Abstract
Context
The question of how best to disclose to patients the diagnosis of serious and/or incurable neurological diseases has been much explored, but that of when has received little rigorous study. The present study investigates this question in relation to multiple sclerosis (MS), a disease marked by its incurability, unpredictability and predilection for young adults.
Objectives
We aimed to ascertain the preferences of Greek MS sufferers concerning when they should ideally be informed they have the disease, and their preferences and reactions regarding disclosure of the diagnosis. Design, setting and patients 1200 Greek MS patients,members of the MS Society, were asked to complete a questionnaire regarding their experience of and attitudes towards receiving the diagnosis.
Design, setting and patients
1200 Greek MS patients,members of the MS Society, were asked to complete a questionnaire regarding their experience of and attitudes towards receiving the diagnosis.
Results
657 patients (55 %) responded. 91% favoured learning the diagnosis immediately, but only 44% had had this experience: 29% had been informed within 1–3 years, and 27% later. Interestingly, however, a significant minority (9 %) suggested a possible preference for delayed delivery of diagnosis and 23.2% stated that concealing the diagnosis would not lead to loss of confidence in their doctor.
Conclusion
This study—the largest of its kind—provides objective data supporting prompt disclosure of diagnosis as the clearly–expressed preference amongst most patients. Interestingly, however, the results also reemphasise the importance of a difficult medical art: attempting to judge whether an individual patient is one (of the 91%) preferring immediate disclosure—or of the nearly 1–in–10 (9%) who may not.
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Papathanasopoulos, P.G., Nikolakopoulou, A. & Scolding, N.J. Disclosing the diagnosis of multiple sclerosis. J Neurol 252, 1307–1309 (2005). https://doi.org/10.1007/s00415-005-0969-7
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DOI: https://doi.org/10.1007/s00415-005-0969-7