Hematopoietic cell transplant nurse coordinators' perceptions of related donor care: a European survey from the EBMT Nurses Group.

Allogeneic haematopoietic cell transplantation (HCT) is a curative procedure for patients with haematological malignancies and immune deficiencies. A human leukocyte antigen (HLA) identical sibling is only available for 25-35% of patients in need. The improvement in haplo-identical transplantation has led to a marked increase in cell donation from relatives. Despite international recommendations, discrepancies in related-donors (RD) care exist between centres, particularly regarding medical suitability criteria, consenting procedures and donor follow-up. This European survey aimed to explore hematopoietic cell transplantation coordinators nurses' (HCT-CNs) perceptions of RD care, in particular the association with the presence or not of an independent unit (IU). Ninety-three HCT-CNs from seventy-six EBMT centres responded, representing 19 countries (response rate: 27%). Our results did not show a significant association between IU and HCT-CNs perceptions of related-donors care. The practices for RD care vary among centres regarding presence or not of an IU (48%), person caring for RD (haematologist in 54%, HCT physician in 17%, HCT-CNs in 20%), person to whom the results of HLA typing are communicated, use of a booklet for RD, follow-up or not and periodicity of follow-up. Qualitative data highlight the related-donation ethical issues and the need for improvement in RD care. HCT-CNs' main concerns were: the necessary confidentiality to insure the voluntary status of RD, the perceived conflict of interest felt by professionals when managing both patients and RD, plus the psychosocial aspects of related-donation. Even if there is a variety of a practice among centres, the presence of an IU is not significantly associated with an improvement in RD care.

Advance directives from haematology departments: the patient's freedom of choice and communication with families. A qualitative analysis of 35 written documents.

BACKGROUND: In France, advance directives are favourably perceived by most of the population, although the drafting rate is low. This ambivalence is challenging because advance directives are meant to promote the autonomy and freedom of choice of patients. The purpose of this study was to analyse the content of advance directives written by patients suffering from malignant haemopathies to better understand how patients put them into practice. These could be relevant as early as the initial diagnosis of haematological malignancies because of the uncertain course of the disease. METHODS: This was a multicentre, qualitative, descriptive study. The advance directives written by patients with malignant haemopathies treated in one of the six French hospital departments were included in the study from 01/06/2008 to 15/04/2016. A thematic analysis of the advance directives was performed by two researchers: a senior haematologist and a research assistant. RESULTS: The median age of the patients was 69. Most were women (sex ratio: 0.59), living as a couple (57%), with lymphoid pathologies (66%), who were still alive two years after the instructions were written (63%) and had nominated a health care proxy (88.6%). Free texts (62.9%) were richer in content than pre-defined forms. The advance directives were used in three ways: for a purely legal purpose, to focus on medical treatments or actions, or to communicate a message to the family. Three main themes emerged: (1) refusal of medical treatment (100%), in which patients express refusal of life-sustaining care (97.1%). The actual treatments or the moment when they should be limited or stopped were not always mentioned in detail. (2) A desire for effective pain relief to avoid suffering (57.1%) and (3) messages for their family (34.3%), such as funeral arrangements (17.1%) and messages of love or trust (14.3%). CONCLUSIONS: Patients who write advance directives are not necessarily at the end of their lives. Their content mainly conveys treatment wishes, although patients also use them to pass on personal messages to their close family. This emerging role of advance directives to communicate messages within the family should be valued, even if it is not their original purpose.

Current practices for screening, consent and care of related donors in France: Haematopoietic stem cell transplantation coordinator nurses' perceptions.

Haematopoietic stem cell transplantation-coordinating nurses (HSCT-CNs) play an important role in informing related donors (RDs) and in organising human leucocyte antigen (HLA) tests, pre-donation workup and stem cells collection. Our pilot study aimed to explore French HSCT-CNs' perceptions of RD care issues. Twenty-nine French HSCT adult units were sent a questionnaire on the subject of donation procedures, HSCT-CNs' data and their professional experience of related donation issues. Twenty-two HSCT-CNs returned a completed questionnaire, and 90% of HSCT units were involved to some degree in both patient and donor care. Responses indicated that the provision of information to potential donors prior to HLA tests was insufficient, while donors were given a medical consultation only during the pre-donation workup. Questions were raised about the consent and voluntary status of RDs. None of the HSCT teams organised a post-donation consultation, while 57% provided follow-up by phone or via a questionnaire. Our results draw attention to the conflict of interest experienced by HSCT-CNs when caring simultaneously for patients and donors. The specific psychosocial difficulties associated with becoming an RD are also highlighted. French HSCT-CNs' perceptions of related donation reveal many ethical and clinical problems that have yet to be fully explored. Data on this topic remain scarce, and our pilot study may contribute to the current debate on the organisation of RD care.

The impact of allogeneic-hematopoietic stem cell transplantation on patients' and close relatives' quality of life and relationships.

PURPOSE: Although evidence suggests considerable disruption to families, the impact of allo-Hematopoietic Stem Cell Transplantation (HSCT) on patients' partners and close relatives has not been sufficiently explored. The present mixed-methods study aimed to enlighten allo-HSCT effects on patients' and close relatives' quality of life (QOL) and their relationships. METHODS: Patients who received allo-HSCT between 2007 and 2010 (N = 58) and their close relatives (parents, partners and/or adult children) were asked to respond to an anonymous questionnaire including socio-demographic data, Likert-scale of the impact of HSCT on sexual, couple, family, professional and social life, as well as on perceived support. QOL of patients and close relatives was evaluated (by the FACT-BMT and by WHO-QOL-bref) as were the adjustments of the couples (patients/partners by the DAS). In-depth interviews were performed with patients and partners who consented to this proposition. RESULTS: Patients (N = 28) and close relatives (N = 48) reported fatigue, sleep and sexual problems, emotional distress and relationship difficulties. Patients were mainly concerned with « being a burden ¼ to their close relatives. Close relatives' main concerns were changes in marital and family dynamics, disruptions in daily routine tasks and the responsibility for being the main provider of physical and emotional care. These difficulties increased after HSCT - notably when patients have to face the long-term consequences of the procedure. CONCLUSION: HSCT has a negative impact on patients' partners and other close relatives' QOL. Data on this topic is still scarce and this study might pave the way for future research in this field and notably guide psychosocial interventions.