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

Barbara A. Bremer, Ann Louise Simone, Susan Walsh, Zachary Simmons, Stephanie H. Felgoise

Research output: Contribution to journalArticle

33 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)119-125
Number of pages7
JournalAnnals of Behavioral Medicine
Volume28
Issue number2
DOIs
StatePublished - Jan 1 2004

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Amyotrophic Lateral Sclerosis
Self Concept
Quality of Life
Health
Neuromuscular Diseases

All Science Journal Classification (ASJC) codes

  • Psychology(all)
  • Psychiatry and Mental health

Cite this

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title = "Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: The role of positive self-perception and religiosity",
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.",
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Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis : The role of positive self-perception and religiosity. / Bremer, Barbara A.; Simone, Ann Louise; Walsh, Susan; Simmons, Zachary; Felgoise, Stephanie H.

In: Annals of Behavioral Medicine, Vol. 28, No. 2, 01.01.2004, p. 119-125.

Research output: Contribution to journalArticle

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