title: Preliminary development and validation of a new end-of-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life.
abstract: BACKGROUND
  The ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain.
  
  
  OBJECTIVE
  This paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life.
  
  
  METHODS
  Cognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness.
  
  
  RESULTS
  Preliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, p<0.01, n = 137) and expected relationships between EOLPRO and proximity to death and constipation demonstrated construct validity. Pre- and post-treatment EOLPRO scores moderately agreed (n = 14, κ = 0.52 [95% CI 0.19, 0.84]) supporting reliability. The measure's apparent lack of sensitivity to discriminate between treatment responders and non-responders may be confounded.
  
  
  CONCLUSIONS
  Based on the preliminary findings, the EOLPRO should be separated into 'personal' and 'financial' affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain.
authors.affiliation: Flinders Centre for Clinical Change and Health Care Research, Flinders University, Daw Park, South Australia, Australia.
authors.forename: Nikki
authors.initials: N
authors.lastname: McCaffrey
authors.affiliation: 2eResearch@Flinders, Central Library, Flinders University, Bedford Park, South Australia, Australia.
authors.forename: Pawel
authors.initials: P
authors.lastname: Skuza
authors.affiliation: Discipline of Palliative and Supportive Services, Flinders University, Daw Park, South Australia, Australia.
authors.forename: Katrina
authors.initials: K
authors.lastname: Breaden
authors.affiliation: Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
authors.forename: Simon
authors.initials: S
authors.lastname: Eckermann
authors.affiliation: Department of Palliative and Supportive Care, Mater Health Services, Brisbane, Queensland, Australia.
authors.forename: Janet
authors.initials: J
authors.lastname: Hardy
authors.affiliation: Southern Adelaide Palliative Services, Repatriation General Hospital, Daw Park, South Australia, Australia.
authors.forename: Sheila
authors.initials: S
authors.lastname: Oaten
authors.affiliation: Palliative Care Unit, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
authors.forename: Michael
authors.initials: M
authors.lastname: Briffa
authors.affiliation: Discipline of Palliative and Supportive Services, Flinders University, Daw Park, South Australia, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Currow
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D063868:Patient Outcome Assessment; D011594:Psychometrics; D011788:Quality of Life; D057566:Self Report
references.citation: J Palliat Med. 2009 Nov;12(11):1023-8
references.pmid: 19715452
references.citation: J Pain Symptom Manage. 2001 Sep;22(3):717-26
references.pmid: 11532585
references.citation: J Pain Symptom Manage. 2009 Jun;37(6):e7-9
references.pmid: 19500720
references.citation: BMJ. 1993 May 1;306(6886):1181-4
references.pmid: 8499826
references.citation: J Clin Nurs. 2009 Dec;18(23):3237-43
references.pmid: 19930083
references.citation: Am J Hosp Palliat Care. 2007 Oct-Nov;24(5):350-65
references.pmid: 17998406
references.citation: Am J Public Health. 1991 Apr;81(4):443-7
references.pmid: 2003621
references.citation: J Clin Oncol. 2012 Oct 10;30(29):3611-7
references.pmid: 22965960
references.citation: Qual Life Res. 2003 May;12(3):229-38
references.pmid: 12769135
references.citation: J Clin Epidemiol. 2007 Jan;60(1):34-42
references.pmid: 17161752
references.citation: Palliat Med. 1998 Jul;12(4):231-44
references.pmid: 9743822
references.citation: Clin J Pain. 2008 Mar-Apr;24(3):219-25
references.pmid: 18287827
references.citation: Br J Anaesth. 2008 Jul;101(1):17-24
references.pmid: 18487245
references.citation: J Pain Symptom Manage. 2011 Jun;41(6):1073-93
references.pmid: 21621130
references.citation: J Psychiatr Res. 1975 Nov;12(3):189-98
references.pmid: 1202204
references.citation: Pain Med. 2009 Mar;10(2):289-99
references.pmid: 19207233
references.citation: Palliat Med. 2014 Feb;28(2):151-7
references.pmid: 23698452
references.citation: J Pain Symptom Manage. 2001 Sep;22(3):727-37
references.pmid: 11532586
references.citation: CMAJ. 2006 Feb 28;174(5):627-33
references.pmid: 16505458
references.citation: J Neurol Sci. 2010 Feb 15;289(1-2):7-11
references.pmid: 19732911
references.citation: BMJ. 1995 Jan 21;310(6973):170
references.pmid: 7833759
references.citation: Eur J Cancer. 2006 Jan;42(1):55-64
references.pmid: 16162404
references.citation: J Pain Symptom Manage. 1996 Nov;12(5):273-82
references.pmid: 8942122
references.citation: J Epidemiol Community Health. 2005 May;59(5):342-5
references.pmid: 15831678
references.citation: Anticancer Res. 1990 Jan-Feb;10(1):109-12
references.pmid: 2334115
references.citation: J Pain Symptom Manage. 2011 Mar;41(3):558-65
references.pmid: 21131166
references.citation: Cancer. 1997 Nov 15;80(10):1973-80
references.pmid: 9366301
references.citation: Palliat Support Care. 2008 Sep;6(3):231-8
references.pmid: 18662416
references.citation: Palliat Med. 1997 Jan;11(1):3-20
references.pmid: 9068681
references.citation: BMC Palliat Care. 2005 Nov 12;4:7
references.pmid: 16283937
references.citation: J Pain Symptom Manage. 2009 Jan;37(1):23-32
references.pmid: 18504093
references.citation: Pain. 1983 Oct;17(2):197-210
references.pmid: 6646795
references.citation: Health Serv Res. 2007 Oct;42(5):1848-70
references.pmid: 17850523
references.citation: Pain Manag Nurs. 2008 Sep;9(3):120-30
references.pmid: 18706383
references.citation: J Chronic Dis. 1987;40(12):1129-33
references.pmid: 3680471
references.citation: J Palliat Care. 2009 Spring;25(1):61-7
references.pmid: 19445343
references.citation: Biol Psychiatry. 1998 Oct 15;44(8):775-7
references.pmid: 9798082
references.citation: J Rehabil Med. 2012 Sep;44(9):798-9; discussion 803-4
references.pmid: 22915046
references.citation: J Pain Symptom Manage. 2006 Feb;31(2):140-7
references.pmid: 16488347
references.citation: Pain. 1995 May;61(2):277-284
references.pmid: 7659438
references.citation: Biol Rev Camb Philos Soc. 2007 Nov;82(4):591-605
references.pmid: 17944619
references.citation: JAMA. 2000 Nov 15;284(19):2476-82
references.pmid: 11074777
references.citation: J Pain Symptom Manage. 2004 Dec;28(6):612-8
references.pmid: 15589087
references.citation: Qual Health Care. 1999 Dec;8(4):219-27
references.pmid: 10847883
references.citation: Qual Life Res. 2009 Nov;18(9):1263-78
references.pmid: 19784865
references.citation: Support Care Cancer. 2012 Nov;20(11):2879-93
references.pmid: 22410859
references.citation: Theriogenology. 2010 Jun;73(9):1167-79
references.pmid: 20138353
references.citation: Int J Nurs Stud. 2006 May;43(4):393-403
references.pmid: 16102767
references.citation: J Pain Symptom Manage. 2009 Mar;37(3):395-402
references.pmid: 18722748
references.citation: Nurse Res. 2003;11(2):7-18
references.pmid: 14708425
references.citation: BMJ. 2002 Mar 9;324(7337):606-7
references.pmid: 11884331
references.citation: Oncologist. 2007;12 Suppl 1:4-10
references.pmid: 17573451
references.citation: J Gerontol A Biol Sci Med Sci. 2010 Aug;65(8):880-6
references.pmid: 20351073
references.citation: Pain Med. 2010 Mar;11(3):337-46
references.pmid: 20030743
references.citation: J Palliat Med. 2001 Winter;4(4):457-64
references.pmid: 11798477
references.citation: J Am Geriatr Soc. 2003 Nov;51(11):1595-601
references.pmid: 14687389