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Annals of Behavioral Medicine
Published in: Annals of Behavioral Medicine 2/2009

01-04-2009 | Original Article

The Dynamics of Quality of Life in ALS Patients and Caregivers

Authors: Abbey R. Roach, M.S., Alyssa J. Averill, M.S., Suzanne C. Segerstrom, Ph.D., Edward J. Kasarskis, M.D.

Published in: Annals of Behavioral Medicine | Issue 2/2009

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Abstract

Background

Quality of life (QOL) in people with amyotrophic lateral sclerosis (ALS) and their caregivers may depend on disease progression, premorbid characteristics (e.g., personality or demographics), or idiosyncratic effects (e.g., life events unrelated to the disease). Furthermore, effects may differ for patients and caregivers; physical decline may impact the caregiver more than the patient.

Purpose

The present study examined QOL in ALS patients and their caregivers over the course of the illness.

Methods

Longitudinal data from ALS patients (N = 55) and caregivers (N = 53) yielded estimates of the sources of and changes over time in total QOL as well as individual domains (psychological existential, physical, and social) as measured by the McGill Quality of Life Questionnaire.

Results

For both patients and caregivers, about half of QOL variance emerged from stable individual differences. Passage of time did not affect QOL in patients, but total QOL and particularly QOL related to physical symptoms declined over time in caregivers. Gender was mostly unrelated to QOL in patients and caregivers, but younger caregivers had lower QOL across a number of domains.

Conclusions

Low QOL among ALS patients is likely due to pre-existing individual differences, whereas both individual differences such as demographics (e.g., age) and disease progression are likely to affect QOL among caregivers.
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Metadata
Title
The Dynamics of Quality of Life in ALS Patients and Caregivers
Authors
Abbey R. Roach, M.S.
Alyssa J. Averill, M.S.
Suzanne C. Segerstrom, Ph.D.
Edward J. Kasarskis, M.D.
Publication date
01-04-2009
Publisher
Springer-Verlag
Published in
Annals of Behavioral Medicine / Issue 2/2009
Print ISSN: 0883-6612
Electronic ISSN: 1532-4796
DOI
https://doi.org/10.1007/s12160-009-9092-9

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