TY - JOUR
T1 - Ethical challenges of outcome measurement in palliative care clinical practice
T2 - a systematic review of systematic reviews
AU - Pereira, Sandra Martins
AU - Hernández-Marrero, Pablo
N1 - Funding Information:
This manuscript was written during the duration of Projects InPalIn “Integrating Palliative Care in Intensive Care” and Subproject ETHICS II of Project ENSURE “Enhancing the Informed Consent Process: Supported Decision-Making and Capacity Assessment in Clinical Dementia Research”. Therefore, SMP and PHM would like to thank Fundação Merck, Sharp & Dohme and Fundação Grünenthal for their financial support to Project InPalIn and ERA-NET NEURON II, ELSA 2015, European Comission, and Fundação para a Ciência e a Tecnologia (FCT), Ministério da Ciência, Tecnologia e Ensino Superior, Portugal, for their financial support to the Subproject ETHICS II of Project ENSURE NEURON-II/0001/2015. The funders had no role in the design of the study, collection, analysis, and interpretation of data, and in writing the manuscript.
Funding Information:
This manuscript was written during the duration of Projects InPalIn "Integrating Palliative Care in Intensive Care" and Subproject ETHICS II of Project ENSURE "Enhancing the Informed Consent Process: Supported Decision-Making and Capacity Assessment in Clinical Dementia Research". Therefore, SMP and PHM would like to thank Funda??o Merck, Sharp & Dohme and Funda??o Gr?nenthal for their financial support to Project InPalIn and ERA-NET NEURON II, ELSA 2015, European Comission, and Funda??o para a Ci?ncia e a Tecnologia (FCT), Minist?rio da Ci?ncia, Tecnologia e Ensino Superior, Portugal, for their financial support to the Subproject ETHICS II of Project ENSURE NEURON-II/0001/2015. The funders had no role in the design of the study, collection, analysis, and interpretation of data, and in writing the manuscript.
Publisher Copyright:
© Annals of Palliative Medicine. All rights reserved.
PY - 2018
Y1 - 2018
N2 - Several outcome measures have been systematically implemented to be used in palliative care. However, routine use in clinical practice is not without ethical challenges, which are not commonly addressed. The objectives of this study are therefore (I) to identify the ethical challenges/issues of outcome measurement in palliative care and (II) to understand how these ethical challenges/issues are addressed in palliative care clinical practice. The study consisted of a systematic review of systematic reviews, which is a type of review that brings together a summary of reviews in one place. We searched PubMed, Web of Science, EBSCOhost searching CINAHL Complete, MEDLINE Complete, Nursing & Allied Health Collection: Comprehensive, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, Library, Information Science & Technology Abstracts, MedicLatina, from inception to January 2018. Out of 159 articles screened, only two [2] articles were included for analysis. The main ethical challenge/issue identified in these two reviews was cognitive impairment, particularly in patients with dementia. This challenge was addressed via proxy (family carers or health professionals) reporting outcome measurement. Ethical challenges/issues are poorly addressed in the existing systematic reviews about outcome measurement in palliative care clinical practice. Only two systematic reviews addressed ethical challenges/issues, namely cognitive impairment, particularly in persons with dementia. Further research is needed on this subject and to foster the use of outcome measurement among this vulnerable group of patients.
AB - Several outcome measures have been systematically implemented to be used in palliative care. However, routine use in clinical practice is not without ethical challenges, which are not commonly addressed. The objectives of this study are therefore (I) to identify the ethical challenges/issues of outcome measurement in palliative care and (II) to understand how these ethical challenges/issues are addressed in palliative care clinical practice. The study consisted of a systematic review of systematic reviews, which is a type of review that brings together a summary of reviews in one place. We searched PubMed, Web of Science, EBSCOhost searching CINAHL Complete, MEDLINE Complete, Nursing & Allied Health Collection: Comprehensive, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, Library, Information Science & Technology Abstracts, MedicLatina, from inception to January 2018. Out of 159 articles screened, only two [2] articles were included for analysis. The main ethical challenge/issue identified in these two reviews was cognitive impairment, particularly in patients with dementia. This challenge was addressed via proxy (family carers or health professionals) reporting outcome measurement. Ethical challenges/issues are poorly addressed in the existing systematic reviews about outcome measurement in palliative care clinical practice. Only two systematic reviews addressed ethical challenges/issues, namely cognitive impairment, particularly in persons with dementia. Further research is needed on this subject and to foster the use of outcome measurement among this vulnerable group of patients.
KW - Ethical issue
KW - Outcome measure
KW - Palliative care
KW - Patient reported outcome measurement
KW - Systematic review
UR - http://www.scopus.com/inward/record.url?scp=85055072943&partnerID=8YFLogxK
U2 - 10.21037/apm.2018.06.05
DO - 10.21037/apm.2018.06.05
M3 - Review article
C2 - 30180733
AN - SCOPUS:85055072943
SN - 2224-5820
VL - 7
SP - S207-S218
JO - Annals of palliative medicine
JF - Annals of palliative medicine
ER -