Reponses to the question “How do patients react?”
| • Most take it in their stride |
| • Generally not surprised, take it well |
| • Some are alarmed, most accept possibility with equanimity |
| • Quite calm (surprisingly) |
| • Makes no difference in majority of patients |
| • They understand epilepsy carries a risk of death and injury, some are terrified |
| • Matter of fact, pragmatic |
| • Reassured that it does seem overall rare |
| • Makes no difference in the majority of patients |
| • They react in a positive way and welcome being told all of the facts. They view it as important information they should be aware of |
| • No problems, however patients are selected. I suspect I might encounter problems if I did this on a routine basis. It is important to consider psychological morbidity versus very questionable benefit in morbidity in providing information |
| • Terrified |
| • Fearfully |
| • Anxious |
| • Astonishment |
| • Anxiety and resentment |
| • Surprised |
| • In my limited experience I can distinctly recall one young woman with epilepsy well controlled on monotherapy who was extremely distressed and resentful that SUDEP was discussed during her first consultation |
| • Acute distress – two patients never returned again! |
| • Young men who have never been ill, have had a first seizure, and then think they are going to die have catastrophic psychological reactions to SUDEP info. Most patients are fine about the info although it is not infrequent that they say “I really don’t want to know about that” |