Myelodysplastic Syndromes Clinical Trial
Official title:
Evaluation of a Question Prompt List for Patients With Myelodysplastic Syndromes (QPL-MDS)
MDS are a diverse group of hematopoietic malignancies, which mainly occur in patients over 75
years of age. Incidence rate in 2012 in France was more than 6 cases per 100 000
person-years. MDS are characterized by ineffective haematopoiesis causing cytopenia, and by
leukemic transformation. The disease is heterogeneous, its pathophysiology complex and
clinical evolution variable.The few data available on MDS patients show how difficult it is
to understand MDS, its prognosis and the reasons for prescribing or not some treatments. In
the context of a highly complex potentially lethal disease such as MDS, it is of utmost
importance to optimize the information conveyed to patients. Particularly, 70.5% of MDS
patients surveyed in our developmental study would have preferred more information about
prognosis at diagnosis disclosure.
A simple intervention based on the use of a question prompt list (QPL), would greatly improve
the information process by helping patients to express their main concerns at their medical
consultations. Cultural differences may exist in the appraisal of QPLs and QPLs have not yet
been widely used in France.
However, in line with the previous results available in the literature and in a context a
priori favourable to the use of such an instrument, the investigators hypothesise that use of
a QPL will increase MDS patients' expressions of concerns and questions at their medical
consultations. Particularly the investigators assume that the discussion about prognosis will
be facilitated, without increasing anxiety because patients remain free to ask or not for
such information. The use of QPLs would also be a way to limit social inequalities related to
insufficient information and to encourage patient-doctor communication and meeting of patient
preferences which could lead to better health outcomes.
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