The dynamics of quality of life in ALS patients and caregivers

Abbey R. Roach, Alyssa J. Averill, Suzanne C. Segerstrom, Edward J. Kasarskis

Research output: Contribution to journalArticlepeer-review

61 Scopus citations

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.

Original languageEnglish
Pages (from-to)197-206
Number of pages10
JournalAnnals of Behavioral Medicine
Volume37
Issue number2
DOIs
StatePublished - Apr 2009

Bibliographical note

Funding Information:
Acknowledgments This research was supported in part by grants from the ALS Association and the Cynthia Shaw Crispen Endowment. We would also like to thank Paul Gordon, MD, Martha Meister, RN, and Joan Werner, BA, for their work on this project.

Keywords

  • ALS
  • Disease progression
  • Quality of life
  • Well-being

ASJC Scopus subject areas

  • General Medicine

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