Survey from last years conference FYI


Posted by Delaine Inman , Apr 03,2001,09:10   Archive
I sent BEBRF question about the survey that was handed out at last years conference and asked what happened to findings. Here is the response I got.

"The questionnaire you filled out at the last conference was an experiment and not a scientific study that Mary Lou tried. Unfortunately, many of the patients seemed confused about their diagnosis - checked Meige, BEB and hemifacial spasm -(this could be because their doctors are confused). Also, Mary Lou left some questions out that she realized later she should have included. After compiling the results and going over it with the District Directors, they felt that the information was not accurate enough to print. It did bring to our attention that the majority of patients are confused about what disorder they actuarially have."

(Next e-mail from me.)
I'm confused by what you mean by how we checked the diagnosis. If you have BEB and it progresses to Meige what would be correct to call diagnosis? I've been saying BEB and Meige, is that wrong?

(The response back to me.)
"No, that's not wrong. But when they check BEB, Meige and hemifacial spasm, then that is wrong. Hemifacial spasm is a different disorder than Meige and BEB. Many patients (even sending in their patient fact sheet) check both BEB/Meige and hemifacial spasm. We end up coding them as not knowing their diagnosis. (PAI)."




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