Health Outcome Prioritization in Alzheimer's Disease: Understanding the Ethical Landscape.
Alzheimer’s disease
dementia
ethics
health priorities
Journal
Journal of Alzheimer's disease : JAD
ISSN: 1875-8908
Titre abrégé: J Alzheimers Dis
Pays: Netherlands
ID NLM: 9814863
Informations de publication
Date de publication:
2020
2020
Historique:
pubmed:
28
7
2020
medline:
9
9
2021
entrez:
28
7
2020
Statut:
ppublish
Résumé
Dementia has been described as the greatest global health challenge in the 21st Century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, and political challenges about healthcare resource allocation, what health improvements matter to patients, and how they are measured. This study highlights the complexity of the ethical landscape, relating particularly to the balances that need to be struck when allocating resources; when measuring and prioritizing outcomes; and when individual preferences are sought. Health outcome prioritization is the ranking in order of desirability or importance of a set of disease-related objectives and their associated cost or risk. We analyze the complex ethical landscape in which this takes place in the most common dementia, Alzheimer's disease. Narrative review of literature published since 2007, incorporating snowball sampling where necessary. We identified, thematized, and discussed key issues of ethical salience. Eight areas of ethical salience for outcome prioritization emerged: 1) Public health and distributive justice, 2) Scarcity of resources, 3) Heterogeneity and changing circumstances, 4) Knowledge of treatment, 5) Values and circumstances, 6) Conflicting priorities, 7) Communication, autonomy and caregiver issues, and 8) Disclosure of risk. These areas highlight the difficult balance to be struck when allocating resources, when measuring and prioritizing outcomes, and when individual preferences are sought. We conclude by reflecting on how tools in social sciences and ethics can help address challenges posed by resource allocation, measuring and prioritizing outcomes, and eliciting stakeholder preferences.
Sections du résumé
BACKGROUND
Dementia has been described as the greatest global health challenge in the 21st Century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, and political challenges about healthcare resource allocation, what health improvements matter to patients, and how they are measured. This study highlights the complexity of the ethical landscape, relating particularly to the balances that need to be struck when allocating resources; when measuring and prioritizing outcomes; and when individual preferences are sought.
OBJECTIVE
Health outcome prioritization is the ranking in order of desirability or importance of a set of disease-related objectives and their associated cost or risk. We analyze the complex ethical landscape in which this takes place in the most common dementia, Alzheimer's disease.
METHODS
Narrative review of literature published since 2007, incorporating snowball sampling where necessary. We identified, thematized, and discussed key issues of ethical salience.
RESULTS
Eight areas of ethical salience for outcome prioritization emerged: 1) Public health and distributive justice, 2) Scarcity of resources, 3) Heterogeneity and changing circumstances, 4) Knowledge of treatment, 5) Values and circumstances, 6) Conflicting priorities, 7) Communication, autonomy and caregiver issues, and 8) Disclosure of risk.
CONCLUSION
These areas highlight the difficult balance to be struck when allocating resources, when measuring and prioritizing outcomes, and when individual preferences are sought. We conclude by reflecting on how tools in social sciences and ethics can help address challenges posed by resource allocation, measuring and prioritizing outcomes, and eliciting stakeholder preferences.
Identifiants
pubmed: 32716354
pii: JAD191300
doi: 10.3233/JAD-191300
pmc: PMC7592677
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
339-353Subventions
Organisme : Wellcome Trust
Pays : United Kingdom
Organisme : Wellcome Trust
ID : 203132/Z/16/Z
Pays : United Kingdom
Organisme : Medical Research Council
ID : MC_PC_17215
Pays : United Kingdom
Organisme : Department of Health
ID : IS-BRC-1215-20005
Pays : United Kingdom
Organisme : Wellcome Trust
ID : 104825/Z/14/Z
Pays : United Kingdom
Références
Lancet Neurol. 2008 Apr;7(4):362-7
pubmed: 18339351
BMC Med Ethics. 2018 Dec 6;19(1):94
pubmed: 30522485
Aging Clin Exp Res. 2016 Apr;28(2):249-55
pubmed: 26076908
Dementia (London). 2016 Jul;15(4):578-95
pubmed: 24742877
J Med Ethics. 2017 Dec;43(12):852-856
pubmed: 28798225
Alzheimers Dement. 2008 Jul;4(4):305-9
pubmed: 18631983
Front Neurol. 2010 Jun 28;1:4
pubmed: 21188250
Br J Psychiatry. 2011 Nov;199(5):417-22
pubmed: 21947653
QJM. 2011 Nov;104(11):913-20
pubmed: 21768167
Trials. 2015 Sep 01;16:394
pubmed: 26341114
Int J Epidemiol. 2001 Jun;30(3):427-32; discussion 433-4
pubmed: 11416056
Arch Neurol. 2008 Nov;65(11):1509-17
pubmed: 19001171
J Intern Med. 2014 Mar;275(3):229-50
pubmed: 24605807
Clin Neuropathol. 2009 Jan-Feb;28(1):40-5
pubmed: 19216219
Scand J Caring Sci. 2009 Jun;23(2):251-8
pubmed: 19645802
Int J Geriatr Psychiatry. 2008 Jan;23(1):11-5
pubmed: 17477450
N Engl J Med. 2008 Nov 6;359(19):1977-81
pubmed: 18987366
BMJ. 2014 Dec 15;349:g7485
pubmed: 25512331
Int J Technol Assess Health Care. 2011 Oct;27(4):369-75
pubmed: 22004779
Aging Ment Health. 2011 Apr;15(3):299-306
pubmed: 21271385
Dementia (London). 2013 Jan;12(1):23-8
pubmed: 24336660
J Adv Nurs. 2008 Jan;61(2):222-31
pubmed: 18186913
Expert Opin Drug Saf. 2014 Jan;13(1):57-65
pubmed: 24073682
Clin Interv Aging. 2008;3(3):573-9
pubmed: 18982928
Soc Sci Med. 2005 Jul;61(2):417-30
pubmed: 15893056
BMJ. 2013 Sep 09;347:f5125
pubmed: 24018000
Health Care Anal. 2010 Mar;18(1):60-84
pubmed: 19184444
J Am Geriatr Soc. 2008 Oct;56(10):1839-44
pubmed: 18771453
Alzheimers Dement. 2011 May;7(3):257-62
pubmed: 21514247
JAMA Psychiatry. 2015 May;72(5):438-45
pubmed: 25786075
J Health Serv Res Policy. 2005 Jul;10 Suppl 1:21-34
pubmed: 16053581
Contemp Nurse. 2010 Feb-Mar;34(2):230-6
pubmed: 20509807
Int Psychogeriatr. 2012 Mar;24(3):358-66
pubmed: 22014284
Acta Oncol. 1999;38(1):33-40
pubmed: 10090686
J Gen Intern Med. 2007 Jun;22(6):852-63
pubmed: 17375358
Med Care Res Rev. 2013 Feb;70(1 Suppl):50S-79S
pubmed: 23124615
Int J Geriatr Psychiatry. 2009 Jun;24(6):585-94
pubmed: 19031477
JONAS Healthc Law Ethics Regul. 2009 Oct-Dec;11(4):120-4; quiz 125-6
pubmed: 19935216
J Alzheimers Dis. 2019;69(4):897-904
pubmed: 31104020
Alzheimers Res Ther. 2015 Mar 26;7(1):34
pubmed: 25815064
Am J Public Health. 2008 Jan;98(1):15-21
pubmed: 18048780
N Engl J Med. 2012 Mar 1;366(9):780-1
pubmed: 22375967
Neurobiol Aging. 2017 Apr;52:132-140
pubmed: 28317644
BMJ. 2015 Feb 10;350:h530
pubmed: 25670197
Nurs Ethics. 2013 Feb;20(1):51-60
pubmed: 22918063
Alzheimers Dement. 2016 Mar;12(3):292-323
pubmed: 27012484
BMC Health Serv Res. 2016 Jan 19;16:21
pubmed: 26787190
Lancet Neurol. 2008 May;7(5):436-50
pubmed: 18420157
JAMA. 2007 Nov 28;298(20):2409-11
pubmed: 18042918
BMC Med. 2016 May 11;14:75
pubmed: 27170046
Value Health. 2009 Mar;12 Suppl 1:S27-30
pubmed: 19250128
Alzheimer Dis Assoc Disord. 2014 Jan-Mar;28(1):1-8
pubmed: 24322484
Age Ageing. 2015 Nov;44(6):985-93
pubmed: 26504119
Nurs Ethics. 2013 May;20(3):248-62
pubmed: 23329782
Lancet. 2017 Dec 16;390(10113):e51-e53
pubmed: 28735856
J Alzheimers Dis. 2019;67(2):495-501
pubmed: 30584137
Alzheimers Dement. 2009 May;5(3):215-26
pubmed: 19362885
BMC Med. 2014 Oct 31;12:192
pubmed: 25358236
BMJ. 2014 May 14;348:g3178
pubmed: 25134115
Palliat Med. 2014 Mar;28(3):197-209
pubmed: 23828874
Milbank Q. 2012 Jun;90(2):219-49
pubmed: 22709387
Dialogues Clin Neurosci. 2009;11(2):217-28
pubmed: 19585957
J Med Ethics. 2007 Sep;33(9):522-6
pubmed: 17761820
J Gen Intern Med. 2012 Oct;27(10):1361-7
pubmed: 22618581
Palliat Support Care. 2010 Mar;8(1):69-74
pubmed: 20163762
Nat Rev Neurol. 2013 Jan;9(1):54-8
pubmed: 23183885
Lancet. 2017 Dec 16;390(10113):2673-2734
pubmed: 28735855
Neurol Ther. 2016 Dec;5(2):183-192
pubmed: 27506698
Nurs Ethics. 2013 Dec;20(8):861-80
pubmed: 23715554
Lancet Neurol. 2009 Dec;8(12):1082-3
pubmed: 19909903
MedGenMed. 2007 Nov 07;9(4):29
pubmed: 18311379
Accid Emerg Nurs. 2007 Apr;15(2):94-100
pubmed: 17314048
Drugs Aging. 2015 Jun;32(6):453-67
pubmed: 25941104
Value Health. 2009 Jun;12(4):613-7
pubmed: 19900259
Br J Clin Pharmacol. 2010 Dec;70(6):781-3
pubmed: 21175432
Curr Opin Psychiatry. 2013 May;26(3):239-43
pubmed: 23493129
N Engl J Med. 2011 Jun 30;364(26):2478-81
pubmed: 21696327
Alzheimer Dis Assoc Disord. 2015 Jan-Mar;29(1):50-4
pubmed: 24936799
Mol Psychiatry. 2011 Sep;16(9):903-7
pubmed: 21556001
BMC Geriatr. 2008 Mar 26;8:7
pubmed: 18366748
J Alzheimers Dis. 2010;20(3):803-11
pubmed: 20182016
BMC Psychiatry. 2010 Dec 02;10:103
pubmed: 21126334
Br J Gen Pract. 2017 Jul;67(660):e501-e506
pubmed: 28347987
Health Expect. 2009 Jun;12(2):187-96
pubmed: 19320752
Int J Nurs Stud. 2010 Nov;47(11):1451-8
pubmed: 20598692
Med Health Care Philos. 2014 Aug;17(3):389-95
pubmed: 24737537
Alzheimers Dement. 2010 Jan;6(1):75-82
pubmed: 20129322
Health Care Women Int. 2009 Dec;30(12):1055-72
pubmed: 19894151
Lancet Neurol. 2016 Apr;15(5):455-532
pubmed: 26987701
Int Psychogeriatr. 2007 Jun;19(3):401-7
pubmed: 17346364
Alzheimers Res Ther. 2010 Aug 26;2(4):24
pubmed: 20796301
BMJ. 2006 Apr 22;332(7547):969-71
pubmed: 16627519
Psychosom Med. 2007 Jun;69(5):483-9
pubmed: 17556640
Int J Nurs Stud. 2013 Dec;50(12):1639-47
pubmed: 23866093
JAMA Intern Med. 2018 Feb 1;178(2):281-282
pubmed: 29255907
Lancet. 2010 Nov 13;376(9753):1689-98
pubmed: 21074260
Alzheimers Dement. 2017 Feb;13(2):186-195
pubmed: 27702619
Clin Interv Aging. 2008;3(3):413-20
pubmed: 18982912
Health Expect. 2015 Dec;18(6):1873-93
pubmed: 25156207
Evid Based Spine Care J. 2011 Feb;2(1):7-10
pubmed: 22956930
Health Care Anal. 2008 Jun;16(2):145-60
pubmed: 18449806
J Med Ethics. 2009 Feb;35(2):140-4
pubmed: 19181890
Nurs Ethics. 2008 May;15(3):384-95
pubmed: 18388172
Alzheimers Dement. 2012 Sep;8(5):445-52
pubmed: 22959699
Public Health Ethics. 2009 Jul;2(2):135-145
pubmed: 19655049
JAMA. 2011 Feb 2;305(5):495-9
pubmed: 21285427
Alzheimers Dement. 2013 Nov;9(6):741-744.e2
pubmed: 23415310
Drugs Aging. 2009;26(2):135-44
pubmed: 19220070