title: 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.
authors.affiliation: Department of Neurology, University of Cologne, Cologne, Germany.
authors.forename: Catharine J
authors.initials: CJ
authors.lastname: Lewis
authors.affiliation: Department of Neurology, University of Cologne, Cologne, Germany.
authors.forename: Franziska
authors.initials: F
authors.lastname: Maier
authors.affiliation: Department of Neurology, University of Cologne, Cologne, Germany.
authors.forename: Carsten
authors.initials: C
authors.lastname: Eggers
authors.affiliation: Department of Neurology, University of Cologne, Cologne, Germany.
authors.forename: Esther A
authors.initials: EA
authors.lastname: Pelzer
authors.affiliation: Department of Stereotaxy and Functional Neurosurgery, University of Cologne, Cologne, Germany.
authors.forename: Mohammad
authors.initials: M
authors.lastname: Maarouf
authors.affiliation: Movement Disorders Unit, Department of Psychiatry and Neurology, University Hospital Center (CHU) of Grenoble, Grenoble, France.
authors.forename: Elena
authors.initials: E
authors.lastname: Moro
authors.affiliation: Department of Psychiatry, University of Toronto, University Health Network, Toronto, Canada.
authors.forename: Mateusz
authors.initials: M
authors.lastname: Zurowski
authors.affiliation: Department of Psychiatry and Psychotherapy, University of Cologne, Cologne, Germany.
authors.forename: Jens
authors.initials: J
authors.lastname: Kuhn
authors.affiliation: Research Unit Ethics, Institute for The History of Medicine and Medical Ethics, University of Cologne, Cologne, Germany.
authors.forename: Christiane
authors.initials: C
authors.lastname: Woopen
authors.affiliation: Department of Neurology, University of Cologne, Cologne, Germany. Electronic address: lars.timmermann@uk-koeln.de.
authors.forename: Lars
authors.initials: L
authors.lastname: Timmermann
mesh_terms: D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology*; D003072:Cognition Disorders / Q000209:etiology; D046690:Deep Brain Stimulation / Q000379:methods*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D019964:Mood Disorders / Q000209:etiology; D009460:Neurologic Examination; D010300:Parkinson Disease / Q000523:psychology* / Q000628:therapy*; D011788:Quality of Life; D012720:Severity of Illness Index; D012919:Social Behavior; D020531:Subthalamic Nucleus / Q000502:physiology*; D016896:Treatment Outcome
keywords: Caregivers; Parkinson's disease; Quality of life; Social functioning; Subthalamic stimulation