to establish efficacy of CR + BWLT for improving AF symptoms, AF risk factors, and health-related quality of life. Methods: Adults (18 +) with AF and obesity will be recruited and randomized to receive CR + BWLT (intervention) or CR-only (control). Controls will receive CR consisting of supervised exercise and risk factor self-management for 12 weeks. The intervention group will receive CR plus BWLT (12 weekly, group-based virtual sessions, followed by 12 weeks of follow-up support). Weight and AF-risk factors will be assessed at pre-randomization, 12 weeks, 24 weeks, and 52 weeks. AF burden will be assessed using 30-s ECGs recorded bidaily and with AF symptoms. The primary endpoint of weight loss will be calculated from baseline to 52 weeks as a percentage of starting weight. Intention-to-treat analyses will compare the proportion in each group achieving ≥ 10% weight loss. Assuming success rates of 5% and 30% among controls and intervention groups, respectively, and a 30% loss to follow-up, 120 patients (60 per group) will provide 80% power to detect a difference using a two-sided independent test of proportions (alpha = 5%). Impact: This clinical trial will be the first to demonstrate that adding BWLT to CR promotes clinically meaningful weight loss among patients with AF and comorbid obesity. Findings will inform design and execution of a large efficacy trial of long-term (e.g., 5-year) clinical endpoints (e.g., AF severity, mortality). Implementing weight control interventions designed to target the AF substrate in CR could dramatically reduce morbidity and enhance quality of life among patients living with AF in Canada. Trial registration: ClinicalTrials.gov registration number: NCT05600829. Registered October 31, 2022. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Myeloproliferative neoplasms are stem cell–driven cancers associated with a large burden of morbidity and mortality. Most patients present with early-stage disease, but a substantial proportion progress to myelofibrosis or secondary leukemia, advanced cancers with a poor prognosis and high symptom burden. Currently, it remains difficult to predict progression, and therapies that reliably prevent or reverse fibrosis are lacking. A major bottleneck to the discovery of disease-modifying therapies has been an incomplete understanding of the interplay between perturbed cellular and molecular states. Several cell types have individually been implicated, but a comprehensive analysis of myelofibrotic bone marrow is lacking. We therefore mapped the cross-talk between bone marrow cell types in myelofibrotic bone marrow. We found that inflammation and fibrosis are orchestrated by a "quartet" of immune and stromal cell lineages, with basophils and mast cells creating a TNF signaling hub, communicating with megakaryocytes, mesenchymal stromal cells, and proinflammatory fibroblasts. We identified the β-galactoside–binding protein galectin-1 as a biomarker of progression to myelofibrosis and poor survival in multiple patient cohorts and as a promising therapeutic target, with reduced myeloproliferation and fibrosis in vitro and in vivo and improved survival after galectin-1 inhibition. In human bone marrow organoids, TNF increased galectin-1 expression, suggesting a feedback loop wherein the proinflammatory myeloproliferative neoplasm clone creates a self-reinforcing niche, fueling progression to advanced disease. This study provides a resource for studying hematopoietic cell–niche interactions, with relevance for cancer-associated inflammation and disorders of tissue fibrosis. Editor's summary: Myeloproliferative neoplasms can transition to advanced cancers with poor prognosis. Predicting progression and reversing the associated myelofibrosis remain difficult. Li, Colombo, and Wang et al. present a mouse cancer-stroma interactome for myelofibrosis and show that galectin-1 is a potential inflammation-related target for treating disease. Mesenchymal stem cells, eosinophils, basophils, and mast cells were each implicated in an inflammatory niche that drove myelofibrosis progression. Inhibiting galectin-1 with a monoclonal antibody in a mouse model of myeloproliferative neoplasm decreased fibrosis and cell proliferation and had a beneficial effect on survival. Galectin-1 was associated with myelofibrosis and poor survival in multiple human cohorts. These results suggest that galectin-1 may be a target to alter the inflammatory niche and to reduce fibrosis in myeloproliferative neoplasms. —Brandon Berry [ABSTRACT FROM AUTHOR]

Objective: The study aimed to examine the relationship between preoperative nutritional status, symptom burden, and the occurrence of postoperative atrial fibrillation in Esophageal Squamous Cell Carcinoma patients. Methods: The study, conducted in the Department of Thoracic Surgery at the Affiliated Huai'an No. 1 People's Hospital of Nanjing Medical University, applied the NRS 2002, SGA and MSAS scoring systems as measures of nutritional status and symptom occurrence in patients diagnosed with ESCC. Univariate and multivariate logistic regression analysis were performed to evaluate the association between nutritional scores, symptom scores, and postoperative complications. Results: The research found a significant correlation between high MSAS scores and postoperative atrial fibrillation. Patients with high symptom burden also tended to have nutritional risk or malnutrition according to the NRS2002 and SGA scores. Conclusion: There is a need for healthcare providers to pay attention to ESCC patients' physical and psychological symptoms. Close monitoring of nutritional status and timely nutritional interventions should be integrated into these patients' care plans as they have been found to be related to postoperative complications such as atrial fibrillation. [ABSTRACT FROM AUTHOR]

Background Aim Methods Results Conclusions Alpha‐synuclein (αSyn) is critical to the pathogenesis of Parkinson's disease (PD). Recognition of non‐motor symptoms as clinical manifestations of PD suggests aggregation of αSyn in extranigral areas.This study aimed to evaluate the association between total αSyn levels in reflex tears with non‐motor symptoms.This cross‐sectional study included 25 people living with PD (PwP) and 38 age‐matched healthy controls (HC). Total αSyn reflex tear levels were measured using an enzyme‐linked immunosorbent assay. PwP were evaluated using the Non‐Motor Symptoms Scale (NMSS), the Movement Disorders Society Unified Parkinson's Disease Rating Scale (MDS‐UPDRS), Hoehn and Yahr Stage (HY), and Montreal Cognitive Assessment (MoCA).Total αSyn reflex tear levels were significantly higher in PwP when compared with HC (1.77 pg/mL [IQR 1.75–1.79] vs. 1.73 pg/mL [IQR 1.70–1.75], p < 0.001). The urinary domain was negatively correlated with total αSyn levels in tears (r = −0.416, p = 0.048). No correlation was observed between total αSyn levels in reflex tears with MDS‐UPDRS, HY, or MoCA.Total αSyn levels in reflex tears can differentiate PD from HC. In addition, total αSyn reflex tear levels were associated with the urinary domain of NMSS but are not associated with motor and cognitive symptoms, nor HY. Therefore, our findings suggest that it does not reflect ongoing dopaminergic neurodegeneration. [ABSTRACT FROM AUTHOR]

Pancreatic cancer is a complex malignancy associated with poor prognosis and high symptom burden. Optimal patient care relies on the integration of various sectors in the healthcare field as well as innovation through research. The Canadian National Pancreas Conference (NPC) was co-organized and hosted by Craig's Cause Pancreatic Cancer Society and The Royal College of Physicians and Surgeons in November 2023 in Montreal, Canada. The conference sought to bridge the gap between Canadian healthcare providers and researchers who share the common goal of improving the prognosis, quality of life, and survival for patients with pancreatic cancer. The accredited event featured discussion topics including diagnosis and screening, value-based and palliative care, pancreatic enzyme replacement therapy, cancer-reducing treatment, and an overview of the current management landscape. The present article reviews the NPC sessions and discusses the presented content with respect to the current literature. [ABSTRACT FROM AUTHOR]

(1) Background: Clinical aspects like sex, age, Karnofsky Performance Scale (KPS) and psychosocial distress can affect the health-related quality of life (HR-QoL) and treatment satisfaction of patients with malignant isocitrate dehydrogenase wild-type (IDHwt) gliomas and caregivers. (2) Methods: We prospectively investigated the HR-QoL and patient/caregiver treatment satisfaction in a cross-sectional study with univariable and multiple regression analyses. Questionnaires were applied to investigate the HR-QoL (EORTC QLQ-C30, QLQ-BN20) and treatment satisfaction (EORTC PATSAT-C33). (3) Results: A cohort of 61 patients was investigated. A higher KPS was significantly associated with a better HR-QoL regarding the functional scales of the EORTC QLQ-C30 (p < 0.004) and a lower symptom burden regarding the EORTC QLQ-BN20 (p < 0.001). The patient treatment satisfaction was significantly poorer in the patients older than 60 years in the domain of family involvement (p = 0.010). None of the investigated aspects showed a significant impact on the treatment satisfaction of caregivers. (4) Conclusions: We demonstrated that in patients with IDHwt gliomas, the KPS was the most important predictor for a better HR-QoL in functional domains. Data on the HR-QoL and treatment satisfaction in patients with IDHwt gliomas and their caregivers are rare; therefore, further efforts should be made to improve supportive care in this highly distressed cohort. [ABSTRACT FROM AUTHOR]

Lung cancer patients suffer from numerous symptoms that impact their quality of life. This study aims to identify the symptom burden on quality of life in lung cancer patients. This survey used a structured questionnaire to collect data from 8 March 2021 to 12 May 2021. Patient demographic information was collected. The data on symptom burden and quality of life (QOL) of patients were obtained from the QLQ-C30 and the QLQ-LC13. The stepwise multiple regression analysis was used to estimate lung cancer-related symptom burden in relation to quality of life. The study included 159 patients with lung cancer who completed the questionnaire. The mean age of the patients was 63.12 ± 11.4 years, and 64.8% of them were female. The Global Quality of Life score of the QLQ-C30 was 67.87 ± 22.24, and the top five lung cancer-related symptoms were insomnia, dyspnea, and fatigue from the QLQ-C30, and coughing and dyspnea from the QLQ-LC13. The multiple regression analysis showed that appetite loss was the most frequently associated factor for global QOL (β = −0.32; adjusted R2: 27%) and cognitive function (β = −0.15; adjusted R2: 11%), while fatigue was associated with role function (β = −0.35; adjusted R2: 43%), emotional function (β = −0.26; adjusted R2: 9%), and social function (β = −0.26; adjusted R2: 27%). Dyspnea was associated with physical function (β = −0.45; adjusted R2: 42%). Appetite loss, fatigue, and dyspnea were the main reasons causing symptom burdens on quality of life for lung cancer patients. Decreasing these symptoms can improve the quality of life and survival for patients with lung cancer. [ABSTRACT FROM AUTHOR]

Appetite loss is prevalent in patients with advanced cancer and negatively affects their quality of life. However, understanding of the factors associated with appetite loss is limited. The current study aims to explore characteristics and therapeutic interventions used for patients with and without appetite loss admitted to an acute palliative care unit. Patient characteristics and patient-reported outcome measures (PROMs), using the 11-point numeric rating scale (NRS 0–10), were registered. Descriptive statistics, independent samples T-tests and chi-square tests were utilized for data analysis. Of the 167 patients included in the analysis, 62% (104) had moderate to severe appetite loss at admission, whereof 63% (66) improved their appetite during their hospital stay. At admission, there was a significant association between appetite loss and having gastrointestinal cancer, living alone, poor performance status and withdrawn anticancer treatment. Patients with appetite loss also experienced more nausea, depression, fatigue, dyspnea and anxiety. In patients with improved appetite during hospitalization, mean decrease in NRS was 3.4 (standard error (SE) 0.27). Additionally, patients living alone were more likely to improve their appetite. Appetite improvement frequently coincided with alleviation of fatigue. Understanding these associations may help in developing better interventions for managing appetite loss in patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Background: Social comparison, the process of evaluating one's characteristics in relation to others, influences individuals' self‐perception and behavior. However, instruments are scarce for assessing social comparison in the medical setting. Objectives: Our aim was to develop and validate a new scale for assessing social comparison. Materials and methods: Seven statements were developed, encompassing the perceived normality of having rashes, the tendency to compare their situation with others, and the emotional response when seeing someone better or worse off than themselves. The instrument was piloted in 15 patients for readability and face validity, then prospectively validated using modern psychometric methods in 1,053 adult patients with eczema or psoriasis from three tertiary dermatological centers in Singapore. Results: Of 1,053 adult patients, 802 (76.2%) had eczema, and 251 (23.8%) had psoriasis. Exploratory factor analysis (using a 70% sample split) showed a single factor model comprising three questions (Eigenvalue: 1.4). Confirmatory factor analysis with the remaining 30% of the sample confirmed an excellent model fit. Cronbach's alpha was 0.7, and inter‐item correlations ranged from 0.42 to 0.46. In the Rasch analysis, item fit statistics and item characteristic curves showed appropriate discrimination between response options, although reliability was suboptimal with a person separation reliability of 0.63. Conclusions: Comprising 3 questions, the newly derived social comparison scale showed acceptable psychometrics as a measure of social comparison for clinical and research purposes in dermatology. Its brief nature likely results from its brevity and applicability to conditions beyond eczema and psoriasis, which warrants further investigation. [ABSTRACT FROM AUTHOR]

Background: Tetralogy of Fallot with an absent pulmonary valve is a very rare variant of tetralogy. It is characterized by absent valve tissue, severe pulmonary regurgitation, and secondary aneurysmal dilatation of the pulmonary arteries. Aim: In this study, we aim to investigate the clinical presentations, management strategies, and outcomes of patients with tetralogy of Fallot and absent pulmonary valve. Methodology: We retrospectively reviewed the charts of all patients who presented to the American University of Beirut Medical Center between January 2010 and December 2020 and who were diagnosed with this anomaly. Results: A total of 300 cases of tetralogy of Fallot were identified, of which 18 patients had absent pulmonary valves. They were followed up for an average of 8.2 years. Prenatal diagnoses were made in four patients, while 13 patients were identified in the neonatal period, with an average age of 4.5 days. Genetic testing confirmed DiGeorge syndrome in one patient. Five patients underwent surgical intervention in the neonatal period, while the remaining patients were operated on during their early childhood. While overall there were no surgical mortalities nor any need for reinterventions, a variety of morbidities were encountered. Conclusion: This study provides an overview of this rare anomaly and its management in a developing country. [ABSTRACT FROM AUTHOR]

Background: Interindividual variability in oncology patients' symptom experiences poses significant challenges in prioritizing symptoms for targeted intervention(s). In this study, computational approaches were used to unbiasedly characterize the heterogeneity of the symptom experience of oncology patients to elucidate symptom patterns and drivers of symptom burden. Methods: Severity ratings for 32 symptoms on the Memorial Symptom Assessment Scale from 3088 oncology patients were analyzed. Gaussian Graphical Model symptom networks were constructed for the entire cohort and patient subgroups identified through unsupervised clustering of symptom co‐severity patterns. Network characteristics were analyzed and compared using permutation‐based statistical tests. Differences in demographic and clinical characteristics between subgroups were assessed using multinomial logistic regression. Results: Network analysis of the entire cohort revealed three symptom clusters: constitutional, gastrointestinal‐epithelial, and psychological. Lack of energy was identified as central to the network which suggests that it plays a pivotal role in patients' overall symptom experience. Unsupervised clustering of patients based on shared symptom co‐severity patterns identified six patient subgroups with distinct symptom patterns and demographic and clinical characteristics. The centrality of individual symptoms across the subgroup networks differed which suggests that different symptoms need to be prioritized for treatment within each subgroup. Age, treatment status, and performance status were the strongest determinants of subgroup membership. Conclusions: Computational approaches that combine unbiased stratification of patients and in‐depth modeling of symptom relationships can capture the heterogeneity in patients' symptom experiences. When validated, the core symptoms for each of the subgroups and the associated clinical determinants may inform precision‐based symptom management. [ABSTRACT FROM AUTHOR]

Simple Summary: In the radio-oncological treatment of patients with prostate cancer, there are significant differences in therapy tolerance due to risk factors, previous illnesses, and pre-treatment of the prostate. Patients with previous prostate surgery (TURP or ThuLEP) are a significant risk group in prostate cancer treatment and differ from non-operated patients in terms of quality of life. Patients who underwent transurethral prostate resection (TURP) exhibited greater overall quality of life impairment immediately after radiotherapy compared to those who had transurethral laser enucleation (ThuLEP) or no surgery. Operation time and radiation technique are important factors regarding therapy tolerance. In our study, the post-radiotherapy quality of life of prostate cancer patients who previously underwent transurethral resection of the prostate (TURP) is compared to those who had thulium laser enucleation of the prostate (ThuLEP) and those who had no prior surgery. It also aims to identify and assess risk factors affecting therapy tolerance in this patient group. We analyzed 132 patients with localized prostate cancer treated with definitive radiotherapy (RT), including 23 who had prior TURP and 19 who previously underwent ThuLEP. A total of 62% of patients underwent irradiation within 12 months after surgery. We included only patients treated with radiotherapy using the IMRT technique. Changes in patient-reported urinary toxicity were evaluated using the International Prostate Syndrome Score (IPSS) and the quality of life index of the World Health Organization (QoL/WHO-PSS) over a three-year post-radiotherapy period. Patients with prior TURP experienced significant deterioration in QoL and IPSS immediately after irradiation (p < 0.001), whereas those without previous surgery showed both less significant differences in IPSS and QoL scores. In conclusion, patients with previous TURP/ThuLEP differ from those without previous surgery in urinary quality of life and acute and chronic urinary symptom profiles after RT. The surgical technique (ThuLEP vs. TURP) and the time interval to irradiation are crucial factors affecting RT tolerance in acute and late settings. The previously operated patient group reported a significantly longer period of increased symptom burden. [ABSTRACT FROM AUTHOR]

Vasomotor symptoms (VMS) are the hallmark of menopause and negatively affect a large proportion of women over many years. However, studies evaluating the overall impact of VMS are limited. This systematic review (SR) aimed to examine epidemiological, clinical, humanistic, and economic outcomes of VMS among perimenopausal women and among women aged ≥65 years in the US. A systematic search of the MEDLINE and Embase databases was conducted to identify observational studies (2010–2022) reporting on these populations. Data reporting outcomes of interest were extracted and analyzed descriptively. Of 7,613 studies identified, 34 met inclusion criteria, of which 30 reported on perimenopausal women and 4 reported on VMS in women aged ≥ 65 years. VMS and severe/moderate-to-severe VMS were reported by 48.4–70.6 percent and 13.0–63.1 percent, respectively, of perimenopausal women. Mean VMS duration was 2.6 years, and median duration ranged from 7.4 to 10.1 years among women with onset in early perimenopause and from 3.8 to 6.1 years among those with onset in late perimenopause. Among women aged ≥65 years, 20.9–45.1 percent reported VMS; 2.0 percent reported severe symptoms, and 17.6 percent reported moderate symptoms. No studies reported VMS frequency and duration or the economic or humanistic burden among women aged ≥65 years. In conclusion, high VMS frequency and severity were observed among perimenopausal women and women aged ≥65 years in the US in this SR, highlighting the need for (1) better management of VMS to reduce frequency and severity and (2) further research to clarify the impact of VMS on disease burden, quality of life, and economic impact. [ABSTRACT FROM AUTHOR]

Objectives Despite higher physical vulnerability to coronavirus disease 2019 (COVID-19), older adults reported less psychological stress than younger and midlife adults during the pandemic. However, little is known about age differences in stress within later life, and most COVID-19 studies have been cross-sectional. We examined weekly hassles exposure and severity trajectories and whether these trajectories differed by age, resilience factors (higher trait resilience and education), and vulnerability factors (identifying as a woman, being a person of color, and having chronic health conditions). Methods Community-dwelling adults aged 50+ in Oregon (M age = 71.1, standard deviation = 7.3; 74% women, 89% non-Hispanic White) completed weekly online surveys across 8 weeks (April 28–June 22, 2020) during the COVID-19 stay-at-home mandate. A 2-part model estimated how age, resilience, and vulnerability factors predicted weekly odds of any hassle exposure and level of severity. Results Across time, hassles exposure decreased and the rate of severity declined, but these patterns differed by age and other demographics. The old-old (estimated at age 78) remained stable in odds of any exposure, whereas the young-old (estimated at age 64) evidenced a J-shaped curve; age did not moderate the severity slopes. Furthermore, both resilience factors were associated with exposure trajectories, whereas vulnerability factors (race/ethnicity and chronic illness) were associated with levels of hassles severity. Discussion There were age differences in patterns of hassles during the COVID-19 pandemic. Furthermore, resilience and vulnerability factors also showed complex patterns, underscoring the need for future studies to focus on age differences in well-being in later life. [ABSTRACT FROM AUTHOR]

Objectives In recent decades, risk of job loss in America after age 50 has been high, potentially causing significant stress during the period preceding retirement. Yet no study has quantified the burden of clinically relevant depressive symptoms attributable to job loss in this age group over this period or identified the most vulnerable populations. Methods Participants aged 50+ in the Health and Retirement Study (recruited 1992–2016) who were employed and scored <5 on the Center for Epidemiologic Studies-Depression 8-item scale (CESD-8) at baseline (N  = 18,571) were followed for depressive symptoms until they first had CESD-8 ≥5 or died, or through the 2018 survey. Parametric g-formula analyses examined the difference in cumulative risk of having CESD-8 ≥5 if there had been no involuntary job loss compared to the observed scenario, adjusting for sex, race/ethnicity, age, and dynamic measures of recent marriage end (divorce or widowhood), having a working spouse, assets/debt, and health changes. Results We estimated that risk of CESD-8 ≥5 would have been 1.1% (95% confidence interval [0.55, 1.37]) lower if no involuntary job loss had occurred; job loss accounted for 11% of the total burden among those who lost a job. Stronger associations were observed for women (1.2% [0.7, 1.8] vs men 0.5% [0.2, 1.1]), White respondents (1.0% [0.6, 1.5] vs Black respondents 0.5% [−0.1, 1.4]), and those in the lowest quartile of baseline assets (1.1% [0.4, 1.9] vs wealthiest quartile 0.5% [−0.4, 0.9]). Discussion Involuntary job loss is associated with high depressive symptom burden in older persons, suggesting that screening and intervention soon after job loss may help mitigate depression. [ABSTRACT FROM AUTHOR]

Aims: The long-term effects of COVID-19 (Long COVID) include 19 symptoms ranging from mild to debilitating. We examined multidimensional correlates of Long COVID symptom burden. Methods: This study focused on participants who reported having had COVID in Spring 2023 (n = 656; 85% female, mean age = 55, 59% college). Participants were categorized into symptom-burden groups using Latent Profile Analysis of 19 Long-COVID symptoms. Measures included demographics; quality of life and well-being (QOL); and COVID-specific stressors. Bivariate and multivariate associations of symptom burden were examined. Results: A three-profile solution reflected low, medium, and high symptom burden, aligning with diagnosis confirmation and treatment by a healthcare provider. Higher symptom burden was associated with reporting more comorbidities; being unmarried, difficulty paying bills, being disabled from work, not having a college degree, younger age, higher body mass index, having had COVID multiple times, worse reported QOL, greater reported financial hardship and worry; maladaptive coping, and worse healthcare disruption, health/healthcare stress, racial-inequity stress, family-relationship problems, and social support. Multivariate modeling revealed that financial hardship, worry, risk-taking, comorbidities, health/healthcare stress, and younger age were risk factors for higher symptom burden, whereas social support and reducing substance use were protective factors. Conclusions: Long-COVID symptom burden is associated with substantial, modifiable social and behavioral factors. Most notably, financial hardship was associated with more than three times the risk of high versus low Long-COVID symptom burden. These findings suggest the need for multi-pronged support in the absence of a cure, such as symptom palliation, telehealth, social services, and psychosocial support. [ABSTRACT FROM AUTHOR]

Patients with myeloproliferative neoplasms (MPNs) face chronic symptom burden. Online symptom assessment studies allow for recruitment of large numbers of motivated patients, but patient self-selection can lead to sampling bias. This study evaluated how gender representativeness in MPN symptom surveys and trials impacted symptom score mean estimates, using data from 4825 survey respondents and 291 trial participants with MPNs. The survey data showed that men participated at a rate roughly 50% less than what would be expected based on prevalence, and women reported higher scores than men on average for six of 10 symptoms. Together, this led to potential over estimation in six of 10 symptom score means (ranging from 5.8% to 15.3% overestimated). The trial data showed less gender-based sampling bias compared to the survey data. Studies utilizing online symptom surveys should implement study design features to recruit more men, assess for gender participation imbalances, and provide weighted estimates where appropriate. [ABSTRACT FROM AUTHOR]

Background and objectives: Non-polyglutamine CACNA1A variants underlie an extremely variable phenotypic spectrum encompassing developmental delay, hemiplegic migraine, epilepsy, psychiatric symptoms, episodic and chronic cerebellar signs. We provide our experience with the long-term follow-up of CACNA1A patients and their response to interval therapy. Methods: Patients with genetically confirmed non-polyglutamine CACNA1A disease were prospectively followed at the Center for Rare Movement Disorders of the Medical University of Innsbruck from 2004 to 2024. Results: We recruited 41 subjects with non-polyglutamine CACNA1A disease, of which 38 (93%) familial cases. The mean age at the first examination was 35 ± 22 years. Disease onset was in the childhood/adolescence in 31/41 patients (76%). Developmental delay and episodic symptoms were the first disease manifestation in 9/41 (22%) and 32/41 (78%) patients respectively. Chronic neurological signs encompassed a cerebellar syndrome in 35/41 (85%), which showed almost no progression during the observation period, as well as cognitive deficits in 9/20 (45%, MOCA test score < 26), psychiatric and behavioral symptoms in 11/41(27%). Seizures occurred in two patients concomitant to severe hemiplegic migraine. At the last visit, 27/41 patients (66%) required an interval prophylaxis (including acetazolamide, flunarizine, 4-aminopyridine, topiramate), which was efficacious in reducing the frequency and severity of episodic symptoms in all cases. In one patient in his 70ies with progressively therapy resistant hemiplegic migraine, treatment with the anti-CGRP antibody galcanezumab successfully reduced the frequency of migraine days from 4 to 1/month. Conclusions: Non-polyglutamine CACNA1A disease show an evolving age-dependent presentation. Interval prophylaxis is effective in reducing the burden of episodic symptoms. [ABSTRACT FROM AUTHOR]

Background: Prior studies have established an association between a history of abuse and more severe migraine presentation. Objectives: This cross‐sectional, observational study of a clinic‐based migraine population used validated measures to elucidate migraine‐specific and migraine‐related burdens among patients with a history of abuse. Methods: Patients with migraine (n = 866) from the American Registry for Migraine Research self‐reported if they had a history of emotional, physical, and/or sexual abuse and completed questionnaires assessing migraine‐related burden: Migraine Disability Assessment, Subjective Cognitive Impairment Scale for Migraine Attacks, Work Productivity and Activity Impairment, Patient‐Reported Outcomes Measurement Information System Pain Interference, Patient Health Questionnaire‐2, and Generalized Anxiety Disorder‐7. Migraine‐related burden in patients with versus without a history of abuse was compared. Subsequently, a mediation analysis evaluated the impact of depression and anxiety symptoms in the relationship between abuse history and migraine burden. Results: A history of abuse was reported by 36.5% (n = 316/866) of participants. After controlling for patient age, sex, years lived with headache, and headache frequency, a history of abuse was significantly associated with more severe migraine‐related disability. The combined burden of depression and anxiety symptoms mediated the relationship. Conclusion: A history of abuse is associated with greater migraine‐related disability. Future studies should determine if identification and management of the psychological and physical sequelae of abuse reduce migraine burden. Plain Language Summary: In this study, we found that patients with migraine who participated in the American Registry for Migraine Research and self‐reported a history of emotional, physical, or sexual abuse had worse migraine‐related burden than patients with migraine without a history of abuse. For example, patients who are survivors of abuse described a greater impact of migraine on their work, day‐to‐day living, and cognition. This increased migraine burden may be because of depression and anxiety, and we wonder if treating the underlying causes of these mental health difficulties might reduce their migraine burden. [ABSTRACT FROM AUTHOR]