title: [Deep brain stimulation - expectations and doubts. A nationwide questionnaire study of patients with Parkinson's disease and their family members].
abstract: BACKGROUND
  The aim of this questionnaire-based study was to determine the decision-making motives from Parkinson's patients and their family members for deep brain stimulation (DBS), which are crucial for the attitude towards this therapy and which should be considered during the clinical interview.
  
  
  METHODS
  The questionnaire was sent out nationwide to members of the German Parkinson Association. Patient and family specific data as well as information sources, doubts and expectations with respect to DBS were assessed.
  
  
  RESULTS
  A total of 582 patients and 476 family members answered the questionnaire, revealing that 96% of the patients and 91% of the family members already possessed information regarding DBS. While a large proportion of interviewees had specific expectations concerning DBS, more than two thirds expressed concerns regarding DBS; the most frequent with respect to intraoperative complications and stimulation-induced worsening of symptoms. The quantity of realistic patients and family expectations significantly correlated with a positive evaluation of DBS and doubts as well as unrealistic expectations of family members correlated with a negative attitude towards the operation.
  
  
  CONCLUSIONS
  The findings suggest that patients and their relatives organized in support groups indeed possess detailed information regarding DBS. However, for the acceptance of the treatment a timely elucidation about DBS as well as responding to the individual concerns by the consulting physician is essential.
authors.affiliation: Neurologische Klinik - Bewegungsstörungen und Neuromodulation, Heinrich-Heine-Universität, Medizinische Fakultät, UKD, Moorenstr. 5, 40225, Düsseldorf, Deutschland. martin.suedmeyer@uni-duesseldorf.de
authors.forename: M
authors.initials: M
authors.lastname: Südmeyer
authors.forename: J
authors.initials: J
authors.lastname: Volkmann
authors.forename: L
authors.initials: L
authors.lastname: Wojtecki
authors.forename: G
authors.initials: G
authors.lastname: Deuschl
authors.forename: A
authors.initials: A
authors.lastname: Schnitzler
authors.forename: B
authors.initials: B
authors.lastname: Möller
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003657:Decision Making; D046690:Deep Brain Stimulation / Q000523:psychology / Q000706:statistics & numerical data*; D005190:Family; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000453:epidemiology* / Q000235:genetics / Q000523:psychology / Q000628:therapy*; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data*; D010353:Patient Education as Topic / Q000706:statistics & numerical data; D015995:Prevalence; D011795:Surveys and Questionnaires
references.citation: Arch Neurol. 2011 Feb;68(2):165
references.pmid: 20937936
references.citation: J Rheumatol. 2002 Jun;29(6):1273-9
references.pmid: 12064846
references.citation: Nervenarzt. 2009 Jun;80(6):646-55
references.pmid: 19360386
references.citation: Med Care. 1993 Nov;31(11):1043-56
references.pmid: 7694013
references.citation: Mov Disord. 2001 May;16(3):448-58
references.pmid: 11391738
references.citation: J Surg Oncol. 2009 Oct 1;100(5):375-81
references.pmid: 19444815
references.citation: Age Ageing. 1997 Sep;26(5):353-7
references.pmid: 9351479
references.citation: N Engl J Med. 2003 Nov 13;349(20):1925-34
references.pmid: 14614167
references.citation: Arthritis Rheum. 2004 Aug 15;51(4):635-41
references.pmid: 15334438
references.citation: Brain. 2010 Sep;133(9):2664-76
references.pmid: 20802207
references.citation: Lancet Neurol. 2010 Jun;9(6):581-91
references.pmid: 20434403
references.citation: N Engl J Med. 2010 Jun 3;362(22):2077-91
references.pmid: 20519680
references.citation: Mov Disord. 2009 Jun 15;24(8):1154-61
references.pmid: 19412954
references.citation: Ann Rheum Dis. 1979 Oct;38(5):471-4
references.pmid: 518147
references.citation: N Engl J Med. 2006 Aug 31;355(9):896-908
references.pmid: 16943402
references.citation: Mov Disord. 2006 Jun;21 Suppl 14:S290-304
references.pmid: 16892449
references.citation: Brain. 2002 Mar;125(Pt 3):575-83
references.pmid: 11872614
references.citation: Fortschr Neurol Psychiatr. 2010 Mar;78 Suppl 1:S37-40
references.pmid: 20195941