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The advent of new technologies has made it possible to identify genetic predispositions to myelodysplastic syndromes (MDS) and acute leukemias (AL) more frequently. The most frequent and best characterized at present are mutations in CEBPA, RUNX1, GATA2, ETV6 and DDX41 and, either in the presence of one of these mutations with a high allelic frequency, or in the case of a personal or family history suggestive of blood abnormalities such as non-immune thrombocytopenia, it is recommended to look for the possibility of a hereditary hematological malignancy (HHM). Indeed, early recognition of these HHMs allows better adaptation of the management of patients and their relatives, as allogeneic hematopoietic stem cell transplantation (HSCT) is very often proposed for these pathologies. According to current data, with the exception of the GATA2 mutation, the constitutional or somatic nature of the mutations does not seem to influence the prognosis of hematological diseases. Therefore, the indication for an allograft will be determined according to the usual criteria. However, when searching for a family donor, it is important to ensure that there is no hereditary disease in the donor. In order to guarantee the possibility of performing the HSC allograft within a short period of time, it may be necessary to initiate a parallel procedure to find an unrelated donor. Given the limited information on the modalities of HSC transplantation in this setting, it is important to assess the benefit/risk of the disease and the procedure to decide on the type of conditioning (myeloablative or reduced intensity). In view of the limited experience with the risk of secondary cancers in the medium and long-term, it may be appropriate to recommend reduced intensity conditioning, as in the case of better characterized syndromic hematological diseases such as Fanconi anemia or telomere diseases. In summary, it seems important to evoke HHM more frequently, particularly in the presence of a family history, certain mutations or persistent blood abnormalities, in order to discuss the specific modalities of HSC allografting, particularly with regard to the search for a donor and the evaluation of certain modalities of the procedure, such as conditioning. It should be noted that the discovery of HHM, especially if the indication of an allogeneic HSC transplant is retained, will raise ethical and psychological considerations not only for the patient, but also for his family. A multidisciplinary approach involving molecular biologists, geneticists, hematologists and psychologists is essential.

Allogeneic hematopoietic cell transplantation (allo-HCT), the only curative therapy for numerous hematological malignancies, carries a significant risk of morbidity and mortality. The patients and families’ expectations regarding the procedure, the prognosis uncertainties, as well as the existence of potential new therapeutic possibilities, lead to frequent use of intensive care. Even though the transplant physicians are highly skilled in acute care, their knowledge of palliative approach is limited, making the use of palliative care insufficient and often late. By promoting reflection on the proportionality of care and the patients’ quality of life, palliative care may contribute to the allo-HCT patients management. Nevertheless, obstacles to this approach remain. The objective of this work is to propose recommendations to promote the implementation of palliative care into transplant units., L’allogreffe de cellules hématopoïétiques, seule perspective curative pour certaines hémopathies malignes, comporte des risques de morbi-mortalité importants. Les attentes des patients et de leurs proches vis-à-vis de la procédure, les incertitudes pronostiques, ainsi que l’existence de nouvelles possibilités thérapeutiques, engendrent un recours fréquent, onéreux aux soins intensifs. Si les médecins greffeurs maîtrisent parfaitement les soins actifs, leur connaissance en ce qui concerne les soins palliatifs est limitée, rendant l’accès à ces soins très restreint et souvent tardif. Favorisant une réflexion sur la proportionnalité des soins et sur la qualité de vie des patients, les soins palliatifs peuvent contribuer à la prise en charge des patients allogreffés et à l’accompagnement de leurs proches. Néanmoins, des obstacles à cette approche demeurent. Cet article a pour objectif de proposer des recommandations pour favoriser l’intégration de la démarche palliative au sein des unités d’allogreffe.

Allogeneic hematopoietic cell transplantation (allo-HCT), the only curative therapy for numerous hematological malignancies, carries a significant risk of morbidity and mortality. The patients and families' expectations regarding the procedure, the prognosis uncertainties, as well as the existence of potential new therapeutic possibilities, lead to frequent use of intensive care. Even though the transplant physicians are highly skilled in acute care, their knowledge of palliative approach is limited, making the use of palliative care insufficient and often late. By promoting reflection on the proportionality of care and the patients' quality of life, palliative care may contribute to the allo-HCT patients management. Nevertheless, obstacles to this approach remain. The objective of this work is to propose recommendations to promote the implementation of palliative care into transplant units.

Since 2010 there has been an exponential increase of the number of transplants performed from related donors. The development of haploidentical transplants increases the resort to related-donation, which presents two main advantages: a less important financial cost and a faster availability of the graft. Standards for mandatory accreditation exist, but the adherence to these recommendations is not optimal: currently, different practices regarding the organizational modalities of care, recruitment criteria, qualification and follow-up of related donors have been observed among French transplant centers. The Francophone Society of Marrow Transplant and Cellular Therapy (SFGM-TC) has developed guidelines for the consent and the non-eligibility criteria for hematopoietic stem cell donors. A multidisciplinary group has devised a booklet as a medium to inform donors about hematopoietic cell donation and transplantation in a clear and accessible language. This paper provides recommendations on post-donation follow-up, taking into account both medical standards and organizational constraints of French centers. Some tools are proposed.

The development of haplo-identical transplants brings to an increased resort to related donation: from 2005 till 2015, this resort increased by 291 %. Beyond the less important financial costs, the related donation also presents the advantage of a faster availability of the donor, avoiding risk of relapse before the procedure.In spite of the existing recommendations, we notice a diversity of the practices among French centers as for the organizational modalities of care, for recruitment criteria, qualification and follow-up of related donors.French Society of Marrow Transplant and Cellular Therapy proposed recommendations concerning the consent and non-qualification criteria of related donors. A multidisciplinary group to facilitate the information about Hematopoietic stem cells donation and transplantation conceived a notebook.In the present article, we propose recommendations for post-donation follow-up, taking into account at the same time medical imperatives and organizational constraints of transplantation teams. Some tools are also presented., Le développement des greffes haplo-identiques amène à un recours de plus en plus important aux donneurs apparentés : de 2005 à 2015, ce recours s’est accru de 291%. Au-delà des coûts financiers moins importants, le don intrafamilial présente également l’avantage d’une disponibilité plus rapide du donneur, évitant ainsi des risques de rechute avant la procédure.En dépit des recommandations existantes, on constate une diversité des pratiques dans les différents centres français quant aux modalités organisationnelles de prise en charge, aux critères de recrutement, qualification et suivi des donneurs apparentés. La Société Française de Greffe de Moelle et Thérapie Cellulaire a fait des propositions concernant le consentement et les critères de non-qualification des donneurs apparentés de cellules souches hématopoïétiques. Un livret a été conçu par un groupe multidisciplinaire afin de faciliter l’information sur le don et sur l’allogreffe. Dans le présent article, prenant en compte à la fois les impératifs médicaux de surveillance et les contraintes organisationnelles des centres greffeurs, nous proposons des recommandations pour le suivi des donneurs apparentés. Quelques outils (documents d’information, questionnaires) sont présentés.

Providing information to living donors is first and foremost a legal obligation as well as an ethical one, not to mention necessary to health care provision. It's been shown that quality of information concerning the procedure's practical aspects, scheduling of clinical tests and examinations, withdrawing stem cells for the donation, post-donation symptoms, and support provided by healthcare teams, directly impacts the donor's quality of experience. Taking this into consideration our group decided it was essential to create an informational support for donors in the form of a booklet to be provided in different hematopoietic stem cell transplant centers across France. In September 2016 in Lille, France, the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC) organized the 7th allergenic hematopoietic stem cell transplantation clinical practices harmonization workshops. As part of these workshops, our group worked collectively to develop a basis of indispensable information to be included in the booklet and presented using clear and accessible language.

Informed consent is not restricted to clinical research and must be applied to high-risk care such as hematopoietic stem cell transplantation. If standardized informed consent might improve inequalities in medical practices between different transplantation centers, it is strongly recommended that it be adapted with an honest dialogue between physicians and patients and physicians and donors. In an attempt to harmonize clinical practices among French hematopoietic stem cell transplantation centers, the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC) held its sixth annual workshop series in September 2015 in Lille. This event brought together practitioners from across the country. The purpose of this paper is to highlight the French law concerning patients' rights and ethical practices for an informed consent process to be applied to care or research.

Within the context of the SFGM-TC's 6th workshop series on the harmonization of clinical practices, our workshop proposes a standardization of the informed consent process for hematopoietic stem cell donors and recipients leading up to an autologous or allogenic transplantation. All informed consent was for bone marrow or peripheral stem cell donors, and mononuclear/lymphocyte donors according to usual procedures. The informed consent for autologous and allogenic related or unrelated adults and pediatric transplantation patients have been included. A first step has been conducted for collecting in advance the informed consent forms used routinely in all francophone transplantation centers. In a second step, a comprehensive version has been re-written by a multidisciplinary team. For the purposes of understanding the risks and advantages, language has been carefully considered and streamlined. In the third step, texts were sent to stem cell transplantation experts, experts at the French biomedical agency (agence de la biomédecine [ABM]), law specialists, members of the ethical committee of the French society of hematology and several transplant recipients to be edited and proofread.

We conducted an exploratory study of young patients (#60; 25 years) in remission from hematologic malignancies to better understand their experiences of care, the impact of disease and therapeutics on their quality of life (assessed by the FACT-BMT) and on their mental state (assessed by the HADS). On the plan of research, the findings of this study confirm the relevance of the qualitative approach; on the plan of care, the need of interdisciplinary support for these patients in remission.

Contexte : l’empathie est un concept multi dimensionnel ayant une place importante dans le domaine médical. Depuis plusieurs années de nombreux travaux ont été publiés mettant en avance l’importance d’une pédagogie de l’empathie chez les étudiants en médecine. Actuellement, à la Faculté de Médecine de Paris Descartes, un module de « Formation à la Relation Thérapeutique » est obligatoire pour tous les étudiants de quatrième année et est composé d’un cours magistral, de groupes d’inspiration Balint, de séances de jeux de rôle et de consultations simulées (ECOS), et ceci dans le but de faire évoluer les capacités empathiques de ces étudiants. Objectifs : l’objectif principal de cette thèse est d’aborder la perception qu’ont les étudiants des groupes d’inspiration Balint proposés durant la première année d’externat, et d’identifier des éléments ayant pu influencer le vécu de ces groupes par les participants. Méthode : il s’agit d’une recherche qualitative par entretiens semi-dirigés auprès de 27 étudiants de quatrième année. Les entretiens ont été enregistrés et retranscrits intégralement. Une double lecture du verbatim a été réalisée et l’analyse du contenu a été effectuée selon la méthode de la théorie ancrée. Résultats : les étudiants identifient des apports de la participation aux groupes d’inspiration Balint sur leur capacité d’empathie. Plusieurs thèmes récurrents ont émergé, à savoir : une difficulté à conceptualiser l’empathie, avec des perceptions différentes des groupes d’inspiration Balint qui peuvent apparaitre comme un lieu de partage d’expérience, de confrontations des points de vue, un endroit où raconter ses difficultés à faire face à des difficultés relationnelles, où parler de la difficulté de trouver sa place d’externe à l’hôpital et de la quête d’un positionnement adéquat par rapport à la hiérarchie hospitalière. Nous avons également mis en évidence des attentes multiples vis-à-vis de ces groupes d’inspiration Balint, notamment le fait d’avoir un lieu où se livrer sans jugement, permettant de comprendre et réfléchir sur certaines situations et d’obtenir des conseils pour les appréhender. On retrouve enfin des perceptions très variables du rôle de l’animateur, professionnel pouvant apparaitre comme trop en retrait ou bien trop directif, et des vécus divers de la participation aux groupes selon le positionnement adopté par le leader. Conclusion : cette étude a permis l’identification des apports perçus par les étudiants suite à leurs participations aux groupes d’inspiration Balint. Cela a également mis en lumière les divergences pouvant exister dans certains cas entre les attentes des étudiants vis-à-vis des groupes et la position prise par les différents animateurs. Une explication plus détaillée sur l’objectif et la méthode de travail au sein de ces groupes nous parait devoir être dispensée aux étudiants à l’avenir pour permettre de minorer ces discordances. Nos résultats sont concordants avec ceux d’autres travaux mettant en évidence l’importance d’intégrer un enseignement concernant l’empathie de manière pérenne dans le cursus des études médicales en deuxième cycle.