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Introduction: Rare diseases (RDs) are a severe, chronic, degenerative and often life-threatening group of conditions affecting more than 30 million people in Europe. Their impact is often underreported and ranges from psychological and physical symptoms seriously compromising quality of life. There is then a need to consolidate knowledge on the economic, social, and quality of life impacts of rare diseases. Methods: This scoping review is the result of 9 qualitative interviews with experts and a literature search on Cost-of-Illness (COI) studies and quality of life (QoL) studies following the PRISMA methodology. Grey literature was also included to complement findings. Results. 63 COI studies were retrieved, covering 42 diseases and a vast majority of them using a prevalence-based approach (94%). All studies included medical costs, while 60% included non-medical costs, 68% productivity losses and 43% informal care costs. 56 studies on QoL were retrieved, mostly from Europe, with 30 different measurement tools. Grey literature included surveys from the pharmaceutical industry and patient organisations. Discussion: The majority of studies evaluating the impact of RDs on the individual and society use the COI approach, mostly from a societal perspective. Studies often vary in scope, making them difficult to consolidate or compare results. While medical costs and productivity losses are consistently included, QoL aspects are rarely considered in COI and are usually measured through generic tools. Conclusion: A comprehensive study on impact of rare disease across countries in Europe is lacking. Existing studies are heterogeneous in their scope and methodology and often lack a holistic picture of the impact of rare. Consensus on standards and methodology across countries and diseases is then needed. Studies that consider a holistic approach are often conducted by pharmaceutical companies and patient organisations exploring a specific disease area but are not necessarily visible in the literature and could benefit from the sharing of standards and best practices. [ABSTRACT FROM AUTHOR]

The main aim of this study was to assess the criterion validity of the Sedentary Behavior Questionnaire (SBQ) to measure SB in community-dwelling older adults using thigh-measured accelerometry as the criterion method. 801 participants (75.6 ± 6.1 years old, 57.6% females) provided valid thigh-based accelerometer data (activPAL/Axivity) and completed the SBQ. Criterion validity was assessed using Spearman's Rho coefficients. Bland–Altman plots, including 95% limits of agreement and Intraclass Correlation Coefficient (ICC), were used to assess the agreement between self-report and device-measured daily SB time. Strength of the association was examined using multiple linear regression. There was a weak correlation (Rho = 0.25, p <.001) between self-reported and device-based SB measures. The SBQ under-estimated daily SB time compared to accelerometry. Our results highlighted an overall weak-to-moderate correlation between measures, with significant differences between each country's version. Researchers should be cautious when using the SBQ to provide an estimation of SB time in older adults. [ABSTRACT FROM AUTHOR]

Marine heatwaves have been linked to negative ecological effects in recent decades 1,2 . If marine heatwaves regularly induce community reorganization and biomass collapses in fishes, the consequences could be catastrophic for ecosystems, fisheries and human communities 3,4 . However, the extent to which marine heatwaves have negative impacts on fish biomass or community composition, or even whether their effects can be distinguished from natural and sampling variability, remains unclear. We investigated the effects of 248 sea-bottom heatwaves from 1993 to 2019 on marine fishes by analysing 82,322 hauls (samples) from long-term scientific surveys of continental shelf ecosystems in North America and Europe spanning the subtropics to the Arctic. Here we show that the effects of marine heatwaves on fish biomass were often minimal and could not be distinguished from natural and sampling variability. Furthermore, marine heatwaves were not consistently associated with tropicalization (gain of warm-affiliated species) or deborealization (loss of cold-affiliated species) in these ecosystems. Although steep declines in biomass occasionally occurred after marine heatwaves, these were the exception, not the rule. Against the highly variable backdrop of ocean ecosystems, marine heatwaves have not driven biomass change or community turnover in fish communities that support many of the world's largest and most productive fisheries., (© 2023. The Author(s), under exclusive licence to Springer Nature Limited.)

Thin and muscular have been characterized as ideals for women and men, respectively. Little research has investigated whether men and women have accurate perceptions of opposite‐sex preferences of thinness and muscularity. Further, no study has explored whether opposite‐sex perceptions of thinness and muscularity preferences differ for short‐term and long‐term relationships. The present study set out to address these questions. We used interactive 3D human models to represent bodies varying in size (body mass index/BMI weight scaled by height) and body composition. University‐aged (18–31) White European heterosexual men and women were asked to choose their own and ideal body shape, the ideal body shape for a short‐ and a long‐term partner, and the body shape they thought the opposite‐sex would most like for short‐ and long‐term partners. Women overestimated the thinness that men prefer in a partner and men overestimated the heaviness and muscularity that women prefer in a partner. These misperceptions were more exaggerated for short‐term relationships than for long‐term relationships. The results illustrate the importance of investigating misperceptions of opposite‐sex preferences and raise the possibility that correcting misperceptions might have utility in reducing body dissatisfaction or eating disorders. [ABSTRACT FROM AUTHOR]