Purpose: The purpose of this study was to clarify the preparations and realities regarding emergency on physical condition among in-home amyotrophic lateral sclerosis (ALS) patients for effective countermeasure.
Methods: The participants were 72 patients with ALS who were treated at University Hospital A between 2011 and 2013, and 5 people involved with an ALS patient association. A questionnaire survey was conducted by mail. The study was approved by the University Ethics Committee.
Results: Out of 77 participants, 42 responded (55% response rate), of which 41 responses were valid. Seventeen patients had experienced an emergency sudden change in their conditions, and 24 had no such experience. Nine patients who had not had such an experience selected either "Not necessary " or "Not sure " when asked about their advanced directives. Reasons for these responses were "I'm fine at the moment " and "My symptoms are mild ". First contact at emergency was listed as "Not decided " by none who had experienced physical emergency and 10 patients who had not. The number of emergency episode was 1 in 11 patients, 2 in 2 patients, and 3 or more episodes in 2 patients.
Conclusions: The study findings showed that patients who had not experienced an emergency in their ALS were less aware and less prepared for their emergency than their counterparts with such an experience. The findings suggest the need for better education on early preparations for emergency in ALS symptoms.