Disclosure of myelodysplastic syndrome diagnosis: improving patients' understanding and experience.

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.