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The Dynamics of Quality of Life in ALS Patients and Caregivers

Roach, Abbey R., Averill, Alyssa J., Segerstrom, Suzanne C., Kasarskis, Edward J.·2009·Annals of Behavioral Medicine
DOI 10.1007/s12160-009-9092-9
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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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  • Quality of life may be increased and perceived carer burden decreased in MND family carers who find positive meaning and have a sense of hope.

    “Quality of life may be increased and perceived carer burden decreased in MND family carers who find positive meaning [13,14] and have a sense of hope [18].”

    From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [14]

    Citation [18] is attached to the claim about a sense of hope. The Discussion (page unavailable) reports that caregivers’ existential well-being was maintained, but our copy does not examine whether hope increases carers’ quality of life or decreases perceived burden. Searches for “hope” and related terms found no passage establishing that link. (LLM, conf=0.74)

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  • Distress levels in patient-carer couples are closely correlated.

    “shown the close correlation of distress levels in patient-carer couples [13,14].”

    From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [14]

    The Introduction reports that caregivers’ physical and mental health declined while their spouses’ quality of life remained stable. The Effects of Time and Sources of Variance sections analyze patients and caregivers separately; the passages found do not establish whether distress levels are closely correlated within patient–caregiver couples (searched for dyadic and patient–caregiver distress correlations). (LLM, conf=0.76)

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Research works printed but not linked: 5

  1. Krivickas LS, Shockley L, Saito T, Mitsumoto H. Home care for patients with ALS. In: Proceedings of the seventh international symposium on amyotrophic lateral sclerosis and motor neuron disease, October 30-November 1, 1995: Dublin, Ireland.
  2. Bromberg MB, Forshew D. Application of the schedule of the evaluation of individual quality of life (SEIQOL-DW) to ALS/ MND patients and their spouses. In: Proceedings of the ninth international symposium on amyotrophic lateral sclerosis and motor neuron disease; November 16-18, 1998; Munich, Germany
  3. Wooley JM, Ringel S. Caregiver quality of life in ALS: Relationship between patient health status and caregiver health- related quality of life, role satisfaction, and workforce participa- tion. In: Proceedings of the eighth international symposium on amyotrophic lateral sclerosis and motor neuron disease, Novem- ber 3-5, 1997; Glasgow, Scotland
  4. Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves QOL in patients with ALS. Neurology. 2005; 65: 1264-1267.
  5. Traynor B, Alexander M, Corr B, Frost E, Hardiman O. Effects of a multidisciplinary ALS clinic on survival. J Neurol Neurosurg Psychiatr. 2003; 74: 1258-1261.

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Authors
Roach, A. R., Averill, A. J., Segerstrom, S. C., & Kasarskis, E. J.
Affiliations
University of Kentucky (US)
Corresponding author
Roach, Abbey R.
ORCID
Venue
Annals of Behavioral Medicine
Publisher
Oxford University Press (OUP)
Published
2009-04
Volume
37
Issue
2
Pages
197-206
ISSN
  • 0742-5554 (ISSN-L)
  • 0883-6612
  • 1532-4796
DOI
10.1007/s12160-009-9092-9
OpenAlex
W2077101850
Cited by
81
References
62
Citations by year
2026: 2 · 2025: 4 · 2024: 5 · 2023: 2 · 2022: 3 · 2021: 3 · 2020: 4 · 2019: 4 · 2018: 7 · 2017: 6 · 2016: 5 · 2015: 6 · 2014: 4 · 2013: 5 · 2012: 6
FWCI
4.25
Type
journal article
Language
en
Open access
closed
Locations
  • Annals of Behavioral Medicine (publishedVersion)
  • PubMed (publishedVersion)
Funders
ALS Association
Topics
  • Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
Keywords
amyotrophic lateral sclerosis, quality of life, caregivers, disease progression, individual differences, physical decline, caregiver burden, age differences, gender differences, McGill Quality of Life Questionnaire, social quality of life
MeSH terms
Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Female, Health Status, Humans, Longitudinal Studies, Male, Middle Aged, Personality, Quality of Life, Reference Values, Time Factors, Caregivers, Disease Progression

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