Neurobehavioral symptoms in ALS are negatively related to caregivers' burden and quality of life.
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.
Chiò
A
A
ALS Center, Department of Neuroscience, University of Torino, San Giovanni Battista Hospital, Torino, Italy. achio@usa.net
Vignola
A
A
Mastro
E
E
Giudici
A Dei
AD
Iazzolino
B
B
Calvo
A
A
Moglia
C
C
Montuschi
A
A
D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D015897:Comorbidity; D017281:Cost of Illness; D005260:Female; D057180:Frontotemporal Dementia / Q000453:epidemiology / Q000523:psychology*; D006801:Humans; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology / Q000523:psychology*; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*