A longitudinal study on quality of life and depression in ALS patient–caregiver couples

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Abstract
Objectives: To evaluate the modification of quality of life (QoL) and depression in a series of amyotrophic lateral sclerosis (ALS) patient–caregiver couples during a period of 9 months and compare them to patients’ ALS Functional Rating Scale (ALS-FRS). Methods: Depression was assessed with Zung Depression Scale (ZDS) and QoL with McGill Quality of Life Questionnaire (MQoL). Caregivers’ burden was assessed with Caregiver Burden Inventory (CBI), and patients’ feeling to be a burden with the Self-Perceived Burden Scale (SPBS). Results: Thirty-one ALS patient–caregiver couples were interviewed at baseline and after 9 months. The mean ALS-FRS score was 28.7 (SD 7) at baseline and 24.1 (6.9) at the second interview (p = 0.0001). Patients’ mean MQoL score slightly increased from 6.8 (1.6) to 7 (1.1) (p = 0.07); their ZDS score slightly increased (43.2 [8.7] at baseline and 45.7 [9.3] at the second interview) but they remained in the not depressed range. Caregivers’ mean MQoL score slightly decreased, and their mean ZDS increased from 38.9 (8.1) to 42.2 (8.7) (p = 0.02). The mean CBI score increased from 50.3 (17.6) to 55.8 (16.4) (p = 0.03). Conclusions: We found a substantial steadiness of quality of life and depression in patients with amyotrophic lateral sclerosis over a 9-month period, vs a significant increase of burden and depression of their caregivers.