Disclosure of the Diagnosis of a Haematological Malignancy: The Point of View From Patients with Myelodysplasic Syndromes

Trends over the last 40 years have led to a more complete disclosure of cancer-related information to the patients. Previous studies in non-haematological cancers have shown that patients want to receive information about their health as clearly as possible, and this includes limiting the use of medical jargon. In contrast to other neoplasms, haematological malignancies are associated with specific terminology that does not make the malignant nature of the disease clear to the patient. In order, to analyze the disclosure of hematological malignancies and the feelings of the patients, we underwent a study with the French association of patients with Myelodsyplastic Syndromes (MDS).

A four-page questionnaire with both open questions and tick-box answers was constructed. A test phase was conducted by a psychologist through 8 phone interviews. The questionnaire was then sent to the 150 members of the association ((Connâıtre et Combattre les Myélodysplasies)) between November 2009 and January 2010. 73 questionnaires were screened. To precise some ambiguous answers, a few patients were interviewed on the phone by the psychologist.

The answers on feelings after diagnosis disclosure were classified in two groups “serenity/neutrality” and “upset/obtuseness”. Among the 53 questionnaires with sufficient data to allow this classification, 22 belonged to the first group, the terms used were: “reassured, confidence, hope, calm, clear explanations”, or for the patients with neutral feelings “we shall see, I was not shocked”. In contrast, 31 patients expressed negative feelings about imminent death (5 cases) “fatal issue, beginning of the end, very short future”, a shock (6) “hit on the head, dazed”, a severe disease (5), incredulity (10 cases) “I thought it was about somebody else.” or mixed feelings (5) “severe disease, abandoned with a 6 months appointment”. This classification was not linked to age (median 70 years) but to gender: women more frequently reported a negative feeling than men (60% in the first group versus 30% in the second). We then compared the expectations of the patients concerning diagnosis disclosure with their experience (Table). Although the expectations did not differ between the two groups, there appeared a discrepancy between expectations and experience among patients with negative feelings concerning information given.

We then investigated the terms used by doctors and patients to qualify their diseases. Although patients mostly understood they had a “chronic bone marrow disease”, some complained about “a mystery”, and asked for the use of words “less difficult to understand, or of simple words”. Ten patients reported the use of “leukaemia” or “pre-leukemia”; they claimed for a strong distinction between MDS and leukaemia: “MDS, nobody knows, but leukaemia is very scary”. Eight patients (11%) pronounced or wrote the terms “cancer” or “pre-cancer”: “although nobody dared to pronounce this word, I think my disease is a cancer”, “doctors should say cancer or disease close to cancer because MDS nobody understands”. When “cancer” was associated with anxiety, it seemed to be due to questioning about whether or not their diseases were malignant.

Although patients ask doctors to behave with humanity, they ask them to give information that they can understand. To our knowledge, very few studies explored the expectations of the patients with haematological malignancy concerning diagnosis disclosure. It did not directly explore the question of the use of the words “cancer” or “leukaemia” in diagnosis disclosure. Our study reveals a discrepancy between the meanings of the terms used by doctors and their understanding by patients: although a precise terminology is used to inform patients, the frequent avoidance of the word “cancer” may lead to misunderstanding of the disease or to “nondisclosure” of the malignant disease.

No relevant conflicts of interest to declare.