Parkinson's disease patients with subthalamic stimulation and carers judge quality of life differently

Abstract Background Quality of life (QoL) improves under subthalamic deep brain stimulation (STN-DBS) in Parkinson's disease (PD), whereas social functioning may be disrupted. This disruption could negatively influence the family dynamic, leading to different perceptions of the STN-DBS outcome by patients and caregivers. Methods We recruited 34 PD patients for this prospective, controlled trial, 28 of whom were examined preoperatively, three months and one year after STN-DBS surgery. The primary outcome was QoL. We compared the patients' ratings and caregivers' proxy QoL ratings. The secondary outcome was social functioning. Additionally, neurological, neuropsychiatric and cognitive domains were analyzed. Changes were analyzed with repeated-measures ANOVA. Regression analysis was used to determine the association between QoL and social functioning. Results Patients' QoL improved significantly under STN-DBS ( p = .003). At baseline, patients' and caregivers' QoL ratings were similar. However, one year postoperatively, QoL ratings differed significantly ( p = .010), whereby QoL was rated worse by caregivers. Social functioning was positively influenced during the first months postoperatively, but did not improve longitudinally. One year postoperatively, social functioning was significantly associated with QoL ratings (patients: p = .004, caregivers: p = .002). Motor scores significantly improved, whereas verbal fluency and apathy worsened. Conclusions Unequal perception of QoL between patients and caregivers exists under STN-DBS. The fact that social functioning does not improve longitudinally is perhaps due to patient's higher levels of apathy and reduced motivation following surgery. Our findings stress the importance of considering caregiver's input in DBS patients' outcomes and the need for pre-operative preparation.