What rare cancers have in common. The making of lists of (very) rare cancers and the coordination of medical work.

This article aims to understand why medical actors recently published lists of rare and very rare cancers. It studies four lists of rare and very rare cancers based on interviews with the main actors on these lists and an analysis of medical articles in which these lists were published. It argues that these lists constitute boundary objects whose aim is to deal with the organizational challenges raised by precision medicine, which imply increasing the coordination work between various types of actors. Our work therefore allows a better understanding of the functioning of the recursive standardization process of a boundary object and, by analyzing how the category of rarity is built at the intersection of both professional and nosographic principles, shows the intertwining of the biomedical, organizational, and political aspects on which rests the practice of contemporary precision medicine.

Chronicity and the patient's decision-making work. The case of an advanced cancer patient.

This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient's condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a 'negotiated reality'. We argue that the chronicity of advanced cancer patients' situation broadens the patients' scope for 'work', and we have called this specific type of patient's work 'decision-making work'. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians' work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.

Understanding the Barriers to Introducing Early Palliative Care for Patients with Advanced Cancer: A Qualitative Study.

Background: Palliative care is often underutilized or initiated late in the course of life-threatening illness. Randomized clinical Early Palliative Care (EPC) trials provide an opportunity for changing oncologists' perceptions of palliative care and their attitudes to referring patients to palliative care services. Aim: To describe French oncologists' perceptions of EPC and their effects on referral practices before a clinical EPC trial was launched. Design: A qualitative study involving semistructured face-to-face interviews. The data were analyzed using the Grounded Theory coding method. Setting/Participants: Thirteen oncologists and 19 palliative care specialists (PCSs) working at 10 hospitals all over France were interviewed. Most of them were involved in clinical EPC trials. Results: The findings suggest that referral to PCSs shortly after the diagnosis of advanced cancer increases the terminological barriers, induces avoidance patterns, and makes early disclosure of poor prognosis harder for oncologists. This situation is attributable to the widespread idea that palliative care means terminal care. In addition, the fact that the EPC concept is poorly understood increases the confusion between EPC and supportive care. Conclusion: Defining the EPC concept more clearly and explaining to health professionals and patients what EPC consists of and what role it is intended to play, and the potential benefits of palliative care services could help to overcome the wording barriers rooted in the traditional picture of palliative care. In addition, training French oncologists how to disclose "bad news" could help them cope with the emotional issues involved in referring patients to specialized palliative care.

Organisational factors influencing early clinical trials enrollment: Gustave Roussy experience.

PURPOSE: Enrolment process influences the likelihood of patients' inclusion in early clinical trials (ECT) through social, medical and organisational factors. PATIENTS AND METHODS: All patients referred from 2008 to 2016 to the Drug Development Department (DITEP) of Gustave Roussy (GR) were reviewed. Referring physician, organisational factors, medical and socioeconomic characteristics for patients were analysed. Multivariate analysis was performed with regard to those factors. A telephone survey was conducted on a sample of referring physicians located outside GR (N = 142). RESULTS: Between 2008 and 2016, 8694 requests were received with 49% from external physicians. Here, 4517 were male patients with a median age of 58 [49-66] years (range 18-85). Tumour types were gastrointestinal (28%), lung (19%), breast (9%) and gynaecologic (8%). Mean enrolment rate was 37% (ranging from 24 to 45%). From 2008 to 2016, the enrolment rate decreases from 39% to 24%. In the meantime, DITEP trials portfolio evolves with the part of precision medicine trials increase from 12% to 40%. Factors that were significantly associated with a lower likelihood of being enrolled were referral from an external physician (OR 0.15 s.16-0.21]) compared to a physician from DITEP and year of the request (2.74 [1.8-2.9] 2008 versus 2016). The enrolment rate and the number of patients addressed have a high variability regarding referring physicians, which is little explained by characteristics as training, previous experience or attitude regarding ECT. CONCLUSION: Beyond patients' individual characteristics, we show that organisational and professional factors have a major impact on likelihood of enrolment in ECT.