Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S  Neurology  2000 Aug 8;55(3):388-92


Division of Neurology, Pennsylvania State College of Medicine, Hershey 17033,USA.

OBJECTIVES: To study patients with ALS to determine the following: 1) the relationship between physical function and quality of life (QOL); 2) the instruments that best reflect patients’ own ratings of QOL; and 3) whether spiritual/religious factors play a role in determining QOL.

METHODS: Theauthors prospectively studied 96 patients with ALS using several instruments,including the McGill Quality of Life (MQOL) instrument, the Idler Index of Religiosity, the Sickness Impact Profile (SIP)/ALS-19, and several measures of strength and physical function.

RESULTS: QOL as assessed by patients (MQOLsingle item score) did not correlate with measures of physical function and strength, but correlated with the total MQOL score (p < 0.0005), the psychologicaland existential subscores of MQOL (p < 0. 0005), the support subscore of MQOL (p = 0.001), and the total Idler score (p = 0.001). In contrast,correlations between SIP/ALS-19 and these measures were not significant,although SIP/ALS-19 correlated with measures of physical function and strength. CONCLUSIONS: QOL, as assessed by the patient with ALS, does not correlate with measures of strength and physical function, but appears to depend on psychological and existential factors, and thus may be measured well by the MQOL scale. Spiritual factors and support systems appear to play roles as well. SIP/ALS-19 is a good measure of physical function, but not of overallQOL.

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