Claire Pilet

Background: The introduction of disease-modifying therapies (DMTs) has transformed the prognosis of children with spinal muscular atrophy (SMA), creating new uncertainties in defining paediatric palliative care (PPC). This study explores the perspectives of paediatric neurologists and paediatric physical medicine and rehabilitation (PM&R) specialists in France on the definition of a palliative care (PC) situation, the PC practices in SMA and the integration of PPC teams in this evolving context. Methods: We conducted a qualitative study with 16 French paediatric neurologists and paediatric PM&R specialists. Semi-structured interviews were thematically analysed and supported by reflexive practices and triangulation. Results: Five main categories emerged from the analysis, revealing the heterogeneous definition of a PC situation and of the widespread involvement of PPC teams in untreated children. In the case of the treated SMA type 1 children, the PPC teams were mainly not involved, although the clinical complexity and uncertainty were acknowledged, and many of these teams’ qualifications were recognised. This was hindered by several factors, including specialists’ self-perceived expertise, difficulties in distinguishing specific skills from those of other teams, and the challenge of introducing PC to parents. Facilitators included renaming PPC teams, ensuring availability outside office hours, and perceiving PPC professionals as colleagues. Conclusions: This study highlights the widespread dimension of the PC dimension in SMA type 0 and 1 and the heterogeneous perceptions of PPC in light of the prognostic uncertainty introduced by DMTs among specialists caring for SMA. Exploring the introduction of a PPC team as a family-centered choice in treated SMA type 1 children could facilitate practitioners’ choice in referring to a PPC team.

Suite à un événement de santé urgent et malgré une prise en charge, des douleurs chroniques (DC) peuvent se développer et s’installer dans la durée. Vingt à 30% de la population dans le monde, ainsi qu’en France, en serait affectée. Notre étude vise à quantifier l’incidence de la DC suite à un passage aux urgences et à mieux comprendre les facteurs de risque, notamment les émotions peu explorées encore à ce jour. Une étude spécifique sur la douleur a été menée dans le cadre d’un essai randomisé multicentrique sur la prévention du syndrome post-commotionnel et du trouble du stress post-traumatique (SOFTER IV) après un passage aux urgences. Les émotions ont été interrogées grâce à la roue des émotions : 4 négatives, colère, peur, regret, tristesse, et 4 positives, apaisement, contentement, joie et intérêt, dont l’intensité variait de 1 à 5. Il était également possible de déclarer « aucune émotion » ou une autre émotion que celles de la roue. Neuf cent quatorze et 605 patients indemnes de DC lors de leur passage aux urgences ont répondu respectivement aux suivis 4 mois et 1 an. Ce travail a été complété par une étude de la cohorte ESPARR, Etude de Suivi d’une Population d’Accidentés de la Route dans le Rhône. Parmi les patients présumés indemnes de DC lors de leur passage aux urgences, 1071 ont complété un questionnaire 2 ans après leur accident. Notre travail a permis de montrer que 30% des patients indemnes de douleur chronique souffrent de DC 4 mois après leur passage aux urgences et 27% encore 1 an après. Plus spécifiquement, près de la moitié des victimes souffrent encore de douleurs 2 ans après un accident de la circulation routière et 1 enfant sur 6 est concerné. Parmi les facteurs biopsychosociaux déjà identifiés dans la littérature comme facteurs de risque de DC après un accident de circulation routière, nous retrouvons la gravité des lésions et l’atteinte des membres inférieurs. Nous identifions aussi de nouveaux facteurs de risque de DC après un accident : l’âge adulte par rapport aux enfants de moins de 16 ans, le fait d’avoir vécu un événement de vie négatif dans l’année écoulée, et celui de présenter des antécédents ostéoarticulaires. Les patients qui ressentent de façon intense de la tristesse (OR=1,5, p-value=0,02) ou de la colère (OR=1,6, p-value=0,03) au moment de leur admission dans un service d’urgences ont un risque majoré de DC à 4 mois L’effet de ces ressentis est partiellement expliqué par la prise en compte de leur disposition à ressentir souvent ces émotions. Pour la tristesse, quelle que soit le ressenti aux urgences, la disposition à ressentir souvent de la tristesse constituerait un facteur de risque de DC à 4 mois. Pour la colère, c’est seulement chez les patients qui ont déclaré de la colère aux urgences et qui ont aussi une disposition à ressentir souvent de la colère qu’un surrisque de DC à 4 mois serait observé. La persistance de la tristesse et/ou de la colère entre l’entrée et la sortie du service des urgences augmente les risques de DC à 4 mois et à 1 an, tandis que la persistance de la tristesse seule augmente uniquement le risque DC à 1 an. Avec près d’un tiers des patients qui développent une DC après un passage aux urgences, nos travaux confirment l’enjeu sanitaire et sociétal que constitue cette maladie. Nous avons mis en évidence un rôle spécifique de certaines émotions négatives fortes dans le risque de DC, notamment pour la tristesse et la colère. Avec ces nouveaux éclairages sur les mécanismes de développement d’une DC, nos travaux constituent une première étape de réflexion sur de nouvelles pistes de prévention axées sur les émotions. De plus, avec les spécificités que nous avons montrées dans le cas du traumatisme routier, des travaux complémentaires sur le diagnostic posé aux urgences et sa prise en charge sont également des éléments clés pour comprendre et prévenir la DC.

Background/Objectives: Very few studies describe the various feelings experienced in the emergency department (ED). Our study describes the pain, stress, and negative and positive emotions experienced by patients admitted to the ED in relation to age, gender, and reason for ED admission. Methods: Patients admitted to the ED of seven French hospitals were surveyed as part of the randomised multicentre study SOFTER IV (n = 2846). They reported the intensity of their pain on a numerical rating scale of 0 to 10, the intensity of their stress on an equivalent scale, and their emotions on a five-point rating scale using an adapted version of the Geneva Emotion Wheel proposed by Scherer, based on eight core emotions: fear, anger, regret, sadness, relief, interest, joy, and satisfaction. Results: Patients reported an average pain rating of 4.5 (SD = 3.0) and an average stress rating of 3.4 (SD = 3.1). Forty-six percent reported at least one strong negative emotion, and the two most frequently reported were fear and sadness. Forty-seven percent of patients described feeling at least one strong positive emotion, and the two most frequently reported were interest and relief. Pain was significantly higher among female patients under 60 admitted for injury. Stress was significantly higher among female patients under 60 admitted for illness. Emotions of negative valency were significantly higher among women admitted for injury. Emotions of positive valency were significantly higher among men over 60 admitted for illness. Conclusions: Experiences of pain, stress, and emotions have a strong presence in the ED. The reporting of these feelings varies depending on age, gender, and reason for ED admission.

Objective: We aimed to quantify, through simulations using real crash data, the number of potentially avoided crashes following different replacement levels of light vehicles by level-5 automated light vehicles (AVs). Methods: Since level-5 AVs are not on the road yet, or are too rare, we simulated their introduction into traffic using a national database of all fatal crashes and 5% of injury crashes observed in France in 2011. We fictitiously replaced a certain proportion of light vehicles (LVs) involved in crashes by level-5 AVs, and applied crash avoidance probabilities estimated by a number of experts regarding the capabilities of AVs depending on specific configurations. Estimates of the percentage of avoided crashes per user configuration and according to three selected (10%, 50%, 100%) replacement levels were made, as well as estimates taking into account the relative weight of these crash configurations, and considering fatal and injury crashes separately. Results: Our simulation suggests that a reduction of almost half of fatal crashes (56%) and injury crashes (46%) could be expected by replacing all LVs on the road with level-5 AVs. The introduction of AVs would be the least effective for crashes involving a vulnerable road user, especially motorcyclists. Conclusion: This result represents encouraging prospects for the introduction of automated vehicles into traffic, while making it clear that, even with all light vehicles replaced with level 5-AVs, all issues would not be solved, especially for crashes involving motorcyclists, cyclists and pedestrians.

Innovation and health-care funding reforms have contributed to the deployment of Information and Communication Technology (ICT) to improve patient care. Many health-care organizations considered the application of ICT as a crucial key to enhance health-care management. The purpose of this paper is to provide a methodology to assess the organizational impact of high-level Health Information System (HIS) on patient pathway. We propose an integrated performance evaluation of HIS approach through the combination of formal modeling using the Architecture of Integrated Information Systems (ARIS) models, a micro-costing approach for cost evaluation, and a Discrete-Event Simulation (DES) approach. The methodology is applied to the consultation for cancer treatment process. Simulation scenarios are established to conclude about the impact of HIS on patient pathway. We demonstrated that although high level HIS lengthen the consultation, occupation rate of oncologists are lower and quality of service is higher (through the number of available information accessed during the consultation to formulate the diagnostic). The provided method allows also to determine the most cost-effective ICT elements to improve the care process quality while minimizing costs. The methodology is flexible enough to be applied to other health-care systems.