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The 2020 Quality of Death and Dying Index (QODDI)

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ClinicalTrials.gov Identifier: NCT04449497
Recruitment Status : Not yet recruiting
First Posted : June 26, 2020
Last Update Posted : June 26, 2020
Sponsor:
Information provided by (Responsible Party):
Eric A. Finkelstein, Duke-NUS Graduate Medical School

Brief Summary:
Lien Centre for Palliative Care has been commissioned by Lien Foundation to produce the 2020 rankings of the Quality of End of Life Care across countries. This index will focus on patients with life limiting illnesses and their families and aims to produce an index and rankings that take into account the preferences of patients, their caregivers and providers in terms of what is truly important at end of life. The aim of this research is to investigate best practices in palliative care policy and implementation as they relate to end-of-life care for individuals with life-limiting or life-threatening conditions. This task will be completed through a systematic review of peer reviewed and grey literature, supplemented with qualitative interviews to identify the list of the candidate indicators to be used in the index. A final instrument when completed by country experts will allow for ranking countries in their ability to deliver high quality end of life care.

Condition or disease
Palliative Care

Detailed Description:

Palliative care has gained considerable attention at the global, regional and national levels and there has been follow-up on actions outlined in the 2014 World Health Assembly (WHA) Resolution on palliative care. The WHA Resolution called countries to action to integrate palliative care into their national health strategies and as part of universal health coverage (UHC) efforts. Further, important contributions have been made to the literature on palliative care overall and at the end of life, such as by the Lancet Commission on Global Access to Palliative Care and Pain Relief as well as on quality healthcare.

Through this research, the Quality of Death and Dying Index will be published and it seeks to facilitate monitoring of country-level progress based on domains/sub-domains and indicators used to define quality of death and dying in the discourse on end-of-life care, and within the context of the contrasting realities occurring worldwide. Examining the various trajectories that countries have followed and the experiences of end-of-life care design and delivery by countries from different income groups and based on the viewpoint of diverse stakeholders will provide critical information for metrics development, namely the 2020 Quality of Death and Dying Index

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Study Type : Observational
Estimated Enrollment : 1500 participants
Observational Model: Other
Time Perspective: Cross-Sectional
Official Title: The 2020 Quality of Death and Dying Index
Estimated Study Start Date : July 2020
Estimated Primary Completion Date : May 2021
Estimated Study Completion Date : December 2021

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Palliative Care

Group/Cohort
Bereaved caregivers
Caregivers or friends of patients with life-limiting or life threatening conditions
Country experts
Qualified individuals (providers, palliative care experts, policy makers) from countries across the globe with knowledge of the phenomenon of interest-end-of-life care.
Patients
Patients with life-limiting or life-threatening illness or condition associated with serious health-related suffering who have undergone or are undergoing palliative care



Primary Outcome Measures :
  1. Ranking of countries in their ability to deliver high quality end of life care. [ Time Frame: 1 year ]


Information from the National Library of Medicine

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Ages Eligible for Study:   21 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Sampling Method:   Probability Sample
Study Population
This study will recruit patients with life limiting illnesses, their families as well as experts in the field of palliative care.
Criteria

Inclusion Criteria:

1. Technical expert with 10 or more years of experience in the field of palliative care and/or end-of-life care at the global, regional or national levels.

For policy-makers

1. Current or former, at the state or national level and having actively engaged in development of policies and strategies on palliative care and/or end-of-life care.

For patients 1. Patients with life-limiting or life-threatening illness or condition associated with serious health-related suffering who have undergone or are undergoing palliative care For caregivers

1. Caregiver of patient with life-limiting or life-threatening illness or condition.

For providers 1. Physicians, nurses and/or community health workers who have training to and have actively delivered end-of-life care.

Exclusion Criteria:

  • For patients 1. Individuals with physical, emotional or cognitive limitations which may prevent them from participating or comprehending the questions.

For all participants

  1. Inability to understand English.
  2. Minor and not above the age of 21 years.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT04449497


Locations
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Singapore
Duke-NUS Medical School
Singapore, Singapore, 169857
Contact: Eric Finkelstein, PhD       eric.finkelstein@duke-nus.edu.sg   
Contact: Ratna Singh, M.A       gmsv1598@nus.edu.sg   
Principal Investigator: Eric Fikelstein, PhD         
Sub-Investigator: Afsan Bhadelia, PhD         
Sponsors and Collaborators
Duke-NUS Graduate Medical School
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Responsible Party: Eric A. Finkelstein, Professor, Duke-NUS Graduate Medical School
ClinicalTrials.gov Identifier: NCT04449497    
Other Study ID Numbers: S-20-110
First Posted: June 26, 2020    Key Record Dates
Last Update Posted: June 26, 2020
Last Verified: June 2020
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No