BackgroundEndometriosis is a hormone-driven systemic inflammatory condition characterized by endometrial-like lesions which grow throughout the body affecting up to 15% of women worldwide with symptoms including chronic pain, infertility, and persistent fatigue. Many patients report a reduction in their quality of life, potentially driven in part by poor sleep quality. Despite this low sleep quality is not a commonly recognized symptom of endometriosis.ObjectiveWe aimed to examine the association between endometriosis and poor sleep quality.DesignWe conducted a systematic literature review and mixed-effects meta-analysis to evaluate the association between endometriosis and sleep quality.Data sources and methodsSix studies identified through PubMed and Embase met inclusion criteria and were assessed for quality. Between-group standardized mean differences (SMD) were pooled, and sensitivity analyses and meta-regressions were performed to evaluate the influence of between-study heterogeneity.ResultsPooling of all studies produced a standardized mean difference of 0.69 (95% CI: 0.28,1.09) with high heterogeneity (I2 = 94% p<0.01), which equates to a 2.44 (95%CI: 0.99; 3.85) point increase on the Pittsburg Sleep Quality Index (indicating poorer overall sleep quality) for endometriosis patients compared to healthy controls. This association persisted during sensitivity analyses.ConclusionThis observed association may be driven by a pain-sleep quality feedback loop or by the inflammation and hormonal imbalances of endometriosis. While there are several limitations to interpreting these results, including differences in control selections and adjustments for potential confounders between included studies, it is the first quantitative evaluation of the association between endometriosis and poor sleep quality across populations. Since sleep quality predicts chronic pain patterns, future research and patient treatment plans should focus on potential interventions to improve the sleep quality of endometriosis patients experience to reduce the societal and personal burdens of this disease. Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside of it, most often in the abdomen. It affects as many as one in seven women worldwide and can cause severe pain, fatigue, and infertility. Many people living with endometriosis also report problems with sleep, but poor sleep is not widely recognized as one of the condition’s symptoms or routinely studied by researchers. To better understand whether people with endometriosis experience worse sleep than those without the condition, we reviewed and combined the results of previous scientific studies that measured sleep quality in both groups. This process, called a systematic review and meta-analysis, helps summarize evidence from multiple studies to reach stronger conclusions. We identified six high-quality studies that met our inclusion criteria. When we analyzed them together, we found that people with endometriosis had significantly poorer sleep quality than those without it. On average, their scores on a standard sleep measure, the Pittsburgh Sleep Quality Index, were about 2.4 points higher, indicating worse overall sleep quality. This difference was consistent across several types of analyses, even though the studies varied in design and population. Our findings suggest that endometriosis may affect sleep through ongoing pain, inflammation, and hormonal changes, which can in turn worsen pain and fatigue, a cycle that may amplify the overall burden of the disease. Because good sleep is essential for physical and emotional well-being, these results highlight the need for more research on how endometriosis disrupts sleep and how improving sleep might reduce pain and improve quality of life for patients. Recognizing poor sleep as a common and meaningful symptom could lead to more holistic care for people living with endometriosis.
Daytime sleepiness and fatigue are common, yet hard to distinguish in depression. Sleepiness often reflects homeostatic sleep need caused by insufficient/disrupted sleep, and detection is critical for tailoring sleep-focused treatment in depression. However, misattributing fatigue to sleepiness is common on self-report, and terms like sleepy and tired are used interchangeably. The Pupillary Unrest Index (PUI) from the Pupil Sleepiness test (PST) is an objective measure of alertness that may help detect sleepiness due to insufficient/disrupted sleep. Currently, data linking the PUI to recent sleep behavior are limited and no study has examined these associations in depression. In a sample with varying levels of seasonal depression disorder (SAD) symptoms, we hypothesized that actigraphic sleep behaviors (duration, wake after sleep onset, sleep latency, efficiency, awakenings) would be associated with the PUI, and these associations would be stronger than those with self-reported sleepiness. We recruited 46 participants ranging from no history of depression through severe SAD. Assessments included the PUI, actigraphy 1-3 nights before the PUI, and self-reported sleepiness and fatigue. The PUI was not associated with SAD severity, fatigue, or self-reported sleepiness, whereas higher self-reported sleepiness was associated with higher SAD severity and fatigue. Longer sleep duration across 1-3 cumulative nights of sleep was associated with lower PUI. Shorter prior-night sleep latency was associated with higher next-day PUI. Both sleep duration and sleep latency were stronger predictors of the PUI than self-reported sleepiness. Results suggest the PUI can detect sleepiness associated with recent prior sleep behaviors, and diverges from SAD symptomology.
Mobile health (mHealth) apps are useful tools for research and disease management. However, implementation of mHealth apps is lacking in many areas. While mHealth apps offer various advantages to researchers and patients, their effectiveness depends on their actual use. Barriers to using mHealth apps are often due to human factors such as usability or technology acceptance. Although prior studies have examined the acceptance of mHealth apps in patient treatment, the key factors driving or hindering the use of mHealth apps in research remain unclear. This study explores user perceptions of 2 mHealth apps in the setting of an observational technology evaluation study using the unified theory of acceptance and use of technology. We aim to evaluate the technology acceptance of these specific apps and to investigate challenges in choosing suitable mHealth apps in research. The apps were intended for data collection; no effect on health was expected. Patients with chronic diseases as well as healthy participants used a symptom tracking app and a cognitive test app over the course of 4 weeks within the feasibility study of the project "Identifying Digital Endpoints to Assess Fatigue, Sleep and Activities of Daily Living in Neurodegenerative Disorders and Immune-Mediated Inflammatory Diseases." Thereafter, 61 qualitative interviews were conducted, recorded, and transcribed. A qualitative content analysis using the unified theory of acceptance and use of technology was performed. An important aspect of motivation for participants was feedback on their health data and performance in the cognitive tests. Effort played a significant role in app use. Patients rated the apps as easy to use and quick. Using the app multiple times per day at fixed times was perceived as disruptive. Participants preferred using their own phone. Social influence as well as facilitating conditions played a lesser role in intention to use the apps. Data security was no concern for most participants. They stressed the importance of good relations with the study team. In choosing suitable apps, one size will certainly not fit all. For medical research, pretesting of all materials with the potential users is of utmost importance. If the positive effects of the app on users' health are not immediately apparent, other factors may motivate use, for example, feedback, gamification, adjustable functions, applicability on all smartphone operating systems, and good relations to the study team.
The impact of obstructive sleep apnea (OSA) on all-cause mortality needs further research as earlier data are inconclusive. Between 30 and 50% of patients with OSA have comorbid insomnia (COMISA), which may increase the risk of morbidity and mortality. The present study was aimed at investigating the association between OSA and COMISA and the subsequent risk of all-cause mortality in a cohort of patients recruited from a hospital sleep clinic setting. Between January 2016 and December 2018, 2401 patients with suspected OSA underwent standard respiratory polygraphy and were recruited in the present analysis. OSA was categorized according to the respiratory event index (REI). Insomnia diagnosis was assessed with the Bergen Insomnia Scale. All-cause mortality was the primary endpoint. Mean age was 49.6 ± 14.0 years, 68.8% were males, and 36.2% had OSA with REI ≥ 15, 49.5% insomnia, and 16.9% COMISA (comorbid insomnia and OSA with REI ≥ 15). A progressive increase in the risk of all-cause mortality was observed with increasing OSA severity (REI < 5; 5-14.9; 15-29.9; ≥ 30). In a multivariable Cox regression analysis, OSA (REI ≥ 15) was independently associated with all-cause mortality (HR 2.65; 95% CI 1.12-6.30, p = 0.027). This relative risk was further increased to threefold (HR 3.02; 95% CI 1.30-7.04, p = 0.010) when OSA was replaced by COMISA in the same model. This study demonstrates that OSA severity is an important determinant of long-term survival. Patients with moderate-to-severe OSA are at particularly increased risk, and the coexistence of insomnia appears to substantially amplify this risk. These findings underscore the prognostic significance of considering both sleep-disordered breathing and comorbid insomnia when assessing mortality risk in patients evaluated for OSA. Obstructive sleep apnea (OSA) is linked to cardiovascular disease, but its impact on mortality, especially when combined with insomnia (COMISA), remains underexplored. This study investigated the prognostic OSA severity and COMISA in a large cohort of 2401 patients with suspected OSA. Our findings showed that moderate to severe OSA significantly predicted all-cause mortality, independent of traditional risk factors. The presence of COMISA tripled this risk, highlighting a synergistic negative effect. These results emphasize the importance of recognizing COMISA as a distinct, high-risk phenotype. Future clinical practice should include systematic screening and treatment of both OSA and insomnia to improve survival outcomes in affected patients.
Insomnia symptoms and abnormal sleep durations adversely affect mental health and daily life, yet the complex relationships among individual symptoms remain understudied. There is a notable lack of item-level network analyses integrating the Insomnia Severity Index (ISI-7) with sleep duration categories. This study addressed this gap by using network analysis to identify central symptoms and assess gender differences within the insomnia-sleep duration structure. A cross-sectional study was conducted among 466 job-seeking graduates from two major public universities in Bangladesh. Insomnia symptoms were assessed using the validated Bangla ISI-7, and sleep duration was categorized according to National Sleep Foundation guidelines. Network analysis (EBICglasso) was used to estimate the symptom network, compute node centrality and predictability, and test network invariance by gender using Network Comparison Tests. Network analysis revealed a highly interconnected structure, with the strongest association between short and long sleep duration (regularized partial correlation = -0.80), which primarily reflects their mutually exclusive dummy coding rather than a substantive clinical antagonism. Dense positive connections were observed among ISI symptoms, especially between "distress caused by sleep difficulties" (ISI7) and "noticeability of sleep problem" (ISI6; edge weight = 0.48). Centrality analysis identified short sleep duration (strength = 1.26; predictability index = 0.69), ISI7 (strength = 1.20), and ISI6 (strength = 1.15) as the most central nodes. The network showed acceptable stability (CS-coefficient = 0.52). No statistically significant gender differences were found in network structure or centrality (global strength: males = 3.61, females = 3.56; p = 0.86), indicating structural invariance. These findings suggest that symptoms such as distress about sleep and short sleep duration may represent promising targets for future intervention research. Interventions focusing on these symptoms may help improve sleep health. Future research should utilize longitudinal designs and include broader mental health measures to better understand the dynamics of insomnia.
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects physical, social and emotional aspects of life for people living with HS (plwHS). Although many plwHS consider pain the most bothersome symptom, fatigue and sleep disturbance are underexplored in research and rarely discussed in clinical practice. This article shares perspectives from plwHS and people working with patients, including healthcare professionals (HCPs), from Europe and North America, on the impact of HS-related fatigue and sleep disturbance on quality of life (QoL). Fatigue was described as a debilitating symptom affecting QoL, with HCPs often noting that plwHS were unaware of the full impact of fatigue until treatment improved their HS symptoms. Sleep disturbance was mainly attributed to HS-related pain, pruritus and lesion drainage, with sleep deficits accumulating over time. The strain of HS impacted personal relationships, with plwHS expressing less interest in social interactions or intimate relationships, leading to feelings of guilt, failure, isolation and reduced self-esteem. Fatigue and sleep disturbance also affected work productivity, and consequently, career progression and financial stability. Recognizing the multifaceted HS symptoms, providing reasonable adjustments in the workplace, encouraging open dialogue with HCPs and measuring fatigue with a validated instrument could help improve QoL of plwHS.
Stimulant use disorders (StimUDs), including cocaine and methamphetamine use disorders, remain a major public health concern in the United States with no US Food and Drug Administration (FDA)-approved pharmacological treatments. The early recovery period following stimulant use is marked by sleep disturbances, heightened stress reactivity, and dysregulated reward processing, contributing to high rates of resumption of use. Evidence from animal and human studies supports the orexin neuropeptide system as a promising therapeutic target for minimizing these disruptive mechanisms. Suvorexant, an FDA-approved dual orexin receptor antagonist for insomnia, has previously been shown to improve sleep, reduce stress, and attenuate craving in the first-in-human study with non-treatment-seeking individuals with cocaine use disorder. The primary objective of this randomized open-label clinical trial is to evaluate the effects of suvorexant on sleep, stress, reward processing, and craving during early abstinence in treatment-seeking individuals with StimUD. This proof-of-concept trial represents the first mechanistic evaluation of suvorexant in a residential sample of individuals with StimUD. A total of 40 participants, recruited from a residential treatment facility, will be randomized (1:1) to either 7 days of nightly suvorexant (10 mg) or treatment as usual. Participants' sleep will be monitored using an activity tracker watch, and they will complete a sleep diary each night to confirm bedtimes and wake-up times. Participants in the suvorexant group will receive the study medication for 7 nights. On premedication and postmedication study days, participants will be transported to the Center for Neurobehavioral Research on Addiction to complete the study sessions. At both study sessions, participants will complete self-report and safety measures (safety measures for the suvorexant group only) followed by administration of a stress reactivity test and an electroencephalographic assessment. The study was funded in January 2025 and is currently ongoing. We began enrollment of the first participant prior to funding in July 2024. At the time of manuscript submission (September 2025), a total of 8 participants had been enrolled in the study toward the planned enrollment of 40 participants. This study is expected to conclude in January 2027. Findings from this study will provide initial evidence for the mechanisms involved in suvorexant for StimUD, with the long-term goal of repurposing orexin-based therapy to regulate neurobehavioral mechanisms and inform future medication development for StimUD.
With the intensification of global population aging, the incidence of depressive symptoms among older women has increased year by year, affecting their quality of life and physical and mental health. Therefore, investigating the impact of daytime napping behavior on depressive symptoms in older women, particularly the regulatory effects of napping on frailty status and inflammatory response, is of important clinical and public health significance. This study aims to explore the relationship between daytime napping behavior and depressive symptoms in older women, with a focus on the chain mediating roles of frailty status and C-reactive protein (CRP) between napping and depressive symptoms. This study used 5 waves of data from the China Health and Retirement Longitudinal Study (CHARLS), including 3755 female participants aged ≥45 years. First, descriptive statistics and difference analyses were used to summarize baseline characteristics of the participants. Second, Cox proportional hazards regression models were used to analyze the effects of napping habits and nap duration on depressive symptoms. To explore the biological mechanisms linking napping and depressive symptoms, path analysis was further conducted to examine the chain mediating roles of frailty status and CRP in the effect of napping on depressive symptoms. To control for potential confounding factors, all analyses were adjusted for multiple covariates, including age, education level, marital status, smoking, drinking, social participation, and physical exercise. Finally, subgroup analyses were conducted to further verify the moderating effects of different lifestyles on the impact of napping. Napping behavior was significantly associated with a lower risk of depressive symptoms, particularly among women with nap durations of 5 to 30 minutes, who had the lowest risk of depressive symptoms. Specifically, individuals with nap durations of 5 to 30 minutes had a lower risk of depressive symptoms (HR=0.750, 95% CI 0.637 to 0.883, P<0.001), whereas those with naps longer than 60 minutes did not show a significant reduction in depressive symptom risk (HR=0.934, 95% CI 0.811 to 1.076, P=0.347). Further path analysis showed that there is a total indirect effect between napping and depressive symptoms (β=-0.0219, P<0.05), and there is an overall effect between the two (β=-0.081, P<0.05), indicating that napping could indirectly alleviate depressive symptoms by slowing frailty progression and reducing CRP levels. Subgroup analysis showed that the protective effect of napping on depressive symptoms was more pronounced among women who did not smoke or drink, exercised regularly, and participated in social activities, suggesting that the psychological protective effect of napping depends on an individual's overall health behavior pattern. Daytime napping exerts a chain mediating effect on depressive symptoms in older women through frailty status and CRP levels. Moderate napping, especially short naps of 5 to 30 minutes, can effectively reduce the risk of depressive symptoms, and this effect may be achieved by improving physical function and alleviating frailty and inflammatory responses. 目的: 随着全球老龄化问题的加剧,老年女性抑郁症状的发病率逐年上升,影响其生活质量和身心健康。因此,研究午睡行为对老年女性抑郁症状的影响,特别是午睡对虚弱状态和炎症反应的调节作用,具有重要的临床和公共卫生意义。本研究旨在探讨午睡行为与老年女性抑郁症状的关系,重点分析虚弱状态和C反应蛋白(C-reactive protein,CRP)在午睡与抑郁症状之间的链式中介作用。方法: 采用中国健康与养老追踪调查(China Health and Retirement Longitudinal Study,CHARLS)的5期数据,涵盖3 755名年龄≥45岁的女性参与者。首先,通过描述性统计和差异性分析对参与者的基线特征进行整理。其次,采用Cox比例风险回归模型分析午睡习惯及午睡时长对抑郁症状的影响。为探讨午睡与抑郁症状之间的生物学机制,进一步使用路径分析方法,探索虚弱状态和CRP在午睡对抑郁症状影响中的链式中介作用。为排除潜在的混杂因素,所有分析均调整了年龄、教育程度、婚姻状况、吸烟、饮酒、社交、锻炼等多个协变量。最后,通过亚组分析进一步验证不同生活方式对午睡效应的调节作用。结果: 午睡习惯与较低的抑郁症状风险显著相关,尤其是午睡时长在5~30 min的女性群体,有抑郁症状的风险最低。具体而言,午睡时长为5~30 min的个体抑郁症状的风险较低(HR=0.750,95% CI 0.637~0.883,P<0.001),而午睡超过60 min的个体未能显著降低抑郁症状的风险(HR=0.934,95% CI 0.811~1.076,P=0.347)。进一步的路径分析表明,午睡与抑郁症状之间存在总间接效应(β=-0.0219,P<0.05),二者存在总体效应(β=-0.081,P<0.05),表明午睡能够通过减缓虚弱状态和降低CRP水平间接减轻抑郁症状。亚组分析显示,午睡对抑郁症状的保护作用在不吸烟、不饮酒、积极锻炼和参与社交活动的女性群体中更加显著,这表明午睡行为的心理保护作用依赖于个体的整体健康行为模式。结论: 午睡行为通过虚弱状态和CRP水平在老年女性抑郁症状中起链式中介作用。适度午睡,尤其是5~30 min的短时午睡,能有效降低抑郁症状的风险,且这一效应通过改善身体功能、减缓虚弱状态和炎症反应实现。.
This study examined how antihistamine properties of blood-brain barrier penetration, central H1 receptor binding, and sedative potential-relate to sleep quality, daytime sleepiness, cognitive failures, and functional impairment in adults managed in primary and community health settings, while accounting for sociodemographic, lifestyle, and stress-related factors. A cross-sectional study was conducted in primary care and community health settings using a questionnaire that contained the Pittsburgh Sleep Quality Index (PSQI), Epworth Sleepiness Scale (ESS), Cognitive Failures Questionnaire (CFQ), and Work and Social Adjustment Scale (WSAS). Antihistamine exposure was classified by blood-brain barrier penetration, central H1 receptor binding, and sedative potential. Multivariable regression analyses were used to identify factors associated with sleep, cognition, and functional outcomes. Of the 385 participants, 130 (33.8%) used first-generation antihistamines and 255 (66.2%) used second-generation agents. Of the used antihistamines, 130 (33.8%) were highly sedating, 26 (6.8%) moderately sedating, and 229 (59.5%) nonsedating. Multiple linear regression showed that fixed sleep schedules were associated with less poor sleep (PSQI, B = -0.62, P = .004), while recent stress was associated with worsened sleep quality (B = 0.96, P < .001). Daytime sleepiness (ESS) was significantly associated with higher stress (B = 1.38, P < .001), night-shift work (B = 1.26, P = .003), and sedative properties (B = -1.60, P < .001). Cognitive failures (CFQ) were associated with female sex (B = 4.67, P = .009), higher stress (B = 8.75, P < .001), night-shift work (B = 6.20, P < .001), and sedative properties (B = -5.84, P < .001). Functional impairment (WSAS) was significantly associated with stress (B = 4.43, P < .001), night-shift work (B = 2.62, P = .001), sedative properties (B = -3.21, P < .001), and symptom severity (B = 2.37, P < .001). Antihistamine effects on sleep and cognition appear to be shaped by both sedative properties and patient characteristics. These findings suggest that prescribing practices should consider both symptom control and potential impacts on sleep health, cognitive performance, and social functioning, while recognizing that causality cannot be inferred without objective assessments and longitudinal designs.
Slow-wave sleep (SWS; stage N3) is often reported as reduced in depression, yet variability across depressive phenotypes remains poorly characterised. This study aimed to determine whether N3 architecture-proportion, duration, and latency-identifies clinically distinct profiles in major depressive episode (MDE). Ninety-seven adults with MDE underwent overnight polysomnography. N3 metrics (latency, duration, % of total sleep period (TSP), % of total sleep time (TST)) were analysed both dimensionally (correlations with clinical measures) and categorically (reduced, normal, or increased N3). Backward stepwise logistic regression identified variables distinguishing N3 categories, and sensitivity analyses assessed psychotropic medication effects. Shorter N3 latency correlated with poorer subjective sleep quality and greater anxiety and depressive severity. Extremes of N3 (%TSP) carried clinical burden: increased N3% associated with earlier hospitalisation, younger age at first suicide attempt, and higher daytime sleepiness; reduced N3% related to more hospitalisations and depressive episodes. Categorical contrasts showed increased N3 duration linked to higher anxiety and depressive symptom severity, reduced N3 (%TST) predicted more hospitalisations, while increased N3 (%TST) aligned with greater seasonality and morning chronotype. Men exhibited higher %N3 TST than women; bipolar depression had lower N3 than unipolar depression. A five-factor model (episode count, chronotype, seasonality, age, sex) distinguished increased %N3 TST from normal levels (AUC = 0.863; sensitivity = 0.957; specificity = 0.714), explaining 30.8% of variance. Medication analyses revealed no major effects. N3 sleep is not a uniform biomarker in depression. Its proportion and duration delineate distinct, clinically meaningful profiles. Sleep-based stratification may guide precision care.
Fear of cancer recurrence (FCR) is prevalent among cancer survivors, affecting between 39% and 97% of patients. FCR is associated with impaired concentration, sleep disturbances, decreased quality of life, and increased psychological distress and health care use. To date, the literature lacks a review that summarizes the breadth of psychological interventions available for reducing fear of recurrence. This review aims to identify and summarize the evidence on psychological interventions for addressing FCR across all cancers. The Joanna Briggs Institute method for scoping reviews guided the processes, and we reported the review following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist. We searched 5 databases (CINAHL, PsycInfo, the Cochrane Central Register of Controlled Trials, Embase, and MEDLINE) and 2 gray literature sources (ProQuest Dissertations & Theses Global and the World Health Organization International Clinical Trials Registry). Eligible studies included adults (≥18 years) diagnosed with cancer and evaluated psychological interventions aimed at reducing FCR. Data extraction captured study characteristics, intervention details, outcome effectiveness, and follow-up durations. We synthesized the findings using descriptive summaries and narrative analysis. Overall, 5131 articles were screened, and 122 were included in this review; 48 (39.3%) involved patients with breast cancer, 47 (38.5%) focused on patients with multiple cancer types; over half of the studies (n=64, 52.5%) were randomized controlled trials. Only 28 (23%) studies explicitly reported the definition of FCR. Eighteen different measurement tools were used. Blended interventions (different combinations of cognitive behavioral therapy, mindfulness, acceptance and commitment therapy, and other strategies) formed the largest intervention category (n=38, 31.1%), followed by cognitive behavioral therapy interventions (n=26, 21.3%) and mindfulness-based interventions (n=24, 19.7%). Of the included studies, 104 (85.2%) demonstrated significant reductions in FCR. Most interventions were delivered face-to-face by disciplinary specialists (n=75, 61.5%), while some were delivered remotely (n=34, 27.9%), with the majority of these delivered via the website (n=18, 52.9%). Follow-up duration ranged from postintervention to 3 years. FCR has been the focus of an increasing number of studies since 2009, with the majority being randomized controlled trials. Most interventions are delivered face-to-face and rely on trained specialists. Most have had statistically significant results. However, the included studies demonstrated heterogeneity in terms of delivery, duration, and dose, requiring cautious interpretation of intervention effects. Future research should develop consistent guidelines to standardize the definition of FCR, the measurement tools used, and the timing of follow-up assessments. Long-term follow-up data are needed to evaluate the sustained effects.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an impairing chronic condition characterized by exhaustion and worsening symptoms following exertion, often accompanied by pain, sleep issues, and cognitive issues. Historically, ME/CFS was not considered to be linked to mortality, however, more recent studies have questioned this assumption. The National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation maintains a memorial list consisting of deceased individuals who had ME/CFS. This secondary qualitative thematic analysis analyzed 505 entries on the National CFIDS Foundation memorial list, inductively developing a codebook from the publicly available memorial records. Two coders independently coded each entry before meeting to develop themes that incorporated the understanding of each coder. Themes emerged within four societal levels: systemic neglect and institutional failure; clinical neglect and failures; social disconnection and advocacy; and personal burden and quality of life. Describing systemic neglect and institutional failure, entries recounted a lack of acknowledgement by health, insurance, and disability authorities, as well as a lack of investment in research and treatment of ME/CFS at the federal level. Negative healthcare experiences included misdiagnosis and misattribution of symptoms, dismissal, inadequate knowledge and experience with treating ME/CFS, and the recommendation of unhelpful treatments. The disbelief and misattribution by acquaintances described in the entries contributed to feelings of social isolation, leading some to turn to advocacy work and support groups. Entries also described the individual impact of the condition, including functional impairments, the impact of symptoms, management strategies, financial stress, and mental health symptoms. Some deaths were directly and indirectly attributed to ME/CFS by individuals with ME/CFS and their acquaintances. This analysis provides a glimpse of the lived experience as well as death of individuals with ME/CFS through the lens of acquaintances of the deceased, emphasizing the substantial impact of the condition.
Acute mountain sickness (AMS) poses a unique and formidable challenge to healthy personnel at high altitudes. This randomized controlled trial (RCT) protocol aimed to assess the effectiveness of Ayurvedic nutritional supplements in conjunction with a yoga protocol in reducing the incidence and severity of AMS among healthy personnel stationed in the challenging high-altitude landscapes of the western Himalayas. The proposed open-label, parallel-group RCT was conducted in apparently healthy individuals of any gender aged 18-50 years. The study was conducted at two distinct high-altitude stages within the western Himalayan region: stage I, situated at an elevation ranging from 9000 to 12,000 feet and stage II, spanning 12,000 to 15,000 feet. A total of 1660 participants (n=830 per stage) underwent random assignment in a 1:1 ratio to receive either the existing acclimatization schedule (AS) for high altitude (control group) or the Ayush intervention (Ayush group) in addition to the AS. The participants in the Ayush group received Ayurvedic nutritional supplements, including the Ayur-nutri kit (Ayush poshak yoga, 25 g, and Ayush cardiac care tea, 125 mL), twice daily, along with a yoga protocol (60 min daily) for 120 days. The primary outcome was the incidence of AMS, assessed using the 2018 Lake Louise Scoring System, and the proportion of participants with a Lake Louise Scoring System score of 6 or higher during the first 7 days from baseline. The secondary outcome measures included the proportion of participants with thromboembolic events; changes in coagulation and hemostasis activation markers and proinflammatory markers; and changes in self-reported negative emotional states (depression, anxiety, and stress), sleep quality, and overall quality of life (assessed through Depression Anxiety Stress Scale-21 items, Pittsburgh Sleep Quality Index, and 12-item short-form, respectively) on day 60 and day 120 from baseline. The study was funded in March 2023. The data collection was completed in December 2023. A total of 1660 participants were enrolled in the study. The analysis of the study data is in progress. The study outcomes are expected to be published by December 2026. This RCT was the first of its kind to explore the potential benefits of using Ayurvedic nutritional supplements and a yoga protocol in conjunction with the standard AS to reduce the occurrence and severity of AMS among healthy personnel. The outcomes of this trial can aid in better acclimatization and resilience among healthy personnel at high altitudes.
Life's Essential 8 (LE8) is a framework for assessing cardiovascular health (CVH). Individuals with sleep disorders face an elevated risk of cardiovascular disease (CVD). This study aims to investigate the prognostic value of the LE8 score in predicting mortality among individuals with sleep disorders. The prospective cohort study included 1606 adults (aged ≥ 20 years) diagnosed with sleep disorders from the National Health and Nutrition Examination Survey (NHANES) 2005-2014. LE8 scores were categorized into three groups: Low CVH (0-49), Moderate CVH (50-79), and High CVH (80-100). Kaplan-Meier survival curves were used to compare mortality across these groups. Weighted multivariable Cox proportional hazards models were employed to investigate the relationship between LE8 scores with all-cause and CVD mortality. The Boruta algorithm was applied for feature selection, and six machine learning (ML) algorithms were utilized to predict all-cause mortality. During a median follow-up of 103 months, 282 deaths occurred, including 66 CVD-related deaths. The weighted multivariable Cox models revealed that higher LE8 scores were significantly associated with a lower risk for both all-cause mortality (HR = 0.85, 95% CI, 0.73-0.99) and CVD mortality (HR = 0.72, 95% CI, 0.56-0.93). Among the evaluated ML algorithms, the Gradient Boosting Decision Tree (GBDT) model exhibited the highest area under the curve (AUC) for predicting all-cause mortality. Higher LE8 scores are independently associated with a decreased risk of all-cause and CVD mortality among patients with sleep disorders. These findings highlight the importance of optimizing overall CVH in the clinical management of sleep disorders.
Alzheimer's disease patients often experience cognitive decline during disease progression, impacting their quality of life. Photostimulation therapy, as a non-invasive neuromodulation method, has been increasingly used in the adjunctive management of Alzheimer's patients in recent years. Despite the increasing number of related studies, a systematic review and comprehensive evaluation are still lacking. This review systematically summarizes the current application of photostimulation therapy in Alzheimer's disease patients, outlines its implementation characteristics, outcome indicators, intervention effects and mechanisms of action in cognitive function intervention, and identifies evidence gaps in current research. Relevant studies were systematically retrieved from PubMed, Web of Science, Cochrane Library, Embase, CINAHL, CNKI, CBM, WanFang Database, and VIP Database from their inception to January 5, 2026. Data from the included literature were extracted and analyzed. A total of 21 studies were included. Photostimulation therapy primarily includes light stimulation, 40 Hz rhythm-related light stimulation, photobiological modulation and their combined therapies, as well as transcatheter intracranial laser therapy. This therapy has potential value in improving cognitive function or delaying cognitive decline and may affect sleep/rhythm and behavioral symptoms. Its potential mechanisms involve neural oscillation modulation, circadian rhythm reconstruction, and improvement of synaptic plasticity. However, existing evidence exhibits significant heterogeneity in study design, sample size, intervention parameters, and outcome indicators. Photostimulation therapy has shown promising potential in cognitive function intervention for Alzheimer's disease patients, but current evidence is still largely in the exploratory stage. Future research should focus on multi-center, large-sample, and standardized studies to determine the optimal parameter combinations for different stages and scenarios, and to optimize individualized intervention protocols to improve clinical efficacy. Investigates the effectiveness and limitations of photostimulation therapy in improving cognitive function in Alzheimer’s disease patients and summarizes its mechanisms of action. The results show that photostimulation therapy shows promising potential in improving cognitive function in Alzheimer’s patients, and its mechanism of action involves multiple aspects. However, existing evidence exhibits heterogeneity in terms of study design and sample size, necessitating future multi-center, large-sample, and standardized studies.
Ovarian cancer remains a significant global health concern. Contemporary therapeutics have led to an increased number of long-term survivors. This research investigates the unmet needs of long-term ovarian cancer survivors in Spain, focusing on persistent side effects, patient concerns, lifestyle changes, and ongoing challenges. This is a multi-center, cross-sectional, observational study, assessing the results from the international North-Eastern German Society of Gynecological Oncology survey, Expression VI - Long-term survival with ovarian cancer in Spain. Participants were identified during follow-up visits at oncology departments. A structured questionnaire of 68 items, including demographic, clinical, psychosocial, and lifestyle domains, was completed anonymously in printed format, with implied consent through survey completion. A total of 250 long-term ovarian cancer survivors from Spain, defined as patients diagnosed of malignant ovarian cancer with a survival ≥8 years since diagnosis (median age at diagnosis 52 years; median survival time 11 years), completed the survey. A substantial number of participants continued to experience long-term side effects, including gastrointestinal (90%), dermatologic (91.6%), and neurologic symptoms, such as memory problems (15.1%) and concentration difficulties (10.8%). Nearly half of the survivors (47.3%) expressed concerns about nervousness, 43.6% reported ongoing pain, and 40% struggled with sleep disturbances. Lifestyle changes after cancer diagnostic were significant, with 56.5% of smoker participants quitting or reducing smoking and 41.6% adopting healthier diets. Finally, our results indicate that most participants received some form of follow-up, primarily through blood biomarker monitoring (87.0%) and imaging tests (73.0%). This study highlights the persistent challenges among long-term ovarian cancer survivors in Spain, stressing the need for more comprehensive, tailored aftercare. These findings may be generalized to other regions, emphasizing the importance of addressing ongoing side effects and unmet care needs to improve survivors' long-term quality of life. Enhanced follow-up care, patient support, and effective communication are essential components of this effort.
Pulmonary arterial hypertension (PAH) is a progressive, life-altering disease that imposes profound physical, psychological, and economic burdens on patients and caregivers. Therapeutic advances over the past three decades, most recently the introduction of sotatercept, have improved survival and functional outcomes. Despite this, many of the most pressing needs remain unseen, particularly those related to health-related quality of life (HRQoL). Patients often face years of diagnostic delays, and once diagnosed, experience fragmented care delivered across subspecialties. Rural, minority, and low-income populations encounter disproportionate barriers to specialty access, underscoring the role of social determinants of health (SDoH) in shaping outcomes. Alongside these systemic barriers, patients report high rates of depression, anxiety, fatigue, and social isolation-burdens that are frequently underestimated in clinical practice. To better capture the lived experience of PAH, patient-reported outcome measures (PROMs) provide insights beyond hemodynamic and survival metrics. HRQoL instruments such as the SF-36, CAMPHOR, PAH-SYMPACT, and EmPHasis-10 demonstrate validity in identifying high-risk patients, measuring treatment effects, and predicting outcomes. Despite their promise, challenges such as unclear minimal clinically important differences (MCIDs), workflow barriers, and limited uptake have hindered widespread integration. In parallel, supportive and palliative care services remain underutilized, despite strong evidence that early adoption improves symptom control, communication, and quality of life. This state-of-the-art narrative review proposes a two-tier framework for understanding PAH-related burdens. Patient-level burdens-including psychological distress, functional limitations, and treatment burden-can be addressed through integrating PROMs, HRQoL instruments, palliative, and mental health care. System-level burdens-driven by SDoH, racial and ethnic inequities, geographic barriers, and insurance gaps-require policy reforms, telehealth expansion, community partnerships, and greater diversity in research and clinical trials. Future progress in PAH depends on aligning therapeutic advances with what matters most to patients. Embedding specific PROMs into risk stratification, establishing MCIDs, leveraging digital tools for longitudinal monitoring, and integrating multidisciplinary and palliative services into pulmonary hypertension (PH) clinics will advance patient-centered care. Simultaneously, addressing system-level inequities through policy, community, and research initiatives will ensure equitable access and outcomes. By moving beyond survival to encompass the full spectrum of lived experience, PAH care can evolve into a holistic, patient-centered model.
"Academic overdose (AO) leads to a state of mental and emotional saturation with constant academic input, to the point that learning and productivity decline and may lead to mental exhaustion and burnout, affecting quality of life (QOL)." Medical conferences (MC) are essential for knowledge dissemination, academic recognition, and professional transformation. This AO stems from the pressure to present research, networking, and demanding clinical and academic responsibilities. Adding to this are unlimited, exhaustive, and irritating queries from patients and attendants arising from internet searches. In recent years, the frequency of MCs and continuous medical educations (CMEs) has increased across local, national, and international levels. While this growth offers educational opportunities, it has also led to content redundancy, extended sessions, and a lack of audience engagement. The healthcare professionals (HCPs) have high academic expectations to be achieved in multiple domains, such as position, sustainability, promotions, and excellence in clinical practice; they also maintain scholarly, educational, and administrative responsibilities, and balancing these is highly challenging and may lead to emotional exhaustion and burnout, exacerbated by academic preparation for MC presentations. MCs have various advantages and disadvantages and require structural reforms to attract more participants and to be recognized as being of very high standards. Restructuring of MCs seems logical, and MCs must remain accessible, affordable, and academically oriented. MCs offer learning, innovations, professional networking, and knowledge and experience sharing, while at the same time needing to be more inclusive, ethical, cost-effective, and image-building opportunities. Associated risks of exhaustion, sleep deprivation, burnout, and financial constraint necessitate restructuring of MCs.
Acquired hypothalamic obesity (aHO) is a disease characterized by rapid, clinically significant, and persistent weight gain resulting from damage to hypothalamic structures. aHO is associated with substantial morbidity, increased mortality, and marked impairment in quality of life. Etiologies include craniopharyngioma and other space-occupying lesions of the sellar/parasellar region, neurosurgical procedures, cranial irradiation, and traumatic brain injury. A multidisciplinary panel comprising ten specialists in neuroendocrinology, neurooncology, and neurosurgery from Germany, Austria, and Switzerland convened in Frankfurt am Main, Germany, on November 10, 2025, to discuss contemporary challenges and advances in this field. aHO should be conceptualized and treated within the broader clinical entity of hypothalamic syndrome, a complex disorder involving multiple neuroendocrine deficiencies, disturbances of circadian regulation, impaired control of hunger, satiety, and thirst, altered thermoregulation, and a range of cognitive, sleep-related, and psychosocial dysfunctions. Long-term outcomes for affected individuals are frequently unfavorable, largely due to increased risks of metabolic syndrome, cardiovascular disease, profound reductions in health-related quality of life, and elevated rates of premature mortality. The management of hypothalamic syndrome remains particularly challenging. Pharmacological strategies, including dextroamphetamine and glucagon-like peptide-1 receptor agonists, have demonstrated potential benefits for weight and hyperphagia-related outcomes. Recently, preliminary findings from a prospective, randomized, placebo-controlled clinical trial (TRANSCEND) provided encouraging evidence for the efficacy of setmelanotide, a melanocortin-4 receptor agonist. This perspectives report reviews clinical advances in epidemiology, diagnostics, treatment, and follow-up of patients with aHO and outlines key directions for future research aimed at improving outcomes in this vulnerable population.
Quality of life (QoL) is an important surgical outcome, commonly assessed through self-reports, and has the potential to be enhanced by objective information from personal technologies such as smartphone apps and wearables. Understanding patients' perspectives on this application of personal technologies is scarce. This study aimed to identify operational aspects of smartphone- and wearable-based assessments, as well as human and operational factors that may influence the acceptability of already owned (mostly smartphone) or new (mostly wearable) technologies by patients for pre- and post-surgery QoL assessments. Through purposive sampling, 41 patients from 3 health care centers in Switzerland, the United States, and the United Kingdom, who were undergoing or scheduled for surgery for degenerative cervical myelopathy (DCM), liver transplantation, or total hip replacement, were interviewed about their perceptions of QoL, current use of smartphones, health apps, and wearables for self-management and their views on using these technologies to assess QoL before and after surgery. Across the 3 studies (n=41), most (n=36) patients reported improved QoL after surgery, mainly due to reduced pain and fatigue and regained autonomy, while a few patients with DCM reported no change (n=2) or worsening (n=1). Patients were generally comfortable using smartphones and tablets, but few (n=4) used them for health management. Wearables were perceived differently across groups: they were well accepted in transplant@US, moderately in hip@UK, and least in myelopathy@CH. Many patients with DCM found wearables "useless," believing they added little to their self-awareness or recovery and could not replace human clinical judgment. Others expressed concerns about privacy, complexity, notifications, and battery life, while some acknowledged their motivational value when the data were clearly interpreted. Despite varying acceptance levels, most participants said they would consider using such devices if they contributed to research or improved care. Given a mostly negative attitude of patients toward wearables, we discuss the use of smartphone-based automated logging of physical functioning (sleep and physical activity) instead. Such logging may be less accurate than a dedicated wearable, but it may be accurate enough to measure their pre- and post-surgery physical functioning changes. Additionally, a smartphone has the advantage of being already well integrated into the daily life of patients from the perspective of its functionality and the patients' routines, contrary to wearable devices, which would have been provided to the patients in the context of pre- and post-surgery clinical care and require additional attention for their continuous wear, charging, and data synchronization, among others.