title: Patient perspectives on informed decision-making surrounding dialysis initiation.
abstract: BACKGROUND
  Careful patient-clinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made.
  
  
  METHODS
  Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were examined with content analysis. In addition, informed decision-making (IDM) scores were created by summing patient responses (yes/no) to 10 questions about the decision-making.
  
  
  RESULTS
  The mean IDM score was 4.4 (of 10; SD = 2.0); 67% scored 5 or lower. Age at the time of decision-making (r = -0.27, P = 0.006), years of education (r = 0.24, P = 0.02) and presence of a warning about progressing to end-stage kidney disease (t = 2.9, P = 0.005) were significantly associated with IDM scores. Nearly 70% said that the risks and burdens of dialysis were not mentioned at all, and only one patient recalled that the doctor offered the option of not starting dialysis. While a majority (67%) said that they felt they had no choice about starting dialysis (because the alternative would be death) or about dialysis modality, only 21.2% said that they had felt rushed to make a decision. About one-third of the patients perceived that the decision to start dialysis and modality was already made by the doctor.
  
  
  CONCLUSIONS
  A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process.
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
authors.forename: Mi-Kyung
authors.initials: MK
authors.lastname: Song
authors.forename: Feng-Chang
authors.initials: FC
authors.lastname: Lin
authors.forename: Constance A
authors.initials: CA
authors.lastname: Gilet
authors.forename: Robert M
authors.initials: RM
authors.lastname: Arnold
authors.forename: Jessica C
authors.initials: JC
authors.lastname: Bridgman
authors.forename: Sandra E
authors.initials: SE
authors.lastname: Ward
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002755:Choice Behavior; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D011379:Prognosis; D006435:Renal Dialysis; D012648:Self Care; D055815:Young Adult
keywords: chronic kidney disease; decision-making; dialysis
references.citation: Am J Hosp Palliat Care. 2007 Dec-2008 Jan;24(6):515-21
references.pmid: 17601835
references.citation: Clin J Am Soc Nephrol. 2009 Oct;4(10):1611-9
references.pmid: 19808244
references.citation: Am J Kidney Dis. 2012 Apr;59(4):504-12
references.pmid: 22284441
references.citation: Health Promot Pract. 2009 Jul;10(3):328-32
references.pmid: 19574584
references.citation: Am J Kidney Dis. 2008 Aug;52(2):227-34
references.pmid: 18585836
references.citation: Clin J Am Soc Nephrol. 2011 Mar;6(3):605-12
references.pmid: 21330485
references.citation: Kidney Int. 2010 Sep;78(6):605-10
references.pmid: 20571474
references.citation: Med Anthropol. 2005 Oct-Dec;24(4):297-324
references.pmid: 16249136
references.citation: Nurs Res. 2013 Jan-Feb;62(1):45-9
references.pmid: 23114795
references.citation: Nephron Clin Pract. 2012;120 Suppl 1:c1-27
references.pmid: 22964563
references.citation: Soc Sci Med. 2007 Jun;64(11):2236-47
references.pmid: 17418924
references.citation: J Hosp Palliat Nurs. 2010 Sep 1;12(5):312-318
references.pmid: 20936087
references.citation: Res Nurs Health. 2010 Feb;33(1):77-84
references.pmid: 20014004
references.citation: Nephrol Dial Transplant. 2011 Nov;26(11):3671-7
references.pmid: 21382996
references.citation: Perit Dial Int. 2003 Nov-Dec;23(6):568-73
references.pmid: 14703198
references.citation: Am J Kidney Dis. 2012 Apr;59(4):495-503
references.pmid: 22221483
references.citation: J Am Geriatr Soc. 1975 Oct;23(10):433-41
references.pmid: 1159263
references.citation: Palliat Med. 2006 Dec;20(8):745-54
references.pmid: 17148529
references.citation: Clin J Am Soc Nephrol. 2010 Feb;5(2):195-204
references.pmid: 20089488
references.citation: Qual Health Res. 2005 Nov;15(9):1277-88
references.pmid: 16204405
references.citation: Res Nurs Health. 2006 Jun;29(3):199-211
references.pmid: 16676337
references.citation: J Ren Care. 2008 Sep;34(3):121-6
references.pmid: 18786078
references.citation: Oncol Nurs Forum. 2003 Jan-Feb;30(1):123-9
references.pmid: 12515990
references.citation: N Engl J Med. 2009 Oct 15;361(16):1539-47
references.pmid: 19828531
references.citation: Am J Kidney Dis. 2012 Mar;59(3):419-27
references.pmid: 22014401
references.citation: J Am Soc Nephrol. 2000 Jul;11(7):1340-1342
references.pmid: 10864592
references.citation: Adv Chronic Kidney Dis. 2010 Jul;17(4):368-77
references.pmid: 20610364
references.citation: J Am Geriatr Soc. 2011 Feb;59(2):304-8
references.pmid: 21275929
references.citation: BMJ. 2010 Jan 19;340:c112
references.pmid: 20085970
references.citation: Adv Chronic Kidney Dis. 2011 Nov;18(6):412-9
references.pmid: 22098659
references.citation: Nephron Clin Pract. 2010;116(3):c247-55
references.pmid: 20606486
references.citation: Am J Kidney Dis. 2003 Apr;41(4):723-7
references.pmid: 12666057
references.citation: Adv Chronic Kidney Dis. 2010 Jul;17(4):293-301
references.pmid: 20610356
references.citation: Kidney Int. 2005 Jul;68(1):378-90
references.pmid: 15954930
references.citation: Health Aff (Millwood). 2012 Feb;31(2):383-91
references.pmid: 22323169
references.citation: J Nephrol. 2010 Sep-Oct;23 Suppl 15:S11-5
references.pmid: 20872365
references.citation: Nurs Res. 2008 Mar-Apr;57(2):113-7
references.pmid: 18347483
references.citation: Gerontology. 2012;58(6):531-9
references.pmid: 22739454
references.citation: J Am Soc Nephrol. 2007 Oct;18(10):2758-65
references.pmid: 17855638
references.citation: J Clin Epidemiol. 1994 Nov;47(11):1245-51
references.pmid: 7722560