Disclosure of myelodysplastic syndrome diagnosis: improving patients' understanding and experience. (9th January 2013)

• Record Type: Journal Article
• Authors: Besson, Caroline; Rannou, Sandrine; Elmaaroufi, Hicham; Guirimand, Nicolas; Tresvaux du Fraval, Frédéric; Cartron, Laure; Jenny, Sarah; Festy, Patrick; Fenaux, Pierre; Leplège, Alain
• Is Part Of: European journal of haematology. Volume 90:Number 2(2013:Feb.)
• Page Start: 151
• Page End: 156
• Publication Date: 2013-01-09
• Subjects: Hematology -- Periodicals; Blood -- Diseases -- Periodicals; Blood -- Periodicals; 616.15005
• DOI: 10.1111/ejh.12048
• Languages: English
• ISSNs: 0902-4441

Abstract

<abstract abstract-type="main" id="ejh12048-abs-0001"> <title>Abstract</title> <sec id="ejh12048-sec-0001" sec-type="section"> <title>Purpose</title> <p>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.</p> </sec> <sec id="ejh12048-sec-0002" sec-type="section"> <title>Methods</title> <p>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.</p> </sec> <sec id="ejh12048-sec-0003" sec-type="section"> <title>Results</title> <p>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 (<italic>P </italic>=<italic> </italic>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.</p> </sec> <sec id="ejh12048-sec-0004" sec-type="section"> <title>Conclusion</title> <p>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.</p> </sec> </abstract>