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Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life
Author(s) -
Chiò A.,
Vignola A.,
Mastro E.,
Giudici A. Dei,
Iazzolino B.,
Calvo A.,
Moglia C.,
Montuschi A.
Publication year - 2010
Publication title -
european journal of neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.881
H-Index - 124
eISSN - 1468-1331
pISSN - 1351-5101
DOI - 10.1111/j.1468-1331.2010.03016.x
Subject(s) - apathy , medicine , caregiver burden , quality of life (healthcare) , disinhibition , amyotrophic lateral sclerosis , depression (economics) , mood , psychiatry , clinical psychology , disease , dementia , cognition , nursing , economics , macroeconomics
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.