Cited by 157Amyotrophic Lateral Sclerosis ResearchDementia and Cognitive Impairment ResearchNursing care and research

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Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life

Chiò, A., Vignola, A., Mastro, E., Giudici, A. Dei, Iazzolino, B., Calvo, A., Moglia, C., Montuschi, A.·2010·European Journal of Neurology

DOI 10.1111/j.1468-1331.2010.03016.x

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Abstract

Objective: To evaluate the frequency of neurobehavioral symptoms related to FTLD in a consecutive series of amyotrophic lateral sclerosis (ALS) patients and to assess their influence on patients’ and caregivers’ mood, burden, and quality of life. Methods: A total of 70 couples of ALS patients and their caregivers consecutively seen in our ALS clinic were separately interviewed using a battery of tests assessing frontotemporal‐related neurobehavioral symptoms, emotional status, and quality of life. Patients’ behavioral abnormalities were assessed with the Frontal Systems Behavior Scale (FrSBe). Caregiver burden was assessed with the Caregiver Burden Inventory (CBI). Results: According to caregivers’ evaluations, 34 (48.6%) patients had FrSBe pathological scores at the time of the interview. According to patients’ evaluation, 9 (12.9%) patients had pathological scores at the time of the interview. In caregivers’ assessment, at the time of the interview the most commonly impaired neurobehavioral domain was apathy (39 patients, 55.7%), followed by executive dysfunction (32, 45.7%) and disinhibition (18, 25.7%). Neurobehavioral symptoms were related to the presence of bulbar symptoms at the time of the interview, but not to patients’ age, gender, or physical status (ALS‐FRS score). Patients’ neurobehavioral symptoms were significantly related to lower caregivers’ quality of life, highest depression, and highest burden, both in univariate and in multivariable analyses. Conclusions: Neurobehavioral symptoms were present in 50% of our ALS patients and were related to bulbar symptoms. They have a profound negative impact on caregivers’ psychological status and were highly related with caregivers’ burden.

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Authors: Chiò, A., Vignola, A., Mastro, E., Giudici, A. D., Iazzolino, B., Calvo, A., Moglia, C., & Montuschi, A.
Affiliations: Azienda Ospedaliero Universitaria San Giovanni Battista (IT)
Corresponding author: Chiò, A.
ORCID: Chiò, A.
Iazzolino, B.
Calvo, A.
Moglia, C.
Venue: European Journal of Neurology
Publisher: Wiley
Published: 2010-09-13
Volume: 17
Issue: 10
Pages: 1298-1303
ISSN: 1351-5101 (ISSN-L)
1468-1331
DOI: 10.1111/j.1468-1331.2010.03016.x
OpenAlex: W1708684470
Cited by: 157
References: 32
Citations by year: 2026: 4 · 2025: 2 · 2024: 15 · 2023: 7 · 2022: 7 · 2021: 13 · 2020: 7 · 2019: 8 · 2018: 10 · 2017: 12 · 2016: 18 · 2015: 13 · 2014: 13 · 2013: 9 · 2012: 11
FWCI: 5.34
Type: journal article
Language: en
Open access: closed
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations: European Journal of Neurology (publishedVersion)
PubMed (publishedVersion)
Institutional Research Information System University of Turin (University of Turin) (submittedVersion)
Funders: McGill University
Regione Piemonte
Topics: Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Health Sciences › Nursing › Research and Theory › Nursing care and research
Keywords: amyotrophic lateral sclerosis, neurobehavioral symptoms, frontotemporal lobar degeneration, caregiver burden, caregiver quality of life, apathy, executive dysfunction, disinhibition, bulbar symptoms, depression, Frontal Systems Behavior Scale, Caregiver Burden Inventory
MeSH terms: Aged, Amyotrophic Lateral Sclerosis, Mental Disorders, Female, Humans, Male, Middle Aged, Quality of Life, Comorbidity, Caregivers, Cost of Illness, Frontotemporal Dementia

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Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life

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