ORIGINAL ARTICLE Disclosure of myelodysplastic syndrome diagnosis: improving patients’ understanding and experience Caroline Besson 1,2 , Sandrine Rannou 3 , Hicham Elmaaroufi 4 , Nicolas Guirimand 5 , Fr ed eric Tresvaux du Fraval 6 , Laure Cartron 6 , Sarah Jenny 7 , Patrick Festy 7 , Pierre Fenaux 8 , Alain Lepl ege 6 1 UF d’h ematologie clinique ambulatoire, H^ opital Bic^ etre, Assistance Publique des h^ opitaux de Paris (APHP), Universit e Paris XI F-94275; 2 EA1610, Ethique, Sciences, Sant e, Soci  et e; 3 H^ opital Bic^ etre, APHP; 4 Service d’h ematologie clinique, H^ opital militaire d’instruction Mohamed V, Universit e Mohamed V, Rabat, Maroc; 5 D epartement Sciences de l’ education, Universit e de Rouen, Orsay F-91405; 6 D epartement d’Histoire et de Philosophie des Sciences, Universit e Paris VII, Paris; 7 Association ‘Conna ^ ıtre et Combattre les My elodysplasies’, Paris; 8 Hopital Avicenne, APHP, Universit e Paris XIII, Bobigny Abstract Purpose: How a diagnosis of cancer is disclosed can affect psychological morbidity. Haematological malignancy specialised terminology may make the disclosure difficult. We analysed how disclosure of a diagnosis of myelodysplastic syndrome (MDS) is experienced by patients. Methods: Patients from the French MDS support group were questioned about their demographic and clinical characteristics, diagnosis disclosure circumstances as well as experiences and expectations. After a phase test, a written questionnaire was sent to the 150 members of the support group. Results: Of the 73 patients who returned a useable questionnaire, disclosure had been experienced negatively by 32 patients (45%). Only 53% of those patients were satisfied with the information provided compared with 80% of those who had positive/neutral feelings (P = 0.02). Overall, patients felt they should have been given fuller information at the time of disclosure. In retrospect, almost all patients (94%) thought that comprehensive, accurate information should be provided at disclosure, even if the truth might be hard to cope with. Patients reporting not having been given satisfactory information complained about a lack of perspective (3) or clarity (7), eight (11%) mentioned cancer during the interview, and four explicitly expressed that this word should be more frequently used. Conclusion: Many patients had experienced disclosure negatively, frequently finding that the information provided had been insufficient and feeling that MDS was not well understood as a disease. Haematologists disclosing diagnosis to patients with a blood malignancy may benefit from following the same guidelines as oncologists in delivering comprehensive, understandable information. Key words myelodysplastic syndrome; diagnostic disclosure; patients’ experience; ethics Correspondence Caroline Besson, MD, PhD, Service d’H ematologie, H^ opital Bic^ etre, 78 rue du G en eral Leclerc, 94275 Le Kremlin- Bic^ etre, France. Tel: +33 1 45 21 74 60; Fax: +33 1 45 21 28 47; e-mail: caroline.besson@bct.aphp.fr Accepted for publication 28 November 2012 doi:10.1111/ejh.12048 The physician–patient relationship has long been character- ised by a paternalistic attitude on the part of the physician, often resulting in only partial disclosure of any information that she/he thought patients might find ‘hard to cope with’ (1, 2). In recent years, the ‘growing place occupied by ques- tions of the body, health and life in human affairs’ (3) has led to a re-evaluation of what physicians tell patients and what they omit, especially when disclosing a diagnosis of cancer (4). The question, ‘Should patients be told when they have a serious disease?’ has evolved into ‘Should patients be told everything about their disease?’ (5). This occurs in a context in which not only patients’ satisfaction but also psy- chological morbidity has been found to be associated with communication practices at disclosure (6). Studies have shown that the key parameters in disclosure are the setting (7), how emotional support is offered and the precise way in which bad news is conveyed, that is, what information and how much of it is provided  notably © 2012 John Wiley & Sons A/S 151 European Journal of Haematology 90 (151–156)