The Damocles project is led by Marie-Pierre Dann, Certified Clinical Nurse Specialist, Contact for Announcement, Follow-up and Interface - Clinical Hematology, Pitié-Salpêtrière site, and by Pr. Leblond - DMU ORPHé, APHP - Sorbonne University. It is funded by Force Hémato.

Every year, between 4000 and 5000 patients are diagnosed with chronic lymphocytic leukaemia (CLL). For about two thirds of them, this diagnosis is deeply unexpected and disturbing: they have no symptoms and had gone to the doctor or had tests done for a completely different reason (Flinn, Grever, 2004).

Half of these asymptomatic patients, who are still in a very early stage of the disease (stage 0 in the Rai system, stage A in the Binet system), will never even need treatment. In the vast majority of cases, once the diagnosis has been made and disclosed, these patients go home, with the next follow-up appointment scheduled several months (or even a year) later (Eichhorst et al., 2015).

The diagnosis disclosure nurses who follow up patients with CLL - a disease that remains serious and incurable - therefore only see these patients very sporadically, if at all, and for very long periods of time. Only those patients who eventually develop symptoms will then have much more sustained nursing and medical follow-up.

The hypothesis on which the Damocles project is based was therefore born from the observation that the medical follow-up offered to asymptomatic patients newly diagnosed with CLL is generally very limited. It seems then that it is not able to respond adequately to the many needs, questions and anxieties raised by such a diagnosis in these patients. 

The main objective of this research project is therefore to better understand what these needs, questions and anxieties may be, to be able to determine more precisely what type of care or follow-up would be able to provide a more appropriate response. In this perspective, the Damocles project invests, strictly speaking, in the field of nursing sciences, while enriching itself with contributions from several human and social sciences such as psychology, philosophy or sociology. The central problem of the project, centred on the experiences and needs of asymptomatic patients newly diagnosed with CLL, is thus enriched by a profoundly interdisciplinary work which will allow us to study the psychological aspects (the strong traumatic potential of this announcement; the possible passivation mechanisms of these patients) as well as the philosophical, epistemological and ethical issues (the forms of follow-up that should be made available to these patients; the ways of making and announcing the diagnosis).

The conclusions drawn from this research will be based on fieldwork carried out in collaboration with the French cooperative group (FILO), the Clinical Haematology Department of the Pitié-Salpêtrière Hospital, the SiRIC CURAMUS and, finally, the patient association of Support and Information for Chronic Lymphocytic Leukaemia and Waldenström Disease (SiLLC). This will involve developing and circulating a questionnaire among two cohorts of newly diagnosed asymptomatic CLL patients: diagnosed but untreated patients (who therefore form a "control" cohort, following the most common care pathway offered to these patients); and patients included in the Prevene therapeutic trial, who are on pre-emptive treatment with stage A at high risk of progression. This questionnaire will provide qualitative and quantitative data on the experiences and needs of these patients, as well as a comparative study between these two cohorts to better understand how and why offering a form of treatment at the earliest stages of the disease can impact on patients' experiences.  

Contacts :

Marie-Pierre Dann & Julia Tinland