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

S C Drexel,L Paracka,M Klietz,B Kopp,A Kutschenko,K Kollewe,F Wegner,D Dressler,F Lange

doi:10.1007/s00702-019-02109-6

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.

Highlights

MethodsWe obtained approval from the local Ethics Committee of Hannover Medical School (No 7927_BO_K_2018), and all patients as well as their caregivers gave written informed consent
Dystonia is a chronic movement disorder characterized by abnormal twisted postures, sustained muscle hyperactivity, and pain (Dressler and Benecke 2005)
We examined caregiver burden in a group of dystonia patients and their caregivers, together with the health-related quality of life (HR-QoL) of patients and their caregivers

Summary

Methods

We obtained approval from the local Ethics Committee of Hannover Medical School (No 7927_BO_K_2018), and all patients as well as their caregivers gave written informed consent. We enrolled 114 patients with dystonia and their caregivers at Hannover Medical School. Inclusion criteria were defined as adult age of patient and caregiver, neurologically confirmed diagnosis of idiopathic dystonia and a nonprofessional caregiving situation at home. We performed a univariate regression model for the association of average SF-36 scores with sum scores of investigated predictors (Supplement Table 1). We performed a univariate regression model for the association of CBI scores with sum scores of investigated predictors (Supplement Table 2). To explore significant differences between the group of burdened and unaffected caregivers, we used an unpaired t test with independent variables for the evaluated predictors of caregiver burden.

Results

Discussion

Conclusion