« Scientifiser son malheur » :

Dans le champ de l’éducation thérapeutique du patient (ETP), des malades chroniques, dits pairs-aidants ou patients-intervenants (PI), s’engagent pour collaborer avec des soignants afin de soutenir les apprentissages d’autres malades chroniques. Il est attendu que pour mener cette activité, les PI aient suivi une formation mais rien n’est défini en ce qui concerne ses modalités. Nous avons réalisé une formation qui visait l’acquisition de 5 compétences identifiées par un groupe de patients comme nécessaires à l’activité de PI. La formation proposée se présente comme émancipatoire au vu des caractéristiques suivantes : elle a été conçue et animée par des patients, elle a permis à des acteurs faibles de prendre conscience de la valeur de leurs savoirs, elle vise à transformer ceux qui se forment selon leurs propres normes, à ce qu’ils contribuent à construire la posture et les savoirs didactiques des PI, et à transformer les terrains qui vont les accueillir. Enfin elle bouleverse l’ordre social puisqu’elle vise à ce que des patients sortent de la place qui leur est historiquement assignée.In the field of therapeutic patient education (TPE), peer mentors are patients with chronic diseases who collaborate with caregivers to support learning by other patients with chronic diseases. While peer mentors are expected to get training for this, the modalities of such training remain undefined. We conducted a training whose goal was the acquisition of five competencies necessary to peer mentoring, as identified by a group of patients. The proposed training presents itself as emancipatory, in that it was designed and led by patients, makes weak stakeholders aware of the value of their knowledge, aims to transform those it trains according to their own standards and help them construct the position and didactic knowledge of peer mentors, and to transform the fields in which they will work. Finally, it disrupts the social order, aiming as it does to free patients from their historically-relegated role

Personalising haemophilia management with shared decision making

The current standard of care for treating people with haemophilia (PWH) in the developed world is prophylaxis with regular infusions of clotting factor concentrates. Gene therapy is being investigated as a new treatment paradigm for haemophilia and if approved would potentially eliminate the need for chronic, burdensome infusions. In recent years, shared decision making (SDM) has become increasingly common in patient care settings. SDM is a stepwise process that relies on reciprocal information sharing between the practitioner and patient, resulting in health care decisions stemming from the informed preferences of both parties. SDM represents a departure from the traditional, paternalistic clinical model where the practitioner drives the treatment decision and the patient passively defers to this decision. As the potential introduction of gene therapy in haemophilia may transform the current standard of care, and impact disease management and goals in unique ways, both practitioners and PWH may find their knowledge tested when considering the appropriate use of a novel technology. Therefore, it is incumbent upon haemophilia practitioners to foster an open, trusting, and supportive relationship with their patients, while PWH and their caregivers must be knowledgeable and feel empowered to participate in the decision making process to achieve truly shared treatment decisions

Perception des signes précoces d'hémarthrose: Vers une sémiologie personnelle issue des patients hémophiles sentinelles

International audienceL’hémophilies’exprimepardesaccidentshémorragiquesdontlessignescliniquessonttra- duits dans une sémiologie médicale. Le vécu de la maladie conduit les personnes hémophiles à percevoir des signes plus fins que ceux décrits par les professionnels. Certains patients sentinelles ont développé, par apprentissage personnel, la faculté de percevoir des signes précoces d’hémorragie. Ils ont élaboré une sémiologie personnelle qui leur permet- trait de réagir plus tôt et de limiter ainsi les conséquences des hémorragies. Objectif : Une recherche collaborative a cherché à identifier et à analyser la sémiologie personnelle des patients hémophiles sentinelles, puis à envisager ses applications. Méthode : Neuf entretiens approfondis ont permis de recueillir des expressions utilisées pour traduire les signes précoces d’hémarthroses, puis de les rassembler en familles de sensations issues des sciences de la sensorialité. Résultats : La perception des signes étant difficilement communicable, le recours à l’abstrait aide à la verbalisation. Sa conscientisation répond à un apprentissage par auto et alloformation. Discussion : Une catégorisation des signes précoces, issue de l’œnologie, permet d’élaborer une « sémiologie personnelle du patient ». L’identification de seuils sensoriels facilite la prise de décision d’autosoins. Conclusion : Cette recherche ouvre à des applications en éducation thérapeutique ainsi que des perspectives dans la relation patient-soignant

Co-construction et « perspective patient » : la démarche d’intervention du Pôle de ressources en éducation thérapeutique du patient d’Île-de-France

Introduction/Objectifs : Si la prise en compte des savoirs expérientiels des personnes malades chroniques est un des fondements de l’éducation thérapeutique, la concrétisation de relations de partenariat nécessite des apprentissages et de la transformation des pratiques des acteurs. Cet article présente la démarche d’intervention du Pôle de ressources en ETP – IdF pour soutenir le développement de pratiques coopératives entre professionnels et patients. Contributions/Description : À partir d’une description de la co-construction de deux projets pluri-partenariaux, nous expliciterons les éléments facilitant l’engagement des acteurs et la réalisation de solutions correspondant aux besoins des patients. Nous soulignons l’importance de la co-conception des projets ; des valeurs et principes communs ; de la gouvernance collective ; de l’animation d’espaces dialogiques d’analyse de pratiques ; des outils facilitant la coopération ; et d’une évaluation participative et formative. Discussion/Conclusion : La fonction de tiers « tercéisateur » exercée par le Pôle ETP et le rôle central de la « perspective patient » sont deux leviers du processus de co-construction. Au-delà des solutions matérielles en résultant, les effets immatériels sont le développement de l’empowerment des participants, dans une perspective individuelle, mais aussi potentiellement collective et organisationnelle

Perception des signes précoces d’hémarthrose: vers une sémiologie personnelle issue des patients hémophiles sentinelles

International audiencePerception of early signs of hemarthrosis: towards a personal semiology from patients with sentinel hemophilia. Introduction: Hemophilia is expressed by hemorrhagic stroke whose clinical signs are translated into a medical semiology. The experience of the disease leads hemophilia patients to perceive more subtle signs than those described by the professionals. Some sentinel patients have, through personal learning, developed the ability to perceive early signs of bleeding. They have developed a personal semiology that allows them to react sooner and therefore limit the consequences of bleeding. Objective: A collaborative study sought to identify and analyze the personal semiology of sentinel hemophilia patients, then envisage its applications. Method: Nine in-depth interviews made it possible to collect expressions used to translate the early signs of hemarthrosis, then gather them into a family of sensations from sensory science. Results: Because the perception of signs is difficult to communicate, using the abstract helps verbal-ization. Making it conscious meets the need of self-and hetero-learning. Discussion: A categorization of early signs, from oenology, makes it possible to develop a "personal patient semiology". The identification of sensorial thresholds facilitates self-care decision-making. Conclusion: This research opens up applications in therapeutic education and prospects in the patient-healthcare provider relationship.Introduction : L'hémophilie s'exprime par des accidents hémorragiques dont les signes cliniques sont tra-duits dans une sémiologie médicale. Le vécu de la maladie conduit les personnes hémophiles à percevoir des signes plus fins que ceux décrits par les professionnels. Certains patients sentinelles ont développé, par apprentissage personnel, la faculté de percevoir des signes précoces d'hémorragie. Ils ont élaboré une sémiologie personnelle qui leur permet-trait de réagir plus tôt et de limiter ainsi les conséquences des hémorragies. Objectif : Une recherche collaborative a cherché à identifier et à analyser la sémiologie personnelle des patients hémophiles sentinelles, puis à envisager ses applications. Méthode : Neuf entretiens approfondis ont permis de recueillir des expressions utilisées pour traduire les signes précoces d'hémarthroses, puis de les rassembler en familles de sensations issues des sciences de la sensorialité. Résultats : La perception des signes étant difficilement communicable, le recours à l'abstrait aide à la verbalisation. Sa conscientisation répond à un apprentissage par auto et alloformation. Discussion : Une catégorisation des signes précoces, issue de l'oenologie, permet d'élaborer une « sémiologie personnelle du patient ». L'identification de seuils sensoriels facilite la prise de décision d'autosoins. Conclusion : Cette recherche ouvre à des applications en éducation thérapeutique ainsi que des perspectives dans la relation patient-soignant

COVID-19 Health Crisis and Chronic Illness: Protocol for a Qualitative Study

International audienceBackground The acute nature of the COVID-19 pandemic has put a strain on health resources that are usually dedicated to chronic illnesses. Resulting changes in care practices and networks have had major repercussions on the experience of people with chronic disorders. Objective This paper presents the protocol of the Parcours, Associations, Réseau, Chronicité, Organisation, Usagers, Retour d’expérience, Soins (PARCOURS)-COVID study. The aim of this study is to evaluate the effects of reorganization of the health system on the usual care network of patients with chronic illness, which fosters and qualifies the quality and continuum of care provided. The first objective of this study is to document these patients’ experiences through transformations and adaptations of their network, both in the practical dimension (ie, daily life and care) and subjective dimension (ie, psychosocial experience of illness and relationship to the health system). The second objective of the study is to understand and acknowledge these reorganizations during the COVID-19 lockdown and postlockdown periods. The third objective is to produce better adapted recommendations for patients with chronic illness and value their experience for the management of future health crisis. Methods The PARCOURS-COVID study is a qualitative and participatory research involving patient organizations as research partners and members of these organizations as part of the research team. Three group of chronic diseases have been selected regarding the specificities of the care network they mobilize: (1) cystic fibrosis and kidney disease, (2) hemophilia, and (3) mental health disorders. Four consecutive phases will be conducted, including (1) preparatory interviews with medical or associative actors of each pathology field; (2) in-depth individual interviews with patients of each pathology, analyzed using the qualitative method of thematic analysis; (3) results of both these phases will then be triangulated through interviews with members of each patient’s care ecosystem; and finally, (4) focus groups will be organized to discuss the results with research participants (ie, representatives of chronic disease associations; patients; and actors of the medical, psychosocial, and family care network) in a research-action framework. Results The protocol study has undergone a peer review by the French National Research Agency’s scientific committee and has been approved by the research ethical committee of the University of Paris (registration number: IRB 00012020-59, June 28, 2020). The project received funding from August 2020 through April 2021. Expected results will be disseminated in 2021 and 2022. Conclusions Our findings will better inform the stakes of the current health crisis on the management of patients with chronic illness and, more broadly, any future crisis for a population deemed to be at risk. They will also improve health democracy by supporting better transferability of knowledge between the scientific and citizen communities. International Registered Report Identifier (IRRID) DERR1-10.2196/2872

FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders.

FranceCoag is an ongoing open prospective multicentre cohort project aimed at improving epidemiological knowledge about inherited bleeding disorders in France. The main objective of this article was to evaluate the project's progress as of the 30th December 2016. Between 1994 and this date, of the 10,047 patients included in the study, 384 (3.8%) were reported by clinicians to have died and 159 (1.6%) to be lost to follow-up. Among the remaining 9504 patients still being followed up, 5748 (60.5%) had haemophilia A, 1300 (13.7%) haemophilia B, 1980 (20.8%) von Willebrand Disease while 476 (5.0%) had another clotting factor deficiency (Factor I, II, V, combined V and VIII, VII, X, XI and XIII). The median age of the population was 32 years (Inter-quartile range (IQR) 18-50 years) at data extraction on December 30th, 2016. The subgroup of children (i.e., < 18 years old) with severe haemophilia and comprehensive information available since the first exposure to treatment was identified as the PUPs (Previously Untreated Patients) cohort. Data for the 643 children included in the PUPs' cohort had been collected since their birth. Follow-up data were collected by the clinicians in haemophilia treatment centres (HTC) every 12.9 months on median (IQR 11.4-21.3). In the PUPS cohort, data were updated every 6.2 months on median (IQR 3.7-11.7). A unique patient number assigned at study inclusion was kept at individual HTC by participating clinicians. The data collected included demographic, clinical, therapeutic and biological items on standard electronic forms. As of December 30th 2016, a plasma and serum samples was available for 2581 patients (27.1%)

Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

International audienceAbstract Introduction Health of people with severe haemophilia (PwSH) improves thanks to the advancements in haemophilia care, giving them more opportunities in occupational integration. However, there is little literature on the occupational integration of PwSH. Objectives The main objective of our study was to assess the occupational integration of PwSH and to compare it with that of the general population. The secondary objective was to study the association between individual characteristics (sociodemographic, clinical and psycho‐behavioural) and occupational integration of PwSH. Methods A multicentre, non‐interventional, cross‐sectional study was conducted in 2018–2020 on PwSH, aged over 18 and under 65 years and included in the FranceCoag registry. Measurements included indicators of occupational integration, sociodemographic, clinical and psycho‐behavioural characteristics. The indicators of occupational integration were compared with those of the general population, using indirect standardization. The data of the general population were available from the National Institute of Statistics and Economic Studies (INSEE). Determinants of occupational integration were explored using structural equation modelling. Results Of 1262 eligible people, 588 were included. PwSH had a lower employment rate than the general population (standardized ratio, .85; 95% CI, .77–.94). There were more PwSH at tertiary education level than expected (standardized ratio, 1.38; 95% CI, 1.17–1.61). HIV infection, poor physical health and mental health concerns were associated with a higher risk of unemployment in PwSH. Conclusion Employment rate of PwSH is lower than that of the general population despite their higher education level. Target interventions focusing on determinants of difficult occupational integration could be helpful for PwSH