The 2020 Quality of Death and Dying Index

NCT04449497 | Completed

• 1 other identifier: S-20-110
• Study Type: observational
• Target: 1,650
• Locations: 1 country
• Sites: 1

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.

Conditions

Palliative Care

Outcome Measures

Primary Outcomes (1)

• Ranking of countries

  Ranking of countries in their ability to deliver high quality end of life care.

  2 years

Study Arms (2)

Bereaved caregivers

Caregivers who, in the past two years,have lost a family member or close friend after a brief or extended period of illness or injury

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.

Eligibility Criteria

• Age: 21 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

This study will recruit caregivers of patients with life limiting illnesses as well as experts in the field of palliative care.

You may qualify if:

• 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.
• Current or former policy maker, 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.
• Physicians, nurses and/or community health workers who have training to and have actively delivered end-of-life care.
• For caregivers
• In the past two years, lost a family member or close friend after a brief or extended period of illness or injury.
• Involved in discussions with health care providers concerning the patient's choice of treatments
• Involved in helping the patient receive medical care, such as accompanying the patient to doctor's visits.
• Involved in looking after the patient's day to day well-being.

You may not qualify if:

• For patients 1. Individuals with physical, emotional or cognitive limitations which may prevent them from participating or comprehending the questions.
• For all participants
• Inability to understand English.
• Minor and not below the age of 21 years.

Sponsors & Collaborators

• Duke-NUS Graduate Medical School: lead

Study Sites (1)

Duke-NUS Medical School

Singapore, 169857, Singapore

Location

Study Officials

• Eric A Finkelstein, PhD

  National University of Singapore

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Study Record Dates

• First Submitted: June 24, 2020
• First Posted: June 26, 2020
• Study Start: November 1, 2020
• Primary Completion: December 1, 2021
• Study Completion: December 31, 2021
• Last Updated: February 21, 2024

Record last verified: 2024-02

Data Sharing

• IPD Sharing: Will not share

Locations

SG (1)