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Analyzing recurrent events in multiple sclerosis: a review of statistical models with application to the MSOAC database
International audiencePatients with multiple sclerosis (MS) are susceptible to experience recurrent events of disability progression and relapses. Many studies still focus on analyzing MS events with traditional methods such as Cox proportional hazards, Poisson, and logistic regression that either ignore subsequent events or fail to account for overdispersion and dependency between events. The aim of this study was to conduct a literature review to identify the main recurrent event models, with subsequent application of these models to the Multiple Sclerosis Outcome Assessments Consortium (MSOAC) placebo database. A total of nine main recurrent event models were identified, compared and applied to the MSOAC database to evaluate the effect of the disease course on the number of changes in the Expanded Disability Status Scale (EDSS) and relapse rate. Recurrent events methods have provided more precise estimates than traditional methods. Despite the similarities in common and event-specific estimates for clinical MS outcomes, the interpretations of the parameter estimates resulting from the models are different. Medical researchers should prioritize recurrent event methods in their statistical plans to avoid information loss and improve the precision of estimated effects
#1458 Prevalence of smoking and smoking effect on the CKD-related mortality of French dialysis patients
International audienceBackground and AimsSmoking has been described in the literature as a factor associated with kidney failure, an increased risk of cancer in patients with chronic kidney disease (CKD) and lower access to transplantation. However, few studies have investigated its role in the mortality associated with CKD in France. This study aims to investigate the factors associated with smoking prevalence and its role on the CKD-related mortality among French dialysis patients.MethodThanks to the French Epidemiologic and Information Network in Nephrology (REIN) 29,281 patients aged between 18 and 85 years old who started dialysis between 2017 and 2019 were included in the study and followed until the end of 2022. Patient's characteristics and neighbourhood social deprivation level (the European deprivation index (EDI)) were extracted. A joint modelling imputation was performed due the presence of missing data in smoking and EDI. A multinomial logistic regression with a random effect of department was used to assess the factors associated with smoking prevalence. Survival analysis was conducted, using the excess hazard modelling framework with a random effect to account for the presence of territorial inequalities between French departments in terms of mortality.ResultsAmong the 29,281 included patients, 11,425 (39.02 %) died during the follow-up time. Regarding the smoking status, 5,375 patients had missing data (18.3 %). Of the remaining 23,906 complete data, 3,619 (15.1 %) patients were current smokers, 7,966 (33.3 %) were former smokers and 12,321 (51.5 %) were non-smokers. The odds of being a former smoker and current smoker compared to non-smoker were lower for female, respectively, (OR: 0.34 [0.32, 0.37]) and (OR: 0.2 [0.18, 0.21]). The odds of being current smoker was not associated with social deprivation and decreased with age. The CKD-related mortality increased for former smokers (EHR 1.24 [1.15, 1.32]) and for current smokers (EHR 1.51 [1.38, 1.64]). The standard error of random effects was significant, indicating heterogeneity in CKD-related mortality between departments.ConclusionTo the best of our knowledge, this study is the first to quantify the smoking effect on the CKD-related mortality of dialyzed patients. Further analysis will be conducted to distinguish heterogeneity in excess mortality from expected mortality aiming to better understand territorial inequalities in the mortality of dialyzed patients
1. Personnalisation des parcours de santé : une affaire de management
International audienceL’augmentation du nombre de maladies chroniques met les organisations de santé au défi de la personnalisation, consistant à adapter les services aux besoins spécifiques de chaque patient. Aujourd’hui, ce processus est peu formalisé. Les recherches sur le sujet adoptent surtout une perspective clinique. Elles visent principalement à trouver le bon traitement pour le bon patient. C’est important mais les besoins de personnalisation comprennent aussi d’autres aspects de la prise en charge, telle que la prise en compte de contraintes de la vie quotidienne (activités sportives, gardes d’enfants, implication dans la vie professionnelle, charges ménagères…). Les considérer exige d’engager des transformations profondes de l’organisation. Celles-ci pourraient s’inspirer des exemples d’autres services marchands. Cette démarche nous a conduits à identifier six facteurs-clés qui conditionnent la gestion de la personnalisation en santé : la catégorisation, le développement des compétences, l’implication des patients, les nouvelles technologies, l’évaluation par les patients et la faisabilité financière
Abortion access in a post-dobbs southeast usa: travel patterns and racial disparities
International audienceObjectivesWe assessed the impact of state-level abortion bans on abortion access in the Southeast US following Dobbs v Jackson Women’s Health Organization. Until North Carolina’s 12-week ban was implemented on July 1, 2023, it was one of the only southern states that provided second-trimester abortion care; border states had more restrictive laws. We used statewide North Carolina Division of Public Health data to examine changes in abortion utilization by race during 2017-2023.MethodsWe used interrupted time series coupled with machine learning and geographic analyses on abortion case data, focusing on out-of-state residents traveling to North Carolina. We compared observed abortion numbers to estimated counterfactual trends and explored variations based on gestational duration and race/ethnicity.ResultsOf 53,041 total abortions in North Carolina among out-of-state residents, 46.9% occurred post-Dobbs. Based on pre-Dobbs rates, there were an estimated 11,676 more abortions than expected in the first year post-Dobbs and 3,834 more than expected after the 12-week ban. We observed 9,749 (95% empirical CI: 9,643-9,845) additional first-trimester abortions and 1,792 (95% eCI: 1,748-1,837) additional second-trimester abortions during the first year after Dobbs. Post-12-week ban, first-trimester abortions remained significantly elevated, but second-trimester cases were rare. Compared with non-Hispanic White out-of-state individuals, non-Hispanic Black out-of-state individuals had significantly higher additional abortion rates, while Hispanic individuals had significantly lower rates.ConclusionsState-level abortion bans shifted abortion travel patterns. North Carolina has become a crucial access point for abortion care in the Southeast. These findings highlight an unmet need for access to abortion care that disproportionately affects Black and Hispanic individuals, emphasizing how abortion bans exacerbate racial disparities in care
Modelling cure indicators using the curesurv R package: a tutorial using data from the French cancer registries
International audienceCure models are essential in survival analyses because they take into account the fraction of patients who achieve long-term survival and will not experience disease-related death. In a relative survival framework, these models estimate the excess hazard (i.e. the additional death risk attributable to the disease), while assuming that some patients will not experience such excess risk. In 2002, Phillips and colleagues introduced a class of cure models where background mortality is modelled as a scaled version of the general population’s mortality. This tutorial presents the curesurv R package for parametric cure modelling in the relative survival setting, with and without background mortality rescaling. The package supports both the Weibull mixture cure model and the non-mixture cure model proposed by Boussari and colleagues in 2018, offering flexible tools for assessing long-term survival. The curesurv R package application is illustrated using testicular, breast, and prostate cancer datasets from the French FRANCIM cancer registries. This tutorial provides a practical guide to researchers in epidemiology and health economics for implementing cure fraction models and interpreting long-term survival estimates
Results reporting for clinical trials led by medical universities and university hospitals in the Nordic countries was often missing or delayed
International audienceObjective: To systematically evaluate timely reporting of clinical trial results at medical universities and university hospitals in the Nordic countries.Study design and setting: In this cross-sectional study, we included trials (regardless of intervention) registered in the EU Clinical Trials Registry and/or ClinicalTrials.gov, completed 2016-2019, and led by a university with medical faculty or university hospital in Denmark, Finland, Iceland, Norway, or Sweden. We identified summary results posted at the trial registries, and conducted systematic manual searches for results publications (e.g., journal articles, preprints). We present proportions with 95% confidence intervals (CI), and medians with interquartile range (IQR).Protocol: https://osf.io/wua3r RESULTS: Among 2,112 included clinical trials, 1,650 (78.1%, 95%CI 76.3-79.8%) reported any results during our follow-up; 1,097 (51.9%, 95%CI 49.8-54.1%) reported any results within 2 years of the global completion date; and 48 (2.3%, 95%CI 1.7-3.0%) posted summary results in the registry within 1 year. Median time from global completion date to results reporting was 690 days (IQR 1,103). 856/1,681 (50.9%) of ClinicalTrials.gov-registrations were prospective. Denmark contributed approximately half of all trials. Reporting performance varied widely between institutions.Conclusion: Missing and delayed results reporting of academically led clinical trials is a pervasive problem in the Nordic countries. We relied on trial registry information, which can be incomplete. Institutions, funders, and policy makers need to support trial teams, ensure regulation adherence, and secure trial reporting before results are permanently lost
Determinants and consequences of climate commitment among facilitators of environmental awareness workshops: A Mixed-Methods Exploratory Study
ProtocoleClimate activism is an expanding form of civic engagement in response to the ecological crisis. Among these initiatives, the facilitation of participatory environmental workshops (e.g., climate, biodiversity, oceans, food systems, digital sustainability) has emerged as a structured and accessible way to disseminate knowledge, foster collective awareness, and promote pro-environmental behavior. In France alone, more than 150 different workshop formats exist, involving thousands of volunteer and professional facilitators. However, little is known about the psychosocial determinants of such engagement, nor about its behavioral and psychological consequences for facilitators themselves. This study aims to explore 1) the determinants of sustained engagement as a facilitator of environmental awareness workshops, and 2) the associated outcomes in terms of pro-environmental behaviors and climate-related emotions.Methods. This cross-sectional mixed-methods study will include (a) an online survey distributed to facilitators of environmental awareness workshops across France, with the objective of reaching at least 500 respondents, and (b) semi-structured interviews with a subsample of approximately 30 participants. The quantitative component will assess multiple dimensions of facilitation engagement, pro-environmental behaviors (mitigation, adaptation, and collective action), climate-related emotions (including eco-anxiety, hope, and helplessness), as well as psychosocial variables such as ecological identity, selfand collective efficacy, sense of community, and political orientation. The qualitative component will provide in-depth insights into facilitatorsʼ motivations, perceived barriers, and subjective experiences of the personal and collective impact of their involvement.Expected Results. The study will generate a multidimensional profile of facilitator engagement and identify key psychosocial predictors of sustained involvement. It will also document potential behavioral and psychological outcomes of facilitation, thereby informing strategies to better support, recognize, and sustain volunteer-driven environmental engagement.</p
Selective attention: How healthcare systems engage with autism in vaccination processes
People with disabilities often face structural, organizational, and social barriers that limit their access to public health measures, particularly vaccination programs. Among autistic individuals, a key barrier is the limited knowledge and training of healthcare professionals in engaging effectively with this population, which can result in suboptimal vaccination coverage and increased vulnerability to preventable diseases. This preliminary study aimed to investigate whether healthcare systems provide protocols or training to support professionals in working with autistic individuals, particularly regarding vaccination. It also examines how public and institutional discourses shape the visibility of disability within healthcare policies. Scientific and political debates around vaccination raise critical questions about whose needs are recognized and how disability is considered, making it essential to explore the ways in which autistic individuals are included—or excluded—from public health strategies. We compared two European contexts, France and Spain, which offered contrasting models of healthcare organizations. Drawing on an institutional and media review, we wanted to study how vaccination programs are implemented and communicated, and to identify whether these initiatives consider the specific needs of autistic individuals. A second phase of this study included exploratory interviews with healthcare professionals, autistic individuals, and their families to capture lived experiences and professional practices. By combining institutional, media, and personal perspectives, the study highlights the interaction between public discourse, policy design, and the everyday realities of autistic people in accessing vaccination.Results reveal a common challenge in both countries: the persistent invisibility of autistic individuals in the planning, delivery, and evaluation of vaccination programs. This invisibility is reflected in the absence of standardized protocols, limited cognitive and sensory accessibility, and reliance on local initiatives or individual professionals’ discretion. Despite differences in healthcare organization—Spain’s decentralized approach versus France’s centralized, technically oriented model—both systems deprioritize the accessibility needs of autistic individuals, resulting in unequal access to vaccination and heightened risk of preventable diseases. The study underscores the importance of integrating disability-sensitive practices into vaccination policies and healthcare training. Enhancing professional knowledge, establishing concrete protocols, and adapting communication strategies can improve both the accessibility and effectiveness of vaccination programs. Furthermore, media representations play a crucial role in shaping public perceptions of disability and health, suggesting that inclusive communication is an essential component of public health promotion. Overall, the findings highlight the need for more equitable health policies that account for the social and organizational determinants of access to care. Addressing the invisibility of autistic individuals within vaccination programs is not only a matter of medical efficiency but also a matter of social justice. Ensuring that public health initiatives are inclusive strengthens disease prevention efforts and contributes to reducing health disparities among marginalized populations
Gut Microbiota Composition and Sleep in Preschoolers: The ELFE Birth Cohort Study
International audienceSleep is essential for children’s well-being, yet insufficient sleep duration and quality are common among preschoolers. The brain–gut microbiota axis, a bidirectional communication network connecting the brain, the gastrointestinal tract, and the microorganisms living there, known as the gut microbiota, influences sleep regulation, but its role in children remains largely unexplored. Here, we examined the association between gut microbiota and sleep in preschoolers from Étude Longitudinale Française depuis l’Enfance (ELFE) birth cohort study. Methods: This study included 597 children (51.2% boys) with available stool samples and sleep data at 3.5 years. The gut microbiota data was analyzed using bacterial 16S rRNA sequencing. Data on day and night sleep durations and frequencies of sleep onset difficulties and night waking were collected through telephone questionnaires and grouped into ‘optimal’ and ‘suboptimal’ clusters using Latent Class Analysis. Statistical analyses involved multivariate logistic regressions or multivariate permutation analysis of variance, controlling for confounders. Results: In total, 25% of the included children were in the suboptimal sleep cluster. No significant associations were found between gut microbiota diversity and composition and sleep clusters at age 3.5 years. Similarly, no differences were found in the abundance of specific microbiota genera between the two sleep clusters. Conclusions: While emerging evidence suggests correlations between gut microbiota and sleep in preschool children, our results do not confirm such correlations. The data used in this study were obtained from a homogeneous, high socioeconomic population, which must be considered when interpreting the findings. Further research is needed to validate the results of this study
Tiers-lieux : quelles contributions à la santé sur les territoires ?
International audienceCet article vise à éclairer le rôle des tiers-lieux en santé dans la redéfinition des relations entre les acteurs de la santé sur les territoires. Une revue de littérature met en évidence l'importance du lien social, du pouvoir d'agir et de l'ancrage territorial pour répondre aux besoins de santé des populations L'analyse des témoignages de douze co-fondateurs et gestionnaires de tiers-lieux spécialisés dans le champ de la santé permet ensuite de montrer comment ils s'emparent de ces concepts pour fédérer des communautés sur les territoires et améliorer l'accès à une santé globale