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Contribute your voice to the development of a core indicator set for quality pediatric palliative care

Study Opportunity: Contribute your voice to the development of a core indicator set for quality pediatric palliative care.



A study launched by Dr. Kim Widger at the University of Toronto, Canada and an international team of researchers wants to hear your perspective on “what should get measured” when evaluating the quality of pediatric palliative care – and therefore “what will get improved.”

About the “What Matters Most” study

The overall goal of this study is to improve the care provided to children living with a serious illness. Many different criteria or “indicators” are currently used to assess the quality of the care provided. If everyone used the same indicators and only the most important ones, we could compare and consistently report on the quality of care provided by different programs. In this study, two panels of experts from around the world will help us select the indicators that are most important for measuring the quality of pediatric palliative care.

Who can participate in this study?

The Family Panel is made up of:

  • Children (less than 19 years of age) currently living with a serious illness.
  • Family members of a child living with a serious illness.
  • Family members of a child who passed away from a serious illness.

The Healthcare Professional Panel is made up of:

  • Individuals who conduct research about children living with a serious illness.
  • Individuals involved in providing care (either directly or through an administrative/decision-maker role) in any setting (e.g., home, hospital, hospice) to children living with a serious illness.

Participants must be able to read in English, French, or Spanish.

What is involved in participating in this study?

Participants will be asked to complete 3 online surveys over about 8 months. The surveys will ask participants to rate the importance of a list of indicators gathered through a review of the literature. Each survey will take less than 30 minutes to complete. As a token of appreciation, each participant will be given $25 CAD for their time and effort for each survey.

How can I participate?

If you are interested in participating in this study, please send an email.

Click here if you like to learn more.


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