Study on Subjective Quality of Life of Amyotrophic Lateral Sclerosis Patients at Home

Abstract

The purpose of this study was to investigate the subjective quality of life (QOL) of amyotrophic lateral scleros is (ALS) patients at home and to clarify what kind of factors were related to this QOL. We questionnaired 61 ALS patients at home from August to November in 1999.

As a result, the mean score for the subjective QOL of ALS patients was 28.8 (SD = 11.8). QOL score of ALS pati ents who had bodily pain or numbness, or who needed to be given care at night tended to be lower than that of the patients who didn't have these factors. While the attributes of care givers were not related to this QOL. The amount of hours of visiting nursing of social support resources tended to be related to the subjective QOL of ALS patients, that is, the longer , the higher.

These results suggest that it is possible to raise the subjective QOL of ALS patients by considering the way of giving better care to ALS patients and securing visiting nursing.