BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease affecting the motor nervous system and currently lacking effective means of treatment. The focus of ALS treatment therefore lies in palliative treatment from a multidisciplinary team. Published findings regarding affective components and patients' perceived quality-of-life (QoL) as well as comparative reports of family members/caregivers remain equivocal. METHODS: In this study, 41 ALS patients and their relatives were enrolled in a study employing the 12-item ALS-Depression-Inventory (ADI-12) and the Munich quality-of-life dimensions list (MLDL). The ALS-functional rating scale (ALSFRS-R) was used to evaluate physical disabilities. RESULTS: The ADI-12 depression scale data identified nine patients with depressive disorders; the patients had satisfactory QoL outcomes on the MLDL. The results did not differ significantly between ALS patients and their relatives. CONCLUSIONS: Thus, in agreement with other studies, QoL and emerging depression do not automatically coincide with patients' physical impairments of the patients. This "well-being paradox" is currently not well understood, and further studies are needed to optimize the treatment of patients through the course of disease progression.
BACKGROUND:Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease affecting the motor nervous system and currently lacking effective means of treatment. The focus of ALS treatment therefore lies in palliative treatment from a multidisciplinary team. Published findings regarding affective components and patients' perceived quality-of-life (QoL) as well as comparative reports of family members/caregivers remain equivocal. METHODS: In this study, 41 ALSpatients and their relatives were enrolled in a study employing the 12-item ALS-Depression-Inventory (ADI-12) and the Munich quality-of-life dimensions list (MLDL). The ALS-functional rating scale (ALSFRS-R) was used to evaluate physical disabilities. RESULTS: The ADI-12 depression scale data identified nine patients with depressive disorders; the patients had satisfactory QoL outcomes on the MLDL. The results did not differ significantly between ALSpatients and their relatives. CONCLUSIONS: Thus, in agreement with other studies, QoL and emerging depression do not automatically coincide with patients' physical impairments of the patients. This "well-being paradox" is currently not well understood, and further studies are needed to optimize the treatment of patients through the course of disease progression.
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