ORLANDO—Patients often do not understand the terms clinicians use to describe their hematologic malignancies, such as myelodysplastic syndrome, which may lead to misunderstandings about their disease.
“Oncology nurses and doctors should not be scared to use the term ‘blood cancer’ or ‘bone marrow cancer,’” said Caroline Besson, MD, PhD, from the Université Paris Sud, Assistance Publique Hôpitaux de Paris Hôpital Bicêtre, France, at the 52nd American Society of Hematology annual meeting and exposition. “When patients are told they have myelodysplastic syndrome, they are not clear that it’s a cancer, and that makes huge anxiety about whether it is cancer or is not cancer. And patients are scared to ask the doctor.”
Besson and colleagues surveyed 150 members of Connaître et Combattre les Myélodysplasies, the French association of patients with myelodysplastic syndromes, from November 2009 to January 2010, aiming to analyze patients’ feelings and experiences concerning disclosure of information about their disease. The four-page questionnaire with open-ended questions and multiple-choice questions was tested through eight telephone interviews conducted by a psychologist. Seventy-three people returned the survey. Ambiguous answers were followed up with telephone interviews.
Researchers were able to classify 53 of the respondents as having positive or negative feelings about the disclosure of their disease. Twenty-two fell into the positive or neutral group, expressing serenity, reassurance, calm, and in receipt of clear explanations; 31 patients expressed negative feelings or were upset, such as having concern about imminent death, having only a short time to live, or the diagnosis being a shock and thinking the doctor must be talking to the wrong patient. Women were more likely to report negative feelings than men.
In comparing patients’ expectations concerning disclosure of the diagnosis with their experience, investigators found similarities in expectations between the positive and negative groups but a discrepancy between those expectations and the actual experience in patients with negative feelings. Only half of the patients believed that the physician provided full information, only half said the doctor adapted to their needs, and less than half felt reassured.
Younger patients reacted badly to being told they had a disease of the elderly. Patients also did not appreciate being told there is no known cure when there are treatments available. For the most part, patients understood they had a chronic bone marrow disease, but some complained about the disease being a mystery or difficult to understand. Many expressed that if the disease is cancer, physician should say the word.
The team concluded that although patients want physicians to behave with humanity, Besson said, they also want full information in terms they can understand.