Caregiver burden and health-related quality of life in idiopathic dystonia patients under botulinum toxin treatment: a cross-sectional study

Abstract

Dystonia is a chronic movement disorder that is associated with a reduction in health-related quality of life (HR-QoL) and restriction of activities of daily living. Botulinum neurotoxin (BT) improves disease-specific HR-QoL by reducing abnormal movements, postures, and pain. We examined the burden of the corresponding primary caregiver as a potential important factor for disease management and HR-QoL of dystonia patients under treatment with BT. 114 patients with focal, segmental, or generalized dystonia were recruited, together with 93 corresponding caregivers, whose burden was investigated using the Caregiver Burden Inventory. In addition, all participants were assessed for cognitive impairment, depression, anxiety, alexithymia, and HR-QoL. Only a small proportion of caregivers suffered from caregiver burden. Despite BT therapy, patients' HR-QoL was decreased compared to the age-matched general German population. Psychological symptoms, notably anxiety, and depression correlated significantly with reduced HR-QoL. Our data imply that caregiver burden emerged to be an issue in subgroups of dystonia patients. Furthermore, HR-QoL of dystonia patients is reduced even under optimized BT treatment in a specialized center.

Keywords: Anxiety; Botulinum toxin; Caregiver burden; Depression; Dystonia; Quality of life.

Fig. 1

Health-related quality of life (HR-QoL) measured by Short Form 36 in patients with dystonia and their caregivers compared to the age-matched general German population. Bar graph comparing the HR-QoL of our study patients (light grey) and caregivers (black) with the general German population (data from 2003) (white). All SF-36 subscales are significantly reduced in the dystonia patients compared to the German age-matched population. Caregivers HR-QoL did not show significant differences in comparison to the German age-matched population. *p < 0.001