Development of Evidence-Based Practice Guidelines for Caregivers of Individuals with ALS and Cognitive Impairment: Pilot Study of an Educational Approach

Pennsylvania State University

Goal: This pilot study will employ a within-subjects repeated measures design in order to test the hypothesis that for caregivers of patients with ALS and FD, a supportive intervention program will improve caregiver QOL and decrease caregiver burden, compared to baseline.

Aims: To increase caregiver Quality of Life (QOL) and decrease caregiver burden for those who care for individuals with ALS and frontal dysfunction (FD)

Status:  A 59-item questionnaire was developed and validated, the ALS-Specific Quality of Life Instrument (ALSSQOL).  This was then shortened to a 50-item (46 scored items) revised instrument, the ALSSQOL-R, which was once again validated in a multi-center study [VIEW AND DOWNLOAD THE ALSSQOL-R MANUAL].