Quality of life for ventilator-dependent ALS patients and their caregivers

Seven ventilator-dependent ALS patients and eleven caregivers were intervie wed in order to assess the impact of ventilator-dependence on patients and their families. The ALS Care Database questionnaires were administered with special attention to components derived from the I Health Status Survey (S F-12) and ALS Quality-of-Life Index (ALSQLI) as well as the ALS Patient Car egiver Form. Six patients had difficulty communicating and one patient was totally unable to communicate. Patients had maximal limitation of daily act ivities as measured by The ALS QLI, yet a self-reported satisfactory qualit y-of-life. Caregivers were heavily burdened and their outside activities we re severely limited. (C) 1998 Published by Elsevier Science B.V. All rights reserved.