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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.
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Atitude do Pessoal de Saúde , Neoplasias Colorretais , Entrevistas como Assunto , Pesquisa Qualitativa , Humanos , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Feminino , Masculino , Procedimentos Clínicos , França , Pessoal de Saúde/psicologia , Equipe de Assistência ao Paciente , Pessoa de Meia-Idade , AdultoRESUMO
In paediatric oncology, genomics raises new ethical, legal and psychological issues, as somatic and constitutional situations intersect throughout the care pathway. The discovery of potential predisposition in this context is sometimes carried out outside the usual framework. This article focuses on the views of children, adolescents, and young adults (AYA) with cancer and their parents about their experience with genomic testing. Forty-eight semi-structured interviews were performed with children or AYAs with cancer and one of their parents, before and/or after receiving the genetic test results. The interviews were fully transcribed, coded and thematically analysed using an inductive method. This analysis revealed several themes that are key issues: perceived understanding and consenting, apprehension about the test outcomes (expectations and fears), perception and attitude towards incidental findings. The main expectation was an aetiological explanation. Children and AYAs also emphasised the altruistic meaning of genetic testing, while parents seemed to expect a therapeutic and preventive approach for their child and the rest of the family. Parents were more concerned about a family risk, while patients were more afraid of cancer relapse or transmission to their descendants. Both groups suggested possible feelings of guilt concerning family transmission and imaginary representations of what genomics may allow. Incidental findings were not understood by patients, while some parents perceived the related issues and hesitated between wanting or not to know. A multidisciplinary approach would be an interesting way to help parents and children and AYAs to better grasp the complexity of genetic and/or genomic testing.
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In pediatric oncology, genetic and genomic tests are proposed throughout the care pathway for many reasons (e.g., cancer characterization, identification of the most appropriate treatment, patient selection for clinical trials, identification of tissue/organ donors, or risk of relapse prediction). Despite the many different approaches (somatic or germline testing, targeted gene or genome sequencing), the implicated individuals are confronted with situations that may intersect and that are interesting to compare. No study has identified and analyzed the available works on these new practices in pediatric oncology. The aim of this narrative literature review was to describe the ethical and psychological perspectives of children with cancer, parents, and healthcare professionals when genetic or genomic testing is proposed as part of the cancer management. Eighteen articles met the inclusion criteria and were comprehensively coded using MAXQDA. Their analysis showed that concerning the subjective implications of genetic and genomic testing, the areas of ambivalence (desire of treatment, desire for knowledge, uncertainty, and guilt) reported by patients and their parents seem to mirror the healthcare professionals' concerns. The ethical and psychological issues about predisposition testing, long discussed in the context of hereditary retinoblastoma and Li-Fraumeni syndrome, represent a useful starting point for a wider discussion of a genetic and genomic testing pathway in pediatric oncology more broadly.
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The spectrum of childhood leukemia predisposition syndromes has grown significantly over last decades. These predisposition syndromes mainly involve CEBPA, ETV6, GATA2, IKZF1, PAX5, RUNX1, SAMD9/SAMD9L, TP53, RAS-MAPK pathway, DNA mismatch repair system genes, genes associated with Fanconi anemia, and trisomy 21. The clinico-biological features leading to the suspicion of a leukemia predisposition are highly heterogeneous and require varied exploration strategies. The study of the initial characteristics of childhood leukemias includes high-throughput sequencing techniques, which have increased the frequency of situations where a leukemia predisposing syndrome is suspected. Identification of a leukemia predisposition syndrome can have a major impact on the choice of chemotherapy, the indication for hematopoietic stem cell transplantation, and screening for associated malformations and pathologies. The diagnosis of a predisposition syndrome can also lead to the exploration of family members and genetic counseling. Diagnosis and management should be based on dedicated and multidisciplinary care networks.
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Síndrome de Down , Leucemia , Neoplasias , Criança , Humanos , Leucemia/diagnóstico , Leucemia/genética , Leucemia/terapia , Família , Predisposição Genética para Doença , Peptídeos e Proteínas de Sinalização IntracelularRESUMO
BACKGROUND: The MyPeBS study is an ongoing randomised controlled trial testing whether a risk-stratified breast cancer screening strategy is non-inferior, or eventually superior, to standard age-based screening at reducing incidence of stage 2 or more cancers. This large European Commission-funded initiative aims to include 85,000 women aged 40 to 70 years, without prior breast cancer and not previously identified at high risk in six countries (Belgium, France, Italy, Israel, Spain, UK). A specific work package within MyPeBS examines psychological, socio-economic and ethical aspects of this new screening strategy. It compares women's reported data and outcomes in both trial arms on the following issues: general anxiety, cancer-related worry, understanding of breast cancer screening strategy and information-seeking behaviour, socio-demographic and economic characteristics, quality of life, risk perception, intention to change health-related behaviours, satisfaction with the trial. METHODS: At inclusion, 3-months, 1-year and 4-years, each woman participating in MyPeBS is asked to fill online questionnaires. Descriptive statistics, bivariate analyses, subgroup comparisons and analysis of variations over time will be performed with appropriate tests to assess differences between arms. Multivariate regression models will allow modelling of different patient reported data and outcomes such as comprehension of the information provided, general anxiety or cancer worry, and information seeking behaviour. In addition, a qualitative study (48 semi-structured interviews conducted in France and in the UK with women randomised in the risk-stratified arm), will help further understand participants' acceptability and comprehension of the trial, and their experience of risk assessment. DISCUSSION: Beyond the scientific and medical objectives of this clinical study, it is critical to acknowledge the consequences of such a paradigm shift for women. Indeed, introducing a risk-based screening relying on individual biological differences also implies addressing non-biological differences (e.g. social status or health literacy) from an ethical perspective, to ensure equal access to healthcare. The results of the present study will facilitate making recommendations on implementation at the end of the trial to accompany any potential change in screening strategy. TRIAL REGISTRATION: Study sponsor: UNICANCER. My personalised breast screening (MyPeBS). CLINICALTRIALS: gov (2018) available at: https://clinicaltrials.gov/ct2/show/NCT03672331 Contact: Cécile VISSAC SABATIER, PhD, + 33 (0)1 73 79 77 58 ext + 330,142,114,293, contact@mypebs.eu.
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Neoplasias da Mama , Detecção Precoce de Câncer , Adulto , Idoso , Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer/métodos , Feminino , Humanos , Programas de Rastreamento , Pessoa de Meia-Idade , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Fatores SocioeconômicosRESUMO
An amendment to this paper has been published and can be accessed via a link at the top of the paper.
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The European Collaborative on Personalized Early Detection and Prevention of Breast Cancer (ENVISION) brings together several international research consortia working on different aspects of the personalized early detection and prevention of breast cancer. In a consensus conference held in 2019, the members of this network identified research areas requiring development to enable evidence-based personalized interventions that might improve the benefits and reduce the harms of existing breast cancer screening and prevention programmes. The priority areas identified were: 1) breast cancer subtype-specific risk assessment tools applicable to women of all ancestries; 2) intermediate surrogate markers of response to preventive measures; 3) novel non-surgical preventive measures to reduce the incidence of breast cancer of poor prognosis; and 4) hybrid effectiveness-implementation research combined with modelling studies to evaluate the long-term population outcomes of risk-based early detection strategies. The implementation of such programmes would require health-care systems to be open to learning and adapting, the engagement of a diverse range of stakeholders and tailoring to societal norms and values, while also addressing the ethical and legal issues. In this Consensus Statement, we discuss the current state of breast cancer risk prediction, risk-stratified prevention and early detection strategies, and their implementation. Throughout, we highlight priorities for advancing each of these areas.
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Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Neoplasias da Mama/genética , Consenso , Detecção Precoce de Câncer , Medicina Baseada em Evidências , Feminino , Predisposição Genética para Doença , Humanos , Programas de Rastreamento , Medicina de PrecisãoRESUMO
This article provides a dual perspective, both academic and operational, on the 2016 scientific and citizen consultation on breast cancer screening and the public health actions being developed. METHOD: In view of controversies around breast cancer screening, the Ministry of Health asked the French National Cancer Institute to organize this consultation to clarify the benefits and limitations of breast cancer screening, health objectives, organizing and tackling the health inequalities of this program. It has combined the setting up of an independent and multidisciplinary steering committee, a conference of citizens and professionals. It relied on the hearing of experts representing the trends of the controversy, on a technical and prospective report and on the analysis of nearly 500 online contributions. At the end of this process, the policy committee produced a report. RESULTS: In the end, two scenarios were presented, leading to a complete overhaul of the current screening process. As a result of this report, the Ministry announced the action plan for the renovation of organized breast cancer screening in 12 measures in April 2017. DISCUSSION: The discussion focuses on the consultation methodology as a tool for health democracy and on the levels of arbitration that led to the action plan. The objective is to reflect on the possible interactions between consultation and decision-making and to propose benchmarks for the development and improvement of this consultation.
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Confidencialidade/legislação & jurisprudência , Revelação/legislação & jurisprudência , Família , Predisposição Genética para Doença , Testes Genéticos/legislação & jurisprudência , Carcinoma/diagnóstico , Carcinoma/prevenção & controle , Saúde da Família/ética , Saúde da Família/legislação & jurisprudência , Relações Familiares , Feminino , França , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/prevenção & controle , Linhagem , Neoplasias Peritoneais/diagnóstico , Procedimentos Cirúrgicos ProfiláticosRESUMO
Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients' relatives on their behalf leads them to use this option sparingly.
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Revelação/ética , Predisposição Genética para Doença , Testes Genéticos/ética , Confidencialidade/ética , Revelação/legislação & jurisprudência , Família , França , Predisposição Genética para Doença/psicologia , Testes Genéticos/legislação & jurisprudência , HumanosRESUMO
This article provides a dual perspective, both academic and operational, on the 2016 scientific and citizen consultation on breast cancer screening and the public health actions being developed. METHOD: In view of controversies around breast cancer screening, the Ministry of Health asked the French National Cancer Institute to organize this consultation to clarify the benefits and limitations of breast cancer screening, health objectives, organizing and tackling the health inequalities of this program. It has combined the setting up of an independent and multidisciplinary steering committee, a conference of citizens and professionals. It relied on the hearing of experts representing the trends of the controversy, on a technical and prospective report and on the analysis of nearly 500 online contributions. At the end of this process, the policy committee produced a report. RESULTS: In the end, two scenarios were presented, leading to a complete overhaul of the current screening process. As a result of this report, the Ministry announced the action plan for the renovation of organized breast cancer screening in 12 measures in April 2017. DISCUSSION: The discussion focuses on the consultation methodology as a tool for health democracy and on the levels of arbitration that led to the action plan. The objective is to reflect on the possible interactions between consultation and decision-making and to propose benchmarks for the development and improvement of this consultation.
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Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Democracia , Política de Saúde , Saúde Pública , Tomada de Decisões , França , Humanos , Programas de Rastreamento , Política , Estudos ProspectivosRESUMO
Disclosure of genetic information within families is one of the longstanding questions under scrutiny in the field of genetics. Most of the probands entrusted with family disclosure succeed in this task, but there are still many problematic cases where it proves difficult. How can professionals help probands disclose this information? What levers can they activate to foster the diffusion of genetic information within families? In the context of a new legal framework concerning this question in France, this paper offers a comprehensive view of the process of genetic counselling in a cancer genetics department. Based on an ethnographic study, it focuses on the interactions between professionals and probands during each step of the testing procedures in order to identify key times when the issue can be addressed. The results show that the question of family disclosure needs to be addressed before, during and after the test. Greater awareness of this continuum among professionals could help them foster family disclosure by supporting the probands at each stage of the testing procedure.
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Aconselhamento Genético/métodos , Predisposição Genética para Doença , Revelação da Verdade , Comunicação , Família , França , Humanos , Oncologia/métodos , Neoplasias/genética , Prática Profissional , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Breast cancer is a major public health challenge. Organized mammography screening (OS) is considered one way to reduce breast cancer mortality. EU recommendations prone mass deployment of OS, and back in 2004, France introduced a national OS programme for women aged 50-74 years. However, in 2012, participation rate was still just 52.7%, well short of the targeted 70% objective. In an effort to re-address the (in) efficiency of the programme, the French National Cancer Institute has drafted an expert-group review of the ethical issues surrounding breast cancer mammography screening. DISCUSSION: Prompted by emerging debate over the efficiency of the screening scheme and its allied public information provision, we keynote the experts' report based on analysis of epidemiological data and participation rate from the public health authorities. The low coverage of the OS scheme may be partly explained by the fact that a significant number of women undergo mammography outside OS and thus outside OS criteria. These findings call for further thinking on (i) the ethical principles of beneficence and non-malfeasance underpinning this public health initiative, (ii) the reasons behind women's and professionals' behavior, and (iii) the need to analyze how information provision to women and the doctor-patient relationship need to evolve in response to scientific controversy over the risks and benefits of conducting mammographic screening. SUMMARY: This work calls for a reappraisal of the provision of screening programme information. We advocate a move to integrate the points sparking debate over the efficiency of the screening scheme to guarantee full transparency. The perspective is to strengthen the respect for autonomy allowing women to make an informed choice in their decision on whether or not to participate.