Damocles Project
Clinical Sciences in Nursing
The Damocles Project is led by Marie-Pierre Dann, Certified Clinical Nurse Specialist, Referral, Follow-up and Interface - Clinical Haematology, Pitié-Salpêtrière Site, and by Prof. Leblond – DMU ORPHé, APHP – Sorbonne University. It is funded by Force Hémato.
Every year, between 4,000 and 5,000 patients are diagnosed with chronic lymphocytic leukaemia (CLL). For around two-thirds of them, this diagnosis is completely unexpected and upsetting: they have no symptoms and went to see their doctor or had tests done for a completely different reason (Flinn, Grever, 2004).
Half of these asymptomatic patients, who are still at 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 announced, these patients return home, with the next check-up scheduled several months (or even a year) later (Eichhorst et al., 2015).
The nurses responsible for monitoring patients with CLL – a disease that remains serious and incurable – therefore see these patients only very sporadically, if at all, over very long periods of time. Only patients who eventually develop symptoms will then receive much more intensive nursing and medical follow-up.
The hypothesis on which the Damocles project is based therefore arose from the observation that the medical follow-up offered to newly diagnosed asymptomatic CLL patients is generally very limited. It therefore seems unlikely to adequately address the many needs, questions and anxieties raised by such a diagnosis in these patients.
The primary objective of this research project is therefore to gain a better understanding of what these needs, questions and anxieties might be, in order to then be able to determine more precisely what type of care or follow-up would be best suited to addressing them. With this in mind, the Damoclès project focuses specifically on the field of nursing, while drawing on contributions from several humanities and social sciences such as psychology, philosophy and sociology. The central issue of the project, which focuses on the experiences and needs of newly diagnosed asymptomatic CLL patients, is thus enriched by a deeply interdisciplinary approach that will make it possible to study the psychological aspects (the highly traumatic potential of this announcement; the possible mechanisms of passivation in 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 at the Pitié-Salpêtrière Hospital, SiRIC CURAMUS and, finally, the patient association for Support and Information on Chronic Lymphocytic Leukaemia and Waldenström’s Macrophageemia (SiLLC). The aim will be to develop and distribute a questionnaire among two cohorts of newly diagnosed asymptomatic CLL patients: patients who have been diagnosed but not treated (who therefore form a “control” cohort, following the most common course of care offered to these patients); and patients included in the Prévène therapeutic trial, who are undergoing pre-emptive treatment with a high risk of progression at stage A. This questionnaire will provide qualitative and quantitative data on the experiences and needs of these patients, and will enable a comparative study between these two cohorts to be conducted in order to better understand how and in what ways offering a form of treatment in the earliest stages of the disease can impact patients’ experiences.