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Ann Behav Med. 2004 Oct;28(2):119-25.

Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: the role of positive self-perception and religiosity.

Author information

  • 1Psychology Program, Penn State Harrisburg, Middletown, PA 17057-4898, USA. bab12@psu.edu

Abstract

BACKGROUND:

Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease with no known cure. Maintaining quality of life (QOL) as the disease progresses is an important treatment goal.

PURPOSE:

the purpose of this study is to identify factors that support QOL as ALS progresses.

METHODS:

Changes in QOL were monitored in 162 individuals with ALS at 3- to 4-month intervals. Forty-nine of the participants survived in the study for over 1 year and were included in a longitudinal comparison. The 49 long-term participants were younger and stronger at Time 1 than were the participants who died before reaching the 1-year point. The McGill Quality of Life Scale demonstrated a high and stable QOL despite physical deterioration.

RESULTS:

Patients maintained a positive self-perception of their health despite the physical deterioration. Over time, self-perception of health and religiosity were shown to be significantly correlated with QOL.

CONCLUSIONS:

Results support the need for better instrumentation to enable future studies to more precisely measure multiple dimensions of ALS-related QOL, to identify reference points for self-ratings of both health and QOL, and to capture the religious and spiritual mechanisms related to QOL as individuals face the end of life.

[PubMed - indexed for MEDLINE]
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