Quality of life (QoL) encompasses the awareness of individuals' well-being in various aspects of their lives, including physical, personal, mental, and social domains. It is imperative to address QoL concerns in patients with brain tumors. The objective of this study is to assess the QoL among brain tumor patients treated a tertiary hospital in Saudi Arabia. A retrospective study conducted at a single academic institution in 2017 analyzed data from adult patients diagnosed with brain tumors who underwent craniotomy and resection procedures over a 10-year period (2007-2017). The assessment of QoL was conducted employing a translated Arabic questionnaire derived from the European Organization for Research and Treatment of Cancer (EORTC) standardized model (QLQ-C30). This model evaluates various domains, including global health, physical function, role functioning, emotional functioning, cognitive functioning, social functioning, and symptoms domain. Furthermore, the brain cancer model (BN20) was utilized to assess symptoms and evaluate all aspects of well-being. In this study, a total of 76 patients were included, with a median age of 46 years. No gender bias was observed. Meningioma was the most prevalent brain tumor in our study, comprising 40% of the cases, followed by glioma and other types. It is noteworthy that more than half (65%) of the brain tumor patients had a World Health Organization (WHO) grade I brain tumor, while 15% had grade II, and 20% had grades III or IV. Supratentorial was the most common location for brain tumors. In all types of brain tumors, particularly in patients who underwent resection of meningioma and glioma, the QoL scales and measurements of daily functioning consistently exhibited low scores. Better QoL scores were correlated with male gender, the location of the brain tumor, and the WHO tumor grade. Conversely, perioperative headache, drowsiness, neurological deficits, and low socioeconomic status were associated with poor QoL. Our study is the first study reported in Saudi Arabia to evaluate the quality of life of patients undergoing surgical procedures for brain tumors. We demonstrated that the QoL experienced by brain tumor patients consistently appeared to be poor, irrespective of the specific type of tumor. We underscore the paramount significance of evaluating the QoL of brain tumors within the Gulf and Middle East regions. To comprehensively evaluate the QoL of brain tumor patients globally, a substantial sample size and longitudinal or prospective studies are indispensable.
The 2023 iteration of the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) estimated prevalence, incidence, and health burden for 375 diseases and injuries, including 12 mental disorders. We assess past, current, and emerging trends in the prevalence and burden of mental disorders across sexes and age groups, for 21 regions, 204 countries and territories, and by Socio-demographic Index (SDI) quintile, from 1990 to 2023. Mental disorders included in GBD 2023 were anxiety disorders, major depressive disorder, dysthymia, bipolar disorder, schizophrenia, autism spectrum disorders, conduct disorder, attention-deficit hyperactivity disorder, anorexia nervosa, bulimia nervosa, idiopathic developmental intellectual disability, and a residual category of other mental disorders. A literature review identified epidemiological data for each disorder. These were analysed via a Bayesian meta-regression to estimate prevalence by disorder, sex, age, location, and year. Disorder-specific prevalence was multiplied by disability weights representing the severity of health loss associated with each disorder to estimate years lived with disability (YLDs). Deaths due to anorexia nervosa were assessed with a Cause of Death Ensemble modelling strategy to estimate deaths by sex, age, location, and year, and then multiplied by the standard life expectancy at age of death to estimate years of life lost (YLLs). YLDs equalled disability-adjusted life-years (DALYs) for all mental disorders except anorexia nervosa (the only mental disorder considered as an underlying cause of death in GBD), for which DALYs represented the sum of YLDs and YLLs. We presented prevalence, deaths, YLDs, YLLs, and DALYs as counts, age-specific rates per 100 000 population, and age-standardised rates per 100 000 population. We estimated 1·17 billion (95% uncertainty interval 1·06-1·31) prevalent cases of mental disorders globally in 2023, equivalent to an age-standardised prevalence rate of 14 210·7 cases (12 849·5-15 940·1) per 100 000 population. These estimates represented a 95·5% (75·0-121·2) increase in prevalent cases and 24·2% (11·4-41·4) increase in age-standardised prevalence rate between 1990 and 2023. All mental disorders showed increases in prevalent cases between 1990 and 2023, while notable increases were seen in age-standardised prevalence rates for anxiety disorders, major depressive disorder, dysthymia, anorexia nervosa, bulimia nervosa, schizophrenia, and conduct disorder. There were an estimated 171 million (127-228) DALYs due to mental disorders globally across sex and age in 2023, equivalent to an age-standardised DALY rate of 2070·5 DALYs (1519·1-2750·5) per 100 000 population. Mental disorders contributed to 6·1% (4·8-7·6) of all-cause DALYs in 2023, making them the fifth leading cause of global DALYs (up from 12th in 1990). DALYs were almost entirely composed of YLDs. Mental disorders were the leading cause of YLDs in 2023 (up from second in 1990), explaining 17·3% (14·8-20·6) of all-cause global YLDs. Leading causes of mental disorder DALYs were anxiety disorders (ranked 11th among the 304 diseases and injuries at Level 4 of the GBD cause hierarchy), major depressive disorder (15th), and schizophrenia (41st). Globally in 2023, mental disorder age-standardised DALY rates were higher among females (2239·6 [1643·7-3014·1] per 100 000) than among males (1900·2 [1399·8-2510·8] per 100 000), and peaked in the 15-19 years age group (2617·3 [1850·6-3696·8] per 100 000). All locations showed increased mental disorder DALY rates in 2023 compared with 1990, ranging across countries and territories from 1302·4 (952·7-1683·7) per 100 000 in Viet Nam to 3555·8 (2661·9-4715·0) per 100 000 in the Netherlands. Across SDI quintiles, DALY rates ranged from 1853·0 (1352·1-2469·3) per 100 000 for middle SDI to 2184·1 (1606·1-2890·3) per 100 000 for high SDI. A significant health burden was imposed by mental disorders in all countries and territories in 2023, irrespective of the health resources available. In some instances, this burden has increased over time and is unevenly distributed across populations. Stronger surveillance systems, particularly in low-income and middle-income countries, are required. Additionally, we need more coordinated and inclusive policies to reduce the burden through early treatment and prevention, tailored to sex and age differences across locations. Responding to the mental health needs of our global population, especially those most vulnerable, is an obligation, not a choice. Gates Foundation, Queensland Health, and University of Queensland.
Background and Objectives: Population ageing is a major challenge of the 21st century and is associated with declining physical and mental abilities, increased disease burden, and higher mortality. Latvia has the lowest healthy life expectancy in the European Union. Social well-being is an important component of healthy and active ageing and may be associated with older adults' quality of life (QoL). This study aimed to assess the relationship between social well-being, as a component of health, and QoL, including its components (control, autonomy, self-realisation and pleasure), among adults aged 50 and older in Latvia. Materials and Methods: Data from 1643 Latvian participants in wave 9 of the Survey of Health, Ageing, and Retirement in Europe (2022) were analysed using linear regression. QoL was measured using the 12-item Control, Autonomy, Self-Realisation, and Pleasure (CASP-12) scale. Social well-being factors included household composition, education, employment status, financial capacity, living area, social network (SN) characteristics, and received help, based on self-reported questionnaires. Results were considered statistically significant if the p-value was less than 0.05. Results: The factors positively associated with overall QoL were being employed, better financial capacity, greater satisfaction with SN, larger SN, participation in social activities, and higher educational attainment. Being employed and the ability to make ends meet easily were positively associated with all QoL components. Higher satisfaction with the SN and participation in social activities were positively related to the control, autonomy, pleasure, and self-realisation components. Conclusions: These findings underscore the importance of social and economic resources for QoL in later adulthood, suggesting that both the quality of social relationships and material security play a central role in shaping overall QoL and its components among older adults.
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.
This trial aims to evaluate the impact of the IMPROVA intervention programme in improving mental health, quality of life, and well-being in adolescents enrolled in secondary schools in four European countries. The IMPROVA intervention will be evaluated using a two-arm parallel group pragmatic cluster randomised controlled trial with an intervention and a wait-list control group. Secondary schools in France, Germany, Romania, and Spain were recruited. Originally, we estimated to enrol a total of 6000 students within 64 schools; that is, 16 schools per country. The IMPROVA programme is a multi-level intervention that provides tailored content for adolescents, families, and school staff. This content creates a unified and supportive framework that promotes mental health and social-emotional development among adolescents. A series of implementation strategies was planned to support the uptake of the programme into the education setting and among participants. Study outcomes were assessed at baseline, mid-term (during the intervention), postintervention (primary end point), and will be assessed at postintervention (secondary end-point; 6 months after postintervention). Overall mental health (Strengths and Difficulties Questionnaire) is the primary outcome. Secondary outcomes include: health-related quality of life, depression, anxiety, social isolation, and self-esteem. The trial will be evaluated regarding its effectiveness, cost-effectiveness, implementation, and social return on investment analysis. This study has received the approval of human research ethics committees in France (Comité de Protection des Personnes Ile-de-France VIII", No. 2024-A00201-46), Germany (Ulm University Ethics Committee, No. 186-24), Romania (The Research Ethics Subcommittee of the Babeș-Bolyai University of Cluj-Napoca, No. 14.146/23.09.2024), and Spain (CEIm Fundació Sant Joan de Déu, No. PIC-61-24). Results will be disseminated through peer-reviewed open-access publications and presentations at national and international conferences. Non-technical summaries will be shared with public health authorities, participants, and stakeholder organisations. All findings will be reported in aggregate form, ensuring no individual participant can be identified. NCT06556576.
Recent investigations have shown that the neural processing of linguistic content may interact with social cognition. Specifically, semantic processing, as reflected by the N400 event-related potential, appears to be sensitive to manipulations of Theory of Mind (ToM), the ability to attribute mental content to social partners. In this study, we labeled objects for 14-month-old infants either correctly or incorrectly (an N400 manipulation), ehiter in the presence or absence of an observer. We found that the N400 response was enhanced in the presence (relative to the absence) of the social partner, but only for the incongruent labels. ToM's role in language comprehension has long been proposed, but the outcome that ToM may impact not solely pragmatic but also semantic level computations-already at the developmental onset of the N400 response-may warrant a reevaluation of the functional organization of the language system. Although a large body of developmental research suggests that language may be a prerequisite for ToM, our findings raise the possibility that ToM may play a fundamental role in language acquisition. Linguistic content may be processed by a semantic system functioning mentalistically, recovering meaning as intended by communicative partners, which could hold the key to the rapid word learning of infants.
The same dataset can be analysed in different justifiable ways to answer the same research question, potentially challenging the robustness of empirical science1-3. In this crowd initiative, we investigated the degree to which research findings in the social and behavioural sciences are contingent on analysts' choices. We examined a stratified random sample of 100 studies published between 2009 and 2018, in which, for one claim per study, at least five reanalysts independently reanalysed the original data. The statistical appropriateness of the reanalyses was assessed in peer evaluations, and the robustness indicators were inspected along a range of research characteristics and study designs. We found that 34% of the independent reanalyses yielded the same result (within a tolerance region of ±0.05 Cohen's d) as the original report; with a four times broader tolerance region, this indicator increased to 57%. Of the reanalyses conducted, 74% reached the same conclusion as the original investigation, 24% yielded no effects or inconclusive results and 2% reported the opposite effect. This exploratory study indicates that the common single-path analyses in social and behavioural research should not be simply assumed to be robust to alternative analyses4. Therefore, we recommend the development and use of practices to explore and communicate this neglected source of uncertainty.
To assess material and social deprivation, mental health, and health-related quality of life (HRQoL) and their determinants among patients and accompanying persons attending a public hospital cardiology clinic in Athens, Greece. Cross-sectional study, conducted in 2024. Patients and accompanying persons aged over 30 years were included. Material and social deprivation were measured using the European Union Material and Social Deprivation Index. Participants self-reported sociodemographic and lifestyle characteristics, medical history, HRQoL, and mental health indicators. Analyses were guided by a hierarchical framework using univariate and multivariate logistic regression. Among 456 participants (59% female; 25% aged ≥65 years; 40% with ≤12 years of education), 46.3% experienced deprivation, including 28.5% with severe deprivation, almost double the national estimates for 2024. Lower educational attainment, older age, and unemployment were significant determinants of deprivation. Smoking, sleep duration, and presence of physical health conditions were independently associated with deprivation. Deprived individuals reported substantially worse HRQoL, higher depressive symptoms and clinically significant anxiety, and lower life satisfaction. Material and social deprivation was highly prevalent and closely linked to adverse sociodemographic and lifestyle characteristics, physical morbidity, and impaired mental health and HRQoL. Routine assessment of deprivation in clinical care and targeted support programs for vulnerable populations are warranted.
Quality of life (QoL) questionnaires are used in many disease areas to measure the burden that a disease causes for patients, which help provide insights into disease impact, identify unmet medical needs, and inform patient-centered drug development and value assessment for treatments. The collection of data imposes both a significant burden on patients as well as effort on health care personnel, thus incurring high costs for the health care system. Given that patients share detailed information about their condition and treatment experiences on social media and patient forums, an important research question is to what extent information about QoL can be obtained from patients' online forum posts to potentially complement information obtained from questionnaires. This study aimed to assess how much QoL information can be gained from the analysis of posts by patients in online health care communities and whether this information is rich enough to estimate individual patient's QoL based on their posts. We conducted this feasibility study in the context of breast cancer as it is the most prevalent cancer in the female population. We recruited 134 female patients diagnosed with breast cancer on the Inspire patient online forum, who voluntarily participated in our feasibility study. They filled in the EORTC (European Organisation for Research and Treatment of Cancer) QLQ-C30 and QLQ-BR23 questionnaires consisting of 30 general questions and 23 additional breast cancer-specific questions and provided consent to analyze their posts and comments on the online forum (756 posts and 19,478 comments). Posts were coded manually to identify parts of the text providing answers to 1 of the aforementioned 53 questions. The data annotation yielded a substantial agreement (mean Fleiss κ of 0.5, SD 0.28). Overall, we found answers in the coded data for 50 out of 53 EORTC QLQ-C30 and QLQ-BR23 questions. The information coded in the posts reliably predicted the answers given in the questionnaires (F1-score=0.7), with even better results when grouping similar questions (F1-score=0.8 for fine-grained and 0.9 for coarse-grained grouping). The 5 questions that were most frequently answered on the basis of the coded posts were "Did you feel ill or unwell?" (304 of 2683 annotated posts and comments), "Did you worry?" (105 posts and comments), "Have you had pain?" (104 posts and comments), "Did you feel tense?" (85 posts and comments), and "Were you limited in doing either your work or other daily activities?" (77 posts and comments). Our feasibility study shows that there is valuable QoL-related information in posts of online patient communities, which can potentially serve as an innovative low-burden QoL monitoring approach. Future research should consider how these insights can be used to complement existing QoL instruments and whether the process of extracting QoL-related information can be automated.
Pursuing replicability - independent evidence for previous claims - is important for creating generalizable knowledge1,2. Here we attempted replications of 274 claims of positive results from 164 quantitative papers published from 2009 to 2018 in 54 journals in the social and behavioural sciences. Replications were high powered on average to detect the original effect size (median of 99.6%), used original materials when relevant and available, and were peer reviewed in advance through a standardized internal protocol. Replications showed statistically significant results in the original pattern for 151 of 274 claims (55.1% (95% confidence interval (CI) 49.2-60.9%)) and for 80.8 of 164 papers (49.3% (95% CI 43.8-54.7%)), weighed for replicating multiple claims per paper. We observed modest variation in replication rates across disciplines (42.5-63.1%), although some estimates had high uncertainty. The median Pearson's r effect size was 0.25 (95% CI 0.21-0.27) for original studies and 0.10 (95% CI 0.09-0.13) for replication studies, an 82.4% (95% CI 67.8-88.2%) reduction in shared variance. Thirteen methods for evaluating replication success provided estimates ranging from 28.6% to 74.8% (median of 49.3%). Some decline in effect size and significance is expected based on power to detect original effects and regression to the mean because we replicated only positive results. We observe that challenges for replicability extend across social-behavioural sciences, illustrating the importance of identifying conditions that promote or inhibit replicability3,4.
Vascular liver diseases (VLDs) predominantly affect young adults and require lifelong monitoring. The health-related quality of life (HRQoL) of patients with VLDs is deteriorated, with high levels of fatigue and depressive symptoms, but their lived experience and unmet needs remain unknown. To fully integrate the patients' perspective and generate actionable insights, we conducted a qualitative peer-research study. Twelve peer researchers conducted interviews with patients in France, Spain, Switzerland, and the Netherlands. Analysis proceeded in three phases: individual inductive thematic analysis independently made by peer and academic researchers, followed by an international workshop to build a shared thematic framework. Third, directed content analysis, informed by the shared framework, was made by an academic researcher. From 27 interviews, five themes were identified, mapping the disease's impact on quality of life from diagnosis onward, and throughout the patient journey. First, the diagnosis trajectory was characterised by 'uncertainty and biographical disruption'. Then, long-term symptoms were described as impacting daily life through the experience of 'chronic uncertainty, loss of ability and social exclusion'. Participants' accounts also reflected the social impact of VLDs, which resulted in 'renegotiating roles, ties and identities'. All along the care journey, their healthcare experience could be marked by 'relational and institutional gaps shaping illness experience'. Finally, 'the sense of belonging to a community of peers' was highlighted as a potential but lacking resource. Living with a rare VLD involves uncertainty, unpredictable fatigue, stigma, and social disruption, alongside efforts to maintain dignity and autonomy. While patients can demonstrate resilience, this does not negate ongoing needs. Improving quality of life requires addressing not only symptoms such as fatigue, anxiety or sexual dysfunction but requires guidance on physical activity, nutrition or occupational and financial challenges. Ten patients and two caregivers were involved as peer researchers throughout the study, ensuring that priorities, interpretations, and conclusions reflected patient-defined concerns. All peer researchers contributed to the design, data collection and analysis activities. Due to professional and health constraints, about half of the PRs could only participate in the first local analysis phase. PRs were financially compensated.
To identify and synthesize evidence from European qualitative studies on cancer-related quality of life outcomes, needs, experiences, preferences, and concerns of people undergoing cancer treatment in the last decade. Systematic review ( https://www.crd.york.ac.uk/PROSPERO , CRD42024575065) of European studies using qualitative methodology, assessing constructs related to HRQoL, and involving adults receiving cancer treatment. The search was performed in PubMed and Scopus from January 2013 to July 2024. Titles, abstracts, and full texts screening, data extraction and risk of bias assessment were conducted independently by two researchers. The main outcomes were the themes reported in each study. The thematic analysis was performed by organizing the themes of the studies into categories. Out of 18,256 articles initially identified, 36 met the inclusion criteria: 21 with generic and 15 with specific objectives. Five categories encompassing 110 themes were identified from the generic studies: Psychological Function (n = 41), Clinical Management (n = 26), Symptoms and Physical Function (n = 18), Social Function (n = 16), and Life Disruption (n = 9). Eleven studies with specific objectives focused on clinical management with all their themes fitting within the categories identified in the generic studies. Results showed the predominance of psychological function and clinical management themes. Symptoms and physical function, social function, and life disruption maintained their importance within the classical HRQoL framework. The emergence of clinical management is consistent with the growing patient-centered care approach, suggesting the need to integrate this content into the evaluation of patients undergoing cancer treatment. most European countries were not represented, and publication bias could hide traditional domains.
Cognitive impairment associated with schizophrenia (CIAS) is a prevalent, meaningful feature of schizophrenia with limited real-world data on its recognition and care setting impact. The LUCIA initiative is an international multi-stakeholder study that explored awareness, assessment practices, and the burden of CIAS to inform future care pathways. A three phase, Delphi-informed design was applied, comprising expert interviews to frame the enquiry, qualitative interviews with health and social care professionals (HCPs; n = 74) and caregiver advocates (n = 11), two waves of a Delphi survey among HCPs (n=449 and 343, respectively) and one round among 61 patients and 112 caregivers across 15 countries (n = 964). The results showed poor awareness of CIAS across stakeholders. Structured cognitive assessment was infrequent, and clinicians largely relied on the dementia oriented Mini-Mental State Examination (MMSE) rather than schizophrenia specific tools, citing time, training, and unclear actionability as key barriers. CIAS imposed broad humanistic, clinical, societal, and economic burden - poorer quality of life, social isolation, higher comorbidities, increased hospital days and health care costs, and heavy informal care. Consensus actions prioritized the development of brief, validated screening instruments, improved psychoeducation, and accelerated research into effective pharmacological and non pharmacological interventions. These results provide additional evidence for the under-recognition of CIAS worldwide, despite its substantial multidimensional societal burden. The use of dementia-oriented cognitive tests carries significant risks of misclassification and inappropriate management. Therefore, improving awareness, implementing assessment guidelines, and accelerating therapeutic innovation is critical to improve the quality of life of CIAS patients and the wider community.
Epidermolysis bullosa (EB) is a rare genetic disorder that causes extreme skin fragility, chronic pain, and functional impairment, with major psychosocial and economic consequences. Health-related quality of life (HRQoL) data is critical to capture the full burden of EB. Health utilities derived from preference-based generic instruments such as the EQ-5D-5L provide standardized health status utility values that enable cross-disease comparisons and provide input data for cost-utility analyses to inform resource allocation. There is a notable lack of multinational, up-to-date utility data for EB. This cross-sectional study aimed to assess HRQoL in adults with EB across seven European countries (Austria, Bulgaria, Germany, Hungary, Italy, France, and Spain) using the EQ-5D-5L. A total of 328 adults with EB participated in the survey, 61% were female, 37% were between 18 and 30 years old and 46% had dystrophic EB. Based on self-reported symptoms, 58% were classified as severe EB. Pain/discomfort was the most affected EQ-5D-5L dimension (92% reporting problems; 27% severe or extreme). The mean EQ-5D value (health utility) was 0.63 (SD 0.32), ranging from 0.57 in Spain to 0.71 in Bulgaria. Patients with severe EB reported significantly lower utilities than non-severe cases (0.52 vs. 0.78, p < 0.001). Mean EQ VAS score was 60 (SD 23.2). Compared to general population norms, EB patients in all countries had markedly lower HRQoL (p < 0.005), with large effect sizes for the EQ-5D value (Cohen's d ≥ 0.8). Symptomatic burden and functional deterioration were the primary drivers of HRQoL impairments. This multinational study provides the most extensive and current health utility data for adults with EB in Europe. Findings reveal the profound HRQoL impairment in EB, particularly in severe cases. These standardized utility values fill a major evidence gap, supporting their use in health economic evaluations, cross-disease comparisons, and policy development.
BACKGROUND This cross-sectional observational study evaluated whether the severity of menopausal symptoms, insomnia, and depression is associated with decreased quality of life in peri- and postmenopausal Polish women. MATERIAL AND METHODS A total of 287 peri- and postmenopausal white European women aged 45 to 60 years were included. Exclusion criteria were hormone replacement therapy, chronic diseases or cancer, drug or alcohol addiction, psychiatric disorders, and cognitive impairment. Menopausal symptoms, insomnia, depression, and quality of life were assessed using the Greene Climacteric Scale, Athens Insomnia Scale, Beck Depression Inventory, and WHO Quality of Life-BREF questionnaire, respectively. RESULTS Postmenopausal women reported more severe psychological (10.5 vs 8.7, P=0.027) and vasomotor menopausal symptoms (2.2 vs 1.2, P<0.001) and had lower overall quality of life (3.4 vs 3.6, P=0.019), physical health (3.7 vs 3.9, P=0.014), and social relationships scores (3.5 vs 3.7, P=0.007) compared with perimenopausal women. Perimenopausal women living in rural areas experienced more severe psychological menopausal symptoms than those in urban areas (11.4 vs 8.2, P=0.036). Among postmenopausal women, lower educational level was associated with more severe vasomotor symptoms, compared with a university degree (2.6 vs 1.9, P=0.036). Severity of insomnia and depression did not correlate with education, residence, or marital status (P>0.05). Lower educational level and single marital status were associated with poorer quality of life. CONCLUSIONS Decreased quality of life was associated with greater severity of menopausal symptoms, insomnia, and depression. Identification of factors reducing quality of life in peri- and postmenopausal women may support early intervention and improve long-term functioning.
On August 21, 2013, sarin gas was used as a weapon of war in multiple areas of Ghouta, rural Damascus, Syria, in the largest confirmed chemical weapons attack against civilians in the 21st century. Despite the scale of the attack, little is known about the long-term medical symptoms experienced by survivors. This study documents the lived experiences and the short- and long-term physical and psychological consequences of sarin exposure among civilian survivors more than a decade after the attack. We conducted a retrospective qualitative descriptive study using thematic analysis based on semi-structured narrative interviews with survivors of the 2013 Ghouta chemical attacks. Participants were selected based on confirmed exposure and willingness to provide detailed accounts of their health status, experiences, and healthcare-seeking behavior. Thematic analysis was used to identify recurrent patterns and outcomes across different domains. Participants reported several medical symptoms ranging in severity, including chronic respiratory issues, neurological complaints, fatigue, and sensory disturbances. The psychological impact was universal, with widespread reports of anxiety, nightmares, panic attacks, and social withdrawal. Most participants experienced significant disruption to their quality of life and described barriers to accessing healthcare. The long-term consequences of sarin exposure in Ghouta extend far beyond the initial event, affecting nearly every aspect of survivors' lives. These findings suggest a substantial long-term burden of self-reported physical and psychological symptoms among survivors. They highlight the need for sustained medical, psychological, and social support, and underscore the importance of integrating survivor perspectives into post-conflict recovery and health system responses.
Inflammatory rheumatic diseases (IRDs) present substantial risks of infection-related comorbidities during pregnancy. This study evaluates the knowledge, experience, and perceptions of healthcare professionals concerning the prevention of these risks. An international, cross-sectional survey was administered using the SurveyMonkey platform. The survey was disseminated to healthcare professionals specializing in rheumatology, obstetrics, infectious diseases, internal medicine, general practice, and related disciplines through social media channels. Developed in accordance with European Alliance of Associations for Rheumatology (EULAR) recommendations, this survey comprised 30 questions, including multiple-choice, Likert-type, and open-ended formats. A total of 201 healthcare professionals from thirty-six countries participated in the study, with rheumatologists comprising the majority (n = 145, 72.1%). Systemic lupus erythematosus (n = 183), systemic vasculitis (n = 141), and rheumatoid arthritis (n = 86) were identified as the diseases associated with the highest risk of infection-related comorbidities. The most frequently recommended infectious conditions for screening included Hepatitis B (n = 142), urinary tract infections (n = 141), and Hepatitis C (n = 129). The primary risk factors were uncontrolled disease activity (n = 176), high-dose corticosteroid use (n = 164), and high disease severity (n = 162). The most significant systemic barriers were insufficient number of specialists (n = 156), and absence of multidisciplinary teams (n = 155). This study identifies structural and educational deficiencies in the management of infection-related comorbidities among pregnant patients with IRD. The results underscore the need for targeted clinical guidelines, enhanced multidisciplinary care models, and expanded pre-pregnancy counseling.
As peptide receptor radionuclide therapy (PRRT) maintains a key role in the treatment of neuroendocrine tumours (NETs), there is growing recognition of the importance of evaluating patient-reported health related quality of life (HRQoL). To assess this impact meaningfully, validated instruments such as the European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaires are invaluable. This study aims to evaluate the impact of PRRT on the HRQoL of patients with NETs, using generic cancer and GI-NET-specific EORTC questionnaires to provide a comprehensive understanding of how PRRT influences patient wellbeing beyond traditional clinical endpoints. Between 2015 and 2025, patients who underwent PRRT at Royal Free London Hospital, and consented to this study, completed GI.NET21 and C30 questionnaires before PRRT is administered at each cycle. Patients who completed the pre-therapy questionnaire and at least one post-PRRT questionnaire were included in this study. The response format of both questionnaires is a 4-point Likert scale. Responses to the questionnaire were linearly transformed to a 0-100 scale using EORTC guidelines. A mean score difference >5 between any treatment cycles was considered clinically relevant, and p <.05 was considered statistically significant. GI.NET HRQoL questionnaire was completed by 267 patients, and C30 questionnaires by 147 patients. There was a statistically significant improvement between the pre-therapy score and all post PRRT treatment cycle scores in symptom scales, disease-related worries, and social function with GI.NET 21. This improvement was visible even after one PRRT cycle. A non-statistically significant improvement in overall score was seen in the pre therapy score and the third post therapy score in the C30 questionnaire. PRRT improves the quality of life and disease-specific concerns of NETs using a NET-specific HRQoL assessment tool.
This study investigates differing aspects of wishes to hasten death (WTHD) distinguished by the extent to which WTHD were linked to patients' agency: desire for hastened death (DHD), defined as general wishes for death to come sooner, and hastening death intentions (HDI), defined as thoughts about ending one's life. In particular, this study aims to examine the differences between DHD and HDI in patients with amyotrophic lateral sclerosis (pALS) and identify predictive factors for both. A cross-sectional nested study was conducted within a multi-center longitudinal study involving pALS from 5 European countries. Data collected included DHD (Schedule of Attitudes toward Hastened Death), HDI ("could you currently imagine ending your life?"), sociodemographic and clinical characteristics, psychological distress, quality of life, and social and spiritual-existential aspects. In our sample of 121 pALS, 12.4% (15/121) expressed DHD, and 28.1% (34/121) expressed HDI. Of the 38 patients reporting any WTHD, only 11 experienced both DHD and HDI simultaneously. 23 patients reported HDI without DHD, while 4 patients expressed DHD without HDI. Multivariable logistic regression identified loneliness (OR = 1.33, 95% CI 1.03-1.71, p = 0.028) and reduced meaning in life (OR = 0.89, 95% CI 0.84-0.95, p < 0.001) as independent predictors of DHD. For HDI, independent predictors were female gender (OR = 3.31, 95% CI 1.37-7.98, p = 0.008) and lower spirituality (OR = 0.92, 95% CI 0.88-0.95, p < 0.001). One in 3 pALS expressed WTHD. Our separate analysis of DHD and HDI supports the existence of distinct manifestations of WTHD and varying underlying factors. While DHD and HDI were associated with different predictors, our results point to the crucial role of spiritual-existential factors in the experience of WTHD, identifying these aspects as target points for intervention. This study highlights the importance of a nuanced understanding and communication regarding WTHD.
Sickle cell disease has a profound impact on the physical, mental and social health of affected children. Currently, there is considerable variability among the available patient reported outcomes measures (PROMs) used in children with sickle cell disease, and no consensus has yet been achieved. We aim to assess the psychometric properties of the generic pediatric and proxy Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in children with sickle cell disease living in the Netherlands. Dutch children with sickle cell disease aged 5-17 years old and their caregivers were eligible. The following self-report and proxy-report PROMIS® item banks were evaluated: Anger, Anxiety, Depressive Symptoms, Fatigue, Mobility, Pain Interference, Peer Relationships, Cognitive Functioning, and Global Health. We assessed unidimensionality through confirmatory factory analysis, convergent validity with subscales from the Pediatric Quality of Life Inventory, discriminant validity, reliability, and inter-rater reliability. The study enrolled 102 patients and 102 caregivers, of which 71 were dyads. All item banks displayed sufficient unidimensionality and convergent validity. Discriminant validity was hypothesized and found for "Global Health," "Mobility" (d > 0.3), "Fatigue," and "Pain Interference" (d > 0.3), although some comparisons were non-significant. Reliability was acceptable (a > 0.80, SEM < 0.44) for all PROMIS® measures. Inter-rater reliability was moderately-strong for all item bankss (ICC 0.60-0.78) except for "Peer Relationships" (ICC = 0.47, r = 0.31) and "Global Health" (ICC = 0.26, r = 0.16), which scored lower on correlation.  PROMIS® measures displayed sufficient psychometric properties for use in pediatric sickle cell disease care and research. Proxy-reports seem viable as alternative to self-report forms of PROMIS®. • Sickle cell disease has a profound impact on the physical, mental and social health of affected children and identifying early signs of decline is crucial to intervene before complications arise. • No consensus has yet been achieved among the available patient reported outcomes measures (PROMs) used in children with sickle cell disease living in Europe. • This study provides evidence that PROMIS® measures displayed sufficient psychometric properties for use in European pediatric sickle cell disease care and research. • Proxy-reports seem viable as alternative to self-report forms of PROMIS®.