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From the ALS Quality of Life Study Group (Dr. Robbins) and the Division of Neurology (Dr. Simmons), Penn State College of Medicine, Hershey; the Psychology Program (Dr. Bremer and S. Fischer), Penn State Capital College, Middletown; and the ALS Association, Greater Philadelphia Chapter (S.M. Walsh), Ft. Washington, PA.
Address correspondence and reprint requests to Dr. Z. Simmons, Division of Neurology, Penn State College of Medicine, Hershey Medical Center, Hershey, PA 17033; e-mail: zsimmons{at}psu.edu
OBJECTIVES: To study patients with ALS to determine how physical function, quality of life (QOL), and spirituality or religiousness change over time, and what relationship these changes have to one another.
METHODS: Sixty patients with ALS were studied prospectively. They were assessed at baseline, 3 months, and 6 months, using questionnaires designed to measure general quality of life (McGill Quality of Life questionnaire), religiosity (Idler Index of Religiosity), ALS-specific health-related quality of life (SIP/ALS-19), and ALS-specific function (ALS functional rating scale).
RESULTS: A two-way repeated measures multivariate analysis of variance revealed that both the passage of time and the specific QOL scales used were factors in predicting patient quality of life (F[1, 59]= 9.87, p < 0.003 and F[3, 177]= 16.90, p < 0.001) Despite a progressive decline in physical function as measured by the ALS-specific function score, the general QOL and religiosity scores changed little. In contrast, the ALS-specific health-related QOL score declined in parallel with the ALS-specific function score.
CONCLUSIONS: QOL in patients with ALS appears to be independent of physical function, which agrees with a previous cross-sectional study. The ALS-specific health-related QOL score is primarily a measure of physical function. QOL instruments that assess spiritual, religious, and psychological factors produce different results than those obtained using measures of physical function alone.
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