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

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.