Objectives:Inflammatory rheumatic and musculoskeletal diseases (RMDs) are hallmarked by an increased risk of cardiovascular (CV) disease compared with the general population. Evidence suggests that CV risk remains under-recognised and underdiscussed in routine care, although data on patient experience is lacking. We aimed to assess awareness, perceptions, and experiences regarding CV risk and prevention in patients with RMDs. Methods:An anonymous, online survey was codesigned by rheumatologists, researchers, and patient research partners in English language and translated into 9 languages. This was distributed through patient organisations/forums and social media. Results:A total of 951 patients with RMDs from 43 countries (mainly females, aged 50-70 years, and with a diagnosis of rheumatoid arthritis, spondyloarthritis, or systemic lupus erythematosus) completed the survey. Although 68% of respondents acknowledged an increased CV risk in RMDs, and traditional CV risk factors were recognised by up to 60% of the participants, knowledge of disease-specific contributors (eg, disease activity) to CV risk was limited. Only 35% of respondents had ever discussed CV risk with a healthcare provider, mainly rheumatologists or cardiologists, and the content primarily focused on lifestyle advice. Lack of awareness on the topic relevance (38%), perceived complexity of the topic (25%), limited time of clinical visits (35%), and lack of informative materials (33%) emerged as the main key barriers among those poorly/not informed. Conclusions:This large, multinational survey demonstrates substantial gaps in CV risk awareness, knowledge, and patient-provider communication among patients with RMDs. These figures support the development of structured, patient-centred educational strategies and enhanced multidisciplinary communication schemes to improve CV prevention in RMDs.

Während entzündlich-rheumatische Erkrankungen in der Regel in erster Linie medikamentös behandelt werden, spielen bei vorwiegend degenerativen muskuloskelettalen Erkrankungen Lebensstilfaktoren und nichtmedikamentöse Therapien eine wichtige Rolle. Interessanterweise halten sich allerdings je nach Studie etwa 30–80

Objectives:Low-dose computed tomography lung cancer screening (LDCT-LCS) significantly reduces mortality, yet identifying high-risk individuals while reducing over-screening remains challenging. Risk-based eligibility models are promising to optimize participant selection. Within the European context, we assessed the types, outcomes, and impact of these risk-based eligibility models for LDCT-LCS. Methods:We systematically reviewed prediction model studies (PROSPERO CRD42025648906) across EMBASE, MEDLINE, and Cochrane Central Register of Controlled Trials. We included original research on adults aged 18+ at risk for LC, excluding East-Asian populations. Study characteristics, model type, performance and outcomes were extracted for narrative synthesis. Results:The review included 46 articles (2003-2025), identifying 39 risk-prediction models. Models were primarily statistical (72%); PLCOm2012 was most frequent. Age (100%), smoking duration (91%), and intensity (72%) were the most common variables. Risk models improved eligibility and demonstrated cost-effectiveness over traditional criteria, though heterogeneity and population-specific calibration remain challenges. Conclusion:Risk-based eligibility models improve LDCT-LCS efficiency by enhancing detection rates and personalization. While PLCOm2012 is prominent, addressing model heterogeneity, ensuring population-specific validation, and calibration are crucial to optimize LDCT-LCS outcomes in Europe. Systematic Review Registration:Identifier CRD42025648906.

Background:As value-based healthcare (VBHC) continues to reshape global health systems, there is growing recognition that patient-reported outcomes should track not only disease but also positive factors like wellness. Despite the centrality of pleasure to motivation, resilience, and quality of life, no instruments directly assess this construct. To address this gap, the present study developed and preliminarily validated the Pleasurable Affect Levels Scale (PALS), a novel, generic patient-reported outcome measure (PROM) designed to quantify the experience of pleasure relevant for clinical decision making. Methods:A scoping literature review was conducted to identify validated scales measuring pleasure or related constructs and inform the novel scale development. Four iterative rounds of pilot testing were carried out. Item generation and refinement were guided by patient feedback, expert consensus, and psychometric testing. Analyses included exploratory factor analysis (EFA) to examine construct validity, item reduction based on cross-loadings and redundancy, and reliability assessment via Cronbach's alpha. Results:The literature review identified three validated scales (DARS, SAAS, SHAPS), each focused on anhedonia rather than pleasure itself. Final refinement across pilots yielded a final 23-item scale. Factor analysis supported a four-factor structure-functional maintenance, sensory input, social interaction, and leisure-with strong sampling adequacy (KMO = 0.941), significant Bartlett's test (p < 0.05), and excellent internal consistency (α = 0.942). Conclusion:Preliminary findings indicate strong psychometric performance. The assessment of pleasure could have important implications for clinical practice, research, and health policy by enabling clinicians to quantify and track patient health beyond symptom reduction, support treatment decisions, and potentially improve adherence. By incorporating pleasure into patient care and dialogue, it may promote a more comprehensive approach to healthcare, although these applications require validation through real-world clinical implementation and testing.

OBJECTIVES:Neurological involvement in Sjögren's disease (neuro-SjD), reported by up to 20% of patients, represents a highly relevant extra-glandular manifestation. Owing to the clinical complexity, frequent diagnostic delay and the poor response to treatment, neuro-SjD remains a major unmet need. This study aimed to better understand the burden of neuro-SjD from the patient perspective, focusing on the overall care journey. METHODS:An anonymous multilingual survey was co-developed by patient research partners and rheumatologists and distributed via patient associations. RESULTS:A total of 4050 valid responses from SjD patients across 60 countries were collected and analysed. All respondents reported at least one of the symptoms listed in the survey, with each symptom having a medium-to-severe impact in at least half of the patients. A formal diagnosis of neuro-SjD most often made by a neurologist was reported by 21.6% of symptomatic patients. Among those diagnosed, only 21% received pharmacological therapies and just 23% of them reported significant or complete symptom improvement. Overall, satisfaction with neuro-SjD care was poor, with half of the respondents feeling that healthcare providers underestimated their neurological symptoms. CONCLUSION:Our findings suggest that the prevalence of neurological symptoms in SjD is likely underestimated and highlight neuro-SjD as a major unmet need. We advocate for raising awareness and prompting research in this area, facilitating the diagnosis and correct attribution of these debilitating manifestations to support timely diagnosis, accurate symptom attribution and ultimately identifying effective treatment strategies to improve the quality of life of people living with SjD.

BackgroundExtending the concept of work-life balance and recognising that many people’s lives cannot easily be divided into work and non-work life, Occupational Balance enables the exploration of a person’s satisfaction with the balance and variance of occupations in daily life at most contemporary levels.ObjectiveTo effectively measure Occupational Balance in the German-speaking population, this study developed a German version of the Occupational Balance Questionnaire (OBQ11-G) by conducting a cross-sectional study involving translation, cultural adaptation and content validity evaluation.MethodsA preliminary German version of the OBQ11 was developed based on Beaton’s guideline and then finalised after an online focus group (n = 7 occupational therapists; 5 women [71%]) to reach consensus on the relevance, comprehensibility and overall comprehensiveness of the items. We applied the framework method to analyse the focus group’s qualitative data and descriptive statistics to report the quantitative data.ResultsOverall, the experts rated all questionnaire items as “relevant” to “very relevant”, but eight of the eleven items were slightly adapted to improve comprehensibility, due to inconsistencies in terminology. Experts did not agree on whether the questionnaire fully covered the concept of Occupational Balance, with 57% of respondents agreeing and 43% disagreeing, suggesting that additional assessments should be applied when measuring Occupational Balance.ConclusionThe German version of the OBQ11 has now been thoroughly translated, and further studies on its psychometric properties are needed to enhance its validity.

BACKGROUND:Despite an increasing number of biological therapies, publications report conflicting surgery rates in Crohn's disease (CD). AIMS:To examine trends in the rates of surgeries for intestinal and perianal fistulizing CD in the era of biologics in Austria. METHODS:In this nationwide population-based study patients with a diagnosis of CD and CD-related intestinal or perianal surgeries between 2011 and 2019 were included. Data were retrospectively retrieved from the Austrian Health Insurance Funds. Absolute numbers of CD-related surgeries per year and per 100,000 Austrians were calculated and changes during the observation period compared with estimates of the CD prevalence. RESULTS:A cohort of 6,593 patients with CD underwent a total of 4,758 intestinal and 4,794 perianal surgeries from 2011 through 2019. Intestinal surgery rates remained stable with 5.9 vs. 6.0/100,000 Austrians and perianal surgeries rose from 5.0 to 7.5/100,000, equalling an annual increase of 0.2% and 5.2%, respectively, whereas the prevalence of CD rose by 3.2% annually (95% confidence interval 1.9 - 4.6). CONCLUSION:In Austrian CD patients intestinal resection rates remained stable, whereas perianal fistula surgeries increased. Adjustment for rising CD prevalence revealed fewer intestinal resections per CD patient years, while perianal fistula surgery rates continued to increase.

Objectives This study investigates prevalence, usage, and perceived scientific legitimacy of anthroposophic medicine (AM) a prominent form of complementary and alternative medicine (CAM). It further explores associations with socioeconomic and psychological factors, with particular attention to authoritarian orientation, as measured by the KSA-3 scale and low ambiguity tolerance. Design/Setting A cross-sectional online survey was conducted among the Austrian population assessing sociodemographic characteristics, healthcare utilization, attitudes toward conventional medicine, AM, and CAM, as well as selected psychological variables. Participants A total of 429 individuals completed the survey. To enhance representativeness, the sample was post-stratified according to recent election results. Outcome Measures Regression models and appropriate statistical tests, selected based on data distribution and scale level, were used to evaluate associations between sociodemographic factors, psychological characteristics, and the use of and attitudes toward AM and CAM. Results Individuals over 50 showed higher CAM preference (p = 0.044), and were more likely to have used AM at least once (p = 0.083). Similarly, women showed higher CAM preferences (p = 0.004) and a higher likelihood of AM use (p < 0.001). Participants who viewed AM as scientific tended to be older (p < 0.001), have a higher income (p < 0.001), and resided more often in rural areas (p = 0.012). Psychologically, lower ambiguity tolerance and stronger perceived health control correlated with a stronger belief in AM’s scientific legitimacy (p < 0.05). Higher authoritarian orientation was also significantly associated with an increased belief in AM as scientific and a preference for eminence-based approaches (p < 0.001). Conclusions In our sample, we demonstrate how differences in specific socioeconomic and psychological factors correspond to differences in attitudes toward CAM and AM. These findings represent a promising foundation for more interdisciplinary research aimed at uncovering the underlying drivers of AM and CAM utilization.

AIM:Perforated diverticulitis of the left colon with peritonitis remains life-threatening. However, the optimal surgical strategy is still under debate. The presented study compares the impact of a routinely applied two-stage damage control strategy (DCS) in perforated purulent or faeculent diverticulitis with currently used non-DCS strategies. METHODS:This international multicentre retrospective cohort study was conducted in nine European hospitals. In five hospitals, the therapeutic algorithm covered the routine application of a two-stage DCS as a surgical standard for treating perforated diverticulitis. Four hospitals performed conventional one-stage surgeries and served as controls. The primary outcome was stoma rate at the end of the initial hospital stay. The key secondary outcomes were morbidity and mortality rates. RESULTS:Overall, data from 558 patients were included, 365 of whom were from DCS centres with equally distributed sex. Patients treated in DCS centres were significantly younger (67 ± 14 vs. 70 ± 14, p = 0.007) but showed a higher Mannheim peritonitis index (22.3 ± 7.9 vs. 20.4 ± 8.0, p = 0.008). At discharge, patients treated in DCS hospitals had a significantly lower stoma rate (stoma-free: DCS, 45.6% vs. non-DCS, 20.8%; p = 0.001). Secondary outcome parameters showed no differences between the investigated cohorts, in addition to significantly longer ICU stays (7.28 ± 11.13 vs. 5.15 ± 9.60 days; p < 0.001) and an increased number of surgical interventions during the hospital stay in DCS centres (2.64 ± 1.89 vs. 1.51 ± 1.10; p < 0.001). CONCLUSION:Patients treated in DCS hospitals for perforated diverticulitis are significantly more likely to be discharged without a stoma than patients treated in hospitals using the current standard treatment.

IntroductionSystemic autoimmune rheumatic diseases (SARDs) are associated with a higher risk of cardiovascular diseases. During pregnancy, maternal immune disbalance might impact the vasculature of the newborn. We, therefore, aimed to investigate a possible association between maternal inflammatory rheumatic disease and inflammatory signaling in the umbilical cord of the newborn.MethodsThis single-center study included neonates of women with connective tissue disorders (CTDs) and inflammatory joint diseases (IJDs) and healthy controls (HC).ResultsThe tissue of umbilical cords (UCs) of neonates born to IJD patients showed elevated ICAM-1 expression, indicating increased inflammatory response. Monocyte subsets in venous umbilical cord blood (VUCB) showed an equal distribution of non-classical monocytes in all groups. Leukocytes in VUCB showed no significant differences between the three groups although a trend of Treg reduction and an increase in cytotoxic T lymphocytes (CTLs) in the IJD offspring group were detectable. Cytokine levels of VUCB serum were overall low, except IL-8 with significantly elevated concentrations in the IJD neonate group. In the maternal serum of IJD patients, IL-8 levels were low comparable to IL-8 in healthy umbilical cord vein (UCV) serum, indicating a de novo synthesis of IL-8 in the UCV of neonates. Platelet-derived growth factor AA (PDGF-AA) was significantly reduced in the sera of IJD and CTD offspring. Furthermore, a significant reduction of human UCV smooth muscle cell (HUVSMC) proliferation incubated with plasma of the VUCB-IJD sera of neonates, possibly an effect of reduced PDGF-AA levels, is detectable.ConclusionWell-controlled SARD during pregnancy does not seem to influence most of the inflammatory signaling in the UC. However, the elevated levels of IL-8 in the serum of neonates of women with IJD might have an impact on long-term vascular health and cardiovascular events.

Background The use of heterogeneous empirical definitions to assess disease activity in adult-onset Still's disease limits evidence on the efficacy of immunosuppressive agents. Thus, we aimed to specifically develop and validate definitions of clinical criteria for the assessment of disease activity in adult-onset Still's disease. Methods We used data from the GIRRCS (Gruppo Italiano Di Ricerca in Reumatologia Clinica e Sperimentale) adult-onset Still's disease cohort to develop and validate clinical criteria for disease activity. From Jan 1, 2022, to Dec 31, 2023, consecutive patients attending the Italian rheumatological centres involved in the GIRRCS adult-onset Still's disease were included if they were aged ≥18 years and fulfilled the Yamaguchi criteria for diagnosis of adult-onset Still's disease. Patients' clinical characteristics were assessed at baseline and 3 months and 6 months. Additionally, we used baseline data from the CONSIDER (Canakinumab for treatment of adult-onset Still's disease to achieve reduction of arthritic manifestation) trial to externally validate the criteria (recruitment June 21, 2012, to May 5, 2018). The item reduction was based on correlations between clinical characteristics and disease activity as scored by physicians, principal component analysis, and a longitudinal linear mixed model with disease activity as the dependent variable. Performance of the developed criteria was evaluated using area under the receiver operating characteristic curves (AUROCs), separately for development and validation data. People with lived experience of adult-onset Still's disease were involved in study design and implementation. Findings 187 patients from GIRRCS (130 [70%] in the development cohort and 57 [30%] in the preliminary validation cohort; 94 [50%] female and 93 [50%] male; mean age 40·8 years [SD 17·3]) and 41 patients from the CONSIDER trial (28 [68%] female and 13 [32%] male; mean age 43·0 years [13·1]) were evaluated. Fever, skin rash, arthritis, patient global assessment of at least 2 cm, and C-reactive protein (CRP) greater than 10 mg/L were selected as the criteria for disease activity assessment. Active adult-onset Still's disease was defined as fever and one of the following criteria: skin rash, arthritis, patient global assessment of at least 2 cm, CRP greater than 10 mg/L; or as no fever but at least three of the other criteria (AUROC of 0·93 in development cohort, 0·85 in the preliminary validation cohort, and 0·88 in the external validation cohort). Patients with no fever and no more than one of the aforementioned criteria were considered to have low disease activity (AUROC of 0·86 at 3 months and 0·94 at 6 months in the preliminary validation cohort). Clinically inactive disease was defined as the absence of all five criteria. Interpretation Disease activity criteria in adult-onset Still's disease were developed to support the attainment of clinically inactive disease as the main treatment target in patient management. Funding None.

Key Points Women felt vulnerable and felt that their housework obligations may interfere with CKD treatment, especially dialysis.Women felt they were good at protecting their health, whereas men might expect help from others and live in denial when confronted with advanced CKD. Background CKD affects more women than men worldwide; however, men comprise most patients who receive KRT. We aimed to describe the perspectives of patients and their caregivers regarding gender disparities in CKD. Methods Semi-structured interviews were conducted with 45 patients with CKD (20 women) and 14 caregivers (12 women) from seven clinics in Austria. The interviews were analyzed thematically. Results Five themes were identified in this study. Participants perceived that women were disadvantaged and vulnerable (silent and intimidated, single mother predicament, impeded access to care and support because of socioeconomic disadvantage, had to fend for themselves); fulfilling gender roles and norms (primarily responsible for childcare, pressure to perform well as homemakers, put others' needs before their own, encouraging husband's treatment adherence); and protecting their own health (self-disciplined, vigilant, confronted health challenges, advocated for their needs). Men were seen to place the onus of care on others (expected help from family, relied on others for decisions). Both men and women experienced a disease-related identity crisis and distress (women: impaired body image, mental distress; men: denial and self-destruction, emasculated by sickness). Conclusions Women with CKD felt vulnerable and were inclined to fulfill gender norms and responsibilities as caregivers, but were also vigilant about protecting their own health. Men tended to be reluctant to accept CKD and appeared to depend on others for disease management. Better awareness and addressing these concerns can inform strategies to minimize gender disparities in access to care and outcomes in CKD.

Abstract Background Bowel urgency is one of the most bothersome symptoms in patients with Ulcerative colitis (UC) and Crohn´s disease (CD). However, only recently attention has been focused on this symptom and data on associated factors, especially in patients with CD, is scarce. The Health Outcome Observatory (H2O) project aims to standardize and facilitate the collection of patients reported outcomes (PROs) and clinical outcomes by developing multi-stakeholder agreed Core Outcome Sets (COS) including one for patients with inflammatory bowel disease (IBD). The present study describes preliminary data on bowel urgency. Methods We analyzed prospectively collected data from the Health Outcome Observatory (H2O) project at the Medical University of Vienna, Austria. Bowel urgency was one of the collected variables and was defined by the validated Urgency Numeric Rating Scale (NRS) ≥ 3 (on a 0-10 scale). We used linear regression with bowel urgency as the outcome and age, gender, diagnosis (CD/IBDU/UC) and quality of life (PROMIS_Global_10_02; scale from 1-5) as predictors. Results Out of a total of 480 included patients who took part in the H2O project, we analyzed 388 patients who answered the question regarding bowel urgency. The mean urgency NRS in CD patients was 2.71 (SD +/- 2.92) and 2.24 in UC (SD +/- 2.68). Numerically more patients with CD (40.9%) than with UC (33.8%) complained about bowel urgency. Quality of life (coef 1.30, coef (95% CI) 1.01-1.59, p<0.01) was associated with bowel urgency. Age, gender, diagnosis (CD vs UC vs IBDU) was not associated with bowel urgency (see Table 1). Conclusion Bowel urgency is a common symptom in patients with inflammatory bowel disease and is associated with a lower quality of life. Caregivers should acknowledge the importance of this debilitating symptom. References Fierens L, Carney N, Novacek G, van der Woude CJ, Siegmund B, CasellasF, Borruel N, Huberts AS, Sonnenberg E, Gerold N, Primas C, Hedin CRH,Stamm T, Julsgaard M, Fiorino G, Radice S, Zini MLL, Gross E, Sander C,Arijs I, Vakouftsi VR, Koltai T, Health Outcomes Observatory H O PatientAdvisory Board For Inflammatory Bowel Diseases, Health OutcomesObservatory H2O Steering Committee, Charlafti I, Ferrante M. A CoreOutcome Set for Inflammatory Bowel Diseases: Development andRecommendations for Implementation in Clinical Practice Through anInternational Multi-stakeholder Consensus Process. J Crohns Colitis.2024 Oct 15;18(10):1583-1595. doi: 10.1093/ecco-jcc/jjad195. PMID:38019894.

The mere-measurement effect is the phenomenon in which subjects exposed to measurements have their perceptions and/or behaviors on the inquired topic affected simply through the act of responding. Patient-reported outcomes (PROs) are increasingly used to assess patient perspective and quality of life in clinical trials and different health care settings. This systematic literature review aims to assess what is currently known about the mere-measurement effect of PROs. A systematic literature review and meta-analysis was conducted. We included studies that provided evidence on perceptual or behavioral changes in patients as a result of exposure to questionnaire items assessing PROs. All adult participants were included regardless of demographics. Any study design was considered eligible for inclusion. The databases MEDLINE [PubMed], CINAHL [Ebsco], Web of Science and ScienceDirect were searched. The search resulted in 636 articles which led to a final extraction of nine. Overall, seven of the nine articles reported a significant main effect, i.e. presence of the mere-measurement effect. For the meta-analysis, thirteen different interventions were included. There was a one-directional, positive and significant overall risk ratio of 1.17 [CI95