TY - JOUR
T1 - Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis
T2 - The role of positive self-perception and religiosity
AU - Bremer, Barbara A.
AU - Simone, Ann Louise
AU - Walsh, Susan
AU - Simmons, Zachary
AU - Felgoise, Stephanie H.
PY - 2004
Y1 - 2004
N2 - 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.
AB - 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.
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U2 - 10.1207/s15324796abm2802_7
DO - 10.1207/s15324796abm2802_7
M3 - Article
C2 - 15454359
AN - SCOPUS:4744367414
SN - 0883-6612
VL - 28
SP - 119
EP - 125
JO - Annals of Behavioral Medicine
JF - Annals of Behavioral Medicine
IS - 2
ER -