ABSTRACT
INTRODUCTION: Qualitative research on the perceptions of healthcare professionals involved in cancer care about their respective roles in the patient care pathway is limited. Therefore, the aim of this qualitative study was to document these perceptions. METHODS: A multidisciplinary team that included patient researchers constructed a semi-structured interview guide on the perceptions of the colorectal cancer care pathway by professionals. Interviews were conducted with healthcare professionals from two French hospitals that manage patients with colorectal cancer. Then, the interviews were fully transcribed and analysed by the whole multidisciplinary team. RESULTS: Thirteen healthcare professionals were interviewed (six nurses, four physicians, one psychologist, one social worker and one secretary). They described the colorectal care pathway using a great lexical diversity and listed a significant number of professionals as taking part in this pathway. Among the people mentioned were healthcare professionals working inside and outside the hospital, family members and non-conventional medicine practitioners. However, they did not spontaneously mention the patient. Their views on the role of the referring physician, the general practitioner and the patient were further explored. The interviews highlighted the coordination difficulties among the various professionals, particularly between general practitioners and hospital teams. These data provided interesting elements for developing a tool to help coordination among professionals. CONCLUSIONS: This preliminary study, with its participatory design, brings interesting elements of reflection on the care pathway for patients with colorectal cancer. It will continue through the creation of a larger participatory project. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were included in all steps of this study. This transdisciplinary project was coordinated by a group composed of three patient partners, two healthcare professionals and two humanities and social sciences researchers. Their knowledge of the patient's perspective on the care pathway enriched discussions from the study design to results analysis.
Subject(s)
Attitude of Health Personnel , Colorectal Neoplasms , Interviews as Topic , Qualitative Research , Humans , Colorectal Neoplasms/psychology , Colorectal Neoplasms/therapy , Female , Male , Critical Pathways , France , Health Personnel/psychology , Patient Care Team , Middle Aged , AdultABSTRACT
Multidisciplinary team meetings are a current international practice in cancer care, but to date, few data exist on the specificity of its practice in hematology.In this manuscript, we present the result of the first national study, realized with quantitative and qualitative methods in France, which brings new insights in order to improve the collegial decision-making process.To improve the effectiveness of MDTMs, the needs to focus on complex cases, to enhance patient centeredness and teamwork are relevant aspects, and a specific focus on hematological particularities is warranted to truly improve process.Background Understanding the Multidisciplinary team meetings (MDTMs) process in different medical specialties facilitates the identification of core factors supporting effective MDTM work. Our mixed-methods study explores the participants' perceptions of hematology MDTMs.Design Online questionnaires collected data concerning the decision-making process, benefits and inconveniences of MDTMs for both patients and professionals. Semi-directive phone interviews were conducted and analyzed, thereby supplying qualitative data.Results A total of 205 professionals responded to the questionnaire and 22 participated in the qualitative interviews. The data indicate the unique characteristics of hematology, including a specific definition of collegiality, the frequent solicitation of expert advice and the anticipation of treatment even prior to the occurrence of MDTMs. Additional information concerning patients' wishes and psychosocial conditions are also needed. Participants emphasize the subjective aspects and the impact of the climate of MDTMs on medical decisions.Conclusion Although MDTMs are recognized to be a valuable tool, organizational and relational issues may interfere with their efficiency.To improve the effectiveness of MDTMs, the needs to focus on complex cases, to enhance patient centeredness and teamwork are relevant aspects. A specific focus on hematological particularities might be warranted to truly improve the collegial decision-making process in the context of hematology.
Subject(s)
Hematology , Patient Care Team , Humans , France , Surveys and QuestionnairesABSTRACT
BACKGROUND: The first COVID-19 wave started in February 2020 in France. The influx of patients requiring emergency care and high-level technicity led healthcare professionals to fear saturation of available care. In that context, the multidisciplinary Ethics-Support Cell (EST) was created to help medical teams consider the decisions that could potentially be sources of ethical dilemmas. OBJECTIVES: The primary objective was to prospectively collect information on requests for EST assistance from 23 March to 9 May 2020. The secondary aim was to describe the Cell's functions during that period. RESEARCH DESIGN: This observational, real-time study of requests for Cell consultations concerned ethical dilemmas arising during a public health crisis. The EST created a grid to collect relevant information (clinical, patient's/designated representative's preferences and ethical principles strained by the situation), thereby assuring that each EST asked the same questions, in the same order. PARTICIPANTS AND RESEARCH CONTEXT: Only our university hospital's clinicians could request EST intervention. ETHICAL CONSIDERATIONS: The hospital Research Ethics Committee approved this study (no. CER-2020-107). The patient, his/her family, or designated representative was informed of this ethics consultation and most met with EST members, which enabled them to express their preferences and/or opposition. FINDINGS/RESULTS: 33 requests (patients' mean age: 80.8 years; 29 had COVID-19: 24 with dyspnea, 30 with comorbidities). 17 Emergency Department solicitations concerned ICU admission, without reference to resource constraints; others addressed therapeutic proportionality dilemmas. DISCUSSION: Intervention-request motives concerned limited resources and treatment intensity. Management revolved around three axes: the treatment option most appropriate for the patient, the feasibility of implementation, and dignified care for the patient. CONCLUSIONS: COVID-19 crisis forced hospitals to envisage prioritization of ICU access. Established decision-making criteria and protocols do not enable healthcare professionals to escape ethical dilemmas. That acknowledgement highlights ethical risks, enhances the added-value of nursing and encourages all players to be vigilant to pursue collective deliberations to achieve clear and transparent decisions.
Subject(s)
COVID-19 , Ethics Consultation , Aged, 80 and over , Ethics Committees, Clinical , Female , Health Personnel , Humans , Male , MoralsABSTRACT
Allogeneic hematopoietic stem cell transplantation (HCT) and CAR-T cells therapy are treatments with curative aim for certain hematological malignancies, refractory or relapse. Nevertheless, they carry the risk of morbidity and mortality and may have a significant psychosocial impact, particularly for HCT. It is therefore necessary to identify psychological difficulties and social problems, as well as the patient's resources, and those of his entourage, in order to improve his overall management. The objective of this evaluation is not to pose contraindications to treatments, but to adapt the personalized care project. This identification must be carried out early on in the pre-HCT assessment journey to enable the implementation of appropriate actions by the various care providers. Based on a review of the literature, we designed a psychosocial data collection grid that can be initiated in pre-transplant and updated by accompanying the patient at each stage of follow-up (discharge from hospital, day-hospital follow-up, D100 evaluation). This grid is divided into 3 axes: socio-family context, psychological and somatic aspects. This tool allows the traceability of the interventions of different professionals and is a support for multidisciplinary exchanges.
Subject(s)
Bone Marrow Transplantation , Hematopoietic Stem Cell Transplantation , Humans , Social Vulnerability , Neoplasm Recurrence, Local , Societies, Medical , T-LymphocytesABSTRACT
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.
Subject(s)
Hematologic Diseases , Hematologic Neoplasms , Hematopoietic Stem Cell Transplantation , Leukemia , Humans , Genetic Predisposition to Disease , Hematologic Neoplasms/genetics , Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation/methods , Leukemia/genetics , Leukemia/therapy , Transplantation Conditioning/methodsABSTRACT
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.
Subject(s)
Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation/adverse effects , Palliative Care , Advance Directives , Allografts , Attitude of Health Personnel , Bacterial Proteins , Child , Clinical Decision-Making , Clinical Deterioration , Glucosyltransferases , Health Care Surveys/methods , Health Care Surveys/statistics & numerical data , Hematopoietic Stem Cell Transplantation/psychology , Humans , Interdisciplinary Communication , Interprofessional Relations , Palliative Care/organization & administration , Palliative Care/psychology , Prognosis , Qualitative Research , Quality of Life , Societies, Medical , Terminal CareABSTRACT
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.
Subject(s)
Hematopoietic Stem Cell Transplantation , Tissue Donors , Allografts , Family , Haplotypes/genetics , Histocompatibility , Humans , Informed Consent , Interdisciplinary Communication , Living Donors , Tissue and Organ Procurement/methods , Tissue and Organ Procurement/standardsABSTRACT
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.
Subject(s)
Hematopoietic Stem Cell Transplantation , Living Donors/education , Pamphlets , France , Hematopoietic Stem Cell Transplantation/adverse effects , Hematopoietic Stem Cell Transplantation/ethics , Hematopoietic Stem Cell Transplantation/legislation & jurisprudence , Humans , Societies, MedicalABSTRACT
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.
Subject(s)
Bone Marrow Transplantation , Cell- and Tissue-Based Therapy , Consensus Development Conferences as Topic , Informed Consent , Bioethical Issues , Bone Marrow Transplantation/ethics , Bone Marrow Transplantation/legislation & jurisprudence , Cell- and Tissue-Based Therapy/ethics , Communication , France , Hematopoietic Stem Cell Transplantation/ethics , Hematopoietic Stem Cell Transplantation/legislation & jurisprudence , Humans , Informed Consent/ethics , Informed Consent/legislation & jurisprudence , Physician-Patient Relations/ethics , Societies, Medical , Tissue Donors/ethics , Tissue Donors/legislation & jurisprudenceABSTRACT
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.
Subject(s)
Consensus Development Conferences as Topic , Consent Forms/standards , Hematopoietic Stem Cell Transplantation/standards , Societies, Medical/standards , Tissue Donors , Adult , Child , Family , France , Hematopoietic Stem Cells , Humans , Lymphocytes , Pilot Projects , Validation Studies as TopicABSTRACT
The information process may be conceived as an acte of care. Taking into account its' subjective aspects brings into play the notions of "expertise" and "transparency". The complexity of hematopoietic stem cell transplantation allow analyzing patients' information ethical and clinical issues.
Subject(s)
Informed Consent , Patient Education as Topic , Hematopoietic Stem Cell Transplantation , Humans , Nurse-Patient RelationsABSTRACT
We conducted an exploratory study of young patients (<â25âyears) 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.