<clinical_study>
  <!-- This xml conforms to an XML Schema at:
    https://clinicaltrials.gov/ct2/html/images/info/public.xsd -->
  <required_header>
    <download_date>ClinicalTrials.gov processed this data on September 20, 2023</download_date>
    <link_text>Link to the current ClinicalTrials.gov record.</link_text>
    <url>https://clinicaltrials.gov/ct2/show/NCT04449497</url>
  </required_header>
  <id_info>
    <org_study_id>S-20-110</org_study_id>
    <nct_id>NCT04449497</nct_id>
  </id_info>
  <brief_title>The 2020 Quality of Death and Dying Index</brief_title>
  <acronym>QODDI</acronym>
  <official_title>The 2020 Quality of Death and Dying Index</official_title>
  <sponsors>
    <lead_sponsor>
      <agency>Duke-NUS Graduate Medical School</agency>
      <agency_class>Other</agency_class>
    </lead_sponsor>
  </sponsors>
  <source>Duke-NUS Graduate Medical School</source>
  <oversight_info>
    <has_dmc>No</has_dmc>
    <is_fda_regulated_drug>No</is_fda_regulated_drug>
    <is_fda_regulated_device>No</is_fda_regulated_device>
  </oversight_info>
  <brief_summary>
    <textblock>
      Lien Centre for Palliative Care has been commissioned by Lien Foundation to produce the 2020&#xD;
      rankings of the Quality of End of Life Care across countries. This index will focus on&#xD;
      patients with life limiting illnesses and their families and aims to produce an index and&#xD;
      rankings that take into account the preferences of patients, their caregivers and providers&#xD;
      in terms of what is truly important at end of life. The aim of this research is to&#xD;
      investigate best practices in palliative care policy and implementation as they relate to&#xD;
      end-of-life care for individuals with life-limiting or life-threatening conditions. This task&#xD;
      will be completed through a systematic review of peer reviewed and grey literature,&#xD;
      supplemented with qualitative interviews to identify the list of the candidate indicators to&#xD;
      be used in the index. A final instrument when completed by country experts will allow for&#xD;
      ranking countries in their ability to deliver high quality end of life care.&#xD;
    </textblock>
  </brief_summary>
  <detailed_description>
    <textblock>
      Palliative care has gained considerable attention at the global, regional and national levels&#xD;
      and there has been follow-up on actions outlined in the 2014 World Health Assembly (WHA)&#xD;
      Resolution on palliative care. The WHA Resolution called countries to action to integrate&#xD;
      palliative care into their national health strategies and as part of universal health&#xD;
      coverage (UHC) efforts. Further, important contributions have been made to the literature on&#xD;
      palliative care overall and at the end of life, such as by the Lancet Commission on Global&#xD;
      Access to Palliative Care and Pain Relief as well as on quality healthcare.&#xD;
&#xD;
      Through this research, the Quality of Death and Dying Index will be published and it seeks to&#xD;
      facilitate monitoring of country-level progress based on domains/sub-domains and indicators&#xD;
      used to define quality of death and dying in the discourse on end-of-life care, and within&#xD;
      the context of the contrasting realities occurring worldwide. Examining the various&#xD;
      trajectories that countries have followed and the experiences of end-of-life care design and&#xD;
      delivery by countries from different income groups and based on the viewpoint of diverse&#xD;
      stakeholders will provide critical information for metrics development, namely the 2020&#xD;
      Quality of Death and Dying Index&#xD;
    </textblock>
  </detailed_description>
  <overall_status>Unknown status</overall_status>
  <last_known_status>Recruiting</last_known_status>
  <start_date type="Actual">November 1, 2020</start_date>
  <completion_date type="Anticipated">December 31, 2021</completion_date>
  <primary_completion_date type="Anticipated">December 1, 2021</primary_completion_date>
  <study_type>Observational</study_type>
  <has_expanded_access>No</has_expanded_access>
  <study_design_info>
    <observational_model>Other</observational_model>
    <time_perspective>Cross-Sectional</time_perspective>
  </study_design_info>
  <primary_outcome>
    <measure>Ranking of countries</measure>
    <time_frame>2 years</time_frame>
    <description>Ranking of countries in their ability to deliver high quality end of life care.</description>
  </primary_outcome>
  <number_of_groups>2</number_of_groups>
  <enrollment type="Anticipated">1650</enrollment>
  <condition>Palliative Care</condition>
  <arm_group>
    <arm_group_label>Bereaved caregivers</arm_group_label>
    <description>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</description>
  </arm_group>
  <arm_group>
    <arm_group_label>Country experts</arm_group_label>
    <description>Qualified individuals (providers, palliative care experts, policy makers) from countries across the globe with knowledge of the phenomenon of interest-end-of-life care.</description>
  </arm_group>
  <eligibility>
    <study_pop>
      <textblock>
        This study will recruit caregivers of patients with life limiting illnesses as well as&#xD;
        experts in the field of palliative care.&#xD;
      </textblock>
    </study_pop>
    <sampling_method>Probability Sample</sampling_method>
    <criteria>
      <textblock>
        Inclusion Criteria for experts:&#xD;
&#xD;
          1. Technical expert with 10 or more years of experience in the field of palliative care&#xD;
             and/or end-of-life care at the global, regional or national levels.&#xD;
&#xD;
          2. Current or former policy maker, at the state or national level and having actively&#xD;
             engaged in development of policies and strategies on palliative care and/or&#xD;
             end-of-life care.&#xD;
&#xD;
          3. Physicians, nurses and/or community health workers who have training to and have&#xD;
             actively delivered end-of-life care.&#xD;
&#xD;
        For caregivers&#xD;
&#xD;
          1. In the past two years, lost a family member or close friend after a brief or extended&#xD;
             period of illness or injury.&#xD;
&#xD;
          2. Involved in discussions with health care providers concerning the patient's choice of&#xD;
             treatments&#xD;
&#xD;
          3. Involved in helping the patient receive medical care, such as accompanying the patient&#xD;
             to doctor's visits.&#xD;
&#xD;
          4. Involved in looking after the patient's day to day well-being.&#xD;
&#xD;
        Exclusion Criteria:&#xD;
&#xD;
          -  For patients 1. Individuals with physical, emotional or cognitive limitations which&#xD;
             may prevent them from participating or comprehending the questions.&#xD;
&#xD;
        For all participants&#xD;
&#xD;
          1. Inability to understand English.&#xD;
&#xD;
          2. Minor and not above the age of 21 years.&#xD;
      </textblock>
    </criteria>
    <gender>All</gender>
    <minimum_age>21 Years</minimum_age>
    <maximum_age>N/A</maximum_age>
  </eligibility>
  <overall_official>
    <last_name>Eric A Finkelstein, PhD</last_name>
    <role>Principal Investigator</role>
    <affiliation>National University of Singapore</affiliation>
  </overall_official>
  <overall_contact>
    <last_name>Eric A Finkelstein, PhD</last_name>
    <phone>+65 65162338</phone>
    <email>eric.finkelstein@duke-nus.edu.sg</email>
  </overall_contact>
  <overall_contact_backup>
    <last_name>Ratna Singh, MA</last_name>
    <phone>+1 786 6433449</phone>
    <email>gmsv1598@nus.edu.sg</email>
  </overall_contact_backup>
  <location>
    <facility>
      <name>Duke-NUS Medical School</name>
      <address>
        <city>Singapore</city>
        <zip>169857</zip>
        <country>Singapore</country>
      </address>
    </facility>
    <status>Recruiting</status>
    <contact>
      <last_name>Eric Finkelstein, PhD</last_name>
      <email>eric.finkelstein@duke-nus.edu.sg</email>
    </contact>
    <contact_backup>
      <last_name>Ratna Singh, M.A</last_name>
      <email>gmsv1598@nus.edu.sg</email>
    </contact_backup>
    <investigator>
      <last_name>Eric Fikelstein, PhD</last_name>
      <role>Principal Investigator</role>
    </investigator>
    <investigator>
      <last_name>Afsan Bhadelia, PhD</last_name>
      <role>Sub-Investigator</role>
    </investigator>
    <investigator>
      <last_name>Reed Johnson, PhD</last_name>
      <role>Sub-Investigator</role>
    </investigator>
    <investigator>
      <last_name>Juan Marcos Gonzalez, PhD</last_name>
      <role>Sub-Investigator</role>
    </investigator>
  </location>
  <location_countries>
    <country>Singapore</country>
  </location_countries>
  <verification_date>August 2021</verification_date>
  <study_first_submitted>June 24, 2020</study_first_submitted>
  <study_first_submitted_qc>June 24, 2020</study_first_submitted_qc>
  <study_first_posted type="Actual">June 26, 2020</study_first_posted>
  <last_update_submitted>August 18, 2021</last_update_submitted>
  <last_update_submitted_qc>August 18, 2021</last_update_submitted_qc>
  <last_update_posted type="Actual">August 24, 2021</last_update_posted>
  <responsible_party>
    <responsible_party_type>Principal Investigator</responsible_party_type>
    <investigator_affiliation>Duke-NUS Graduate Medical School</investigator_affiliation>
    <investigator_full_name>Eric A. Finkelstein</investigator_full_name>
    <investigator_title>Professor</investigator_title>
  </responsible_party>
  <patient_data>
    <sharing_ipd>No</sharing_ipd>
  </patient_data>
  <!-- Results have not yet been posted for this study                                          -->
</clinical_study>


download date: ClinicalTrials.gov processed this data on September 20, 2023
link text: Link to the current ClinicalTrials.gov record.
url: https://clinicaltrials.gov/ct2/show/NCT04449497
org study id: S-20-110
nct id: NCT04449497
lead sponsor: 
has dmc: No
is fda regulated drug: No
is fda regulated device: No
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.
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
observational model: Other
time perspective: Cross-Sectional
measure: Ranking of countries
time frame: 2 years
description: Ranking of countries in their ability to deliver high quality end of life care.
arm group label: Bereaved caregivers
description: 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
arm group label: Country experts
description: Qualified individuals (providers, palliative care experts, policy makers) from countries across the globe with knowledge of the phenomenon of interest-end-of-life care.
study pop: 
sampling method: Probability Sample
criteria: 
gender: All
minimum age: 21 Years
maximum age: N/A
last name: Eric A Finkelstein, PhD
role: Principal Investigator
affiliation: National University of Singapore
last name: Eric A Finkelstein, PhD
phone: +65 65162338
email: eric.finkelstein@duke-nus.edu.sg
last name: Ratna Singh, MA
phone: +1 786 6433449
email: gmsv1598@nus.edu.sg
facility: 
status: Recruiting
contact: 
contact backup: 
investigator: 
investigator: 
investigator: 
investigator: 
country: Singapore
responsible party type: Principal Investigator
investigator affiliation: Duke-NUS Graduate Medical School
investigator full name: Eric A. Finkelstein
investigator title: Professor
sharing ipd: No