In the past, it was quite common for doctors not to tell people they had multiple sclerosis after making the diagnosis, so as to spare them anxiety or worry about the future.
Even today, some doctors still avoid such disclosure. New research from Bologna in Italy sheds important light on this question.
Researchers enrolled 229 people with MS or clinically isolated syndrome (a single attack not yet diagnosed as definite MS) in the study. Of these 229, 93 were unaware of their diagnosis, suggesting this practice on the part of treating doctors of not disclosing the diagnosis is still relatively common.
The diagnosis was then disclosed to these people, after measuring their quality of life and psychological state before disclosure. Interestingly, 30 days after this disclosure, measures of quality of life, anxiety and depression were better than before the patients knew the diagnosis, and this improvement in quality of life and psychological wellbeing persisted over the following two years.
These findings fit with what many PwMS say about finding out the diagnosis. While the diagnosis of MS has been described as one of the most life-altering diagnoses one can receive, many people are relieved to finally know what is wrong, and to have an explanation for what can be baffling and not always well-understood or appreciated symptoms.
While it is important to have this confirmation that PwMS really do need their doctors to be frank and honest with them, it is disappointing to note that, at least in this Italian clinic, over 40% of people with MS in the study had not been told the diagnosis prior to the study.
Anecdotal evidence from PwMS confirms that this is still common practice. This study emphasises the importance of early disclosure of the diagnosis to PwMS by their doctors.
This is even more important in the context of the findings of our own OMS research that the course of MS can be significantly improved with the adoption of the OMS lifestyle changes, and the earlier PwMS are told, the earlier they can change their situations.
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