What Matters Most

Identifying a Core Indicator Set for Quality Pediatric Palliative Care

We are still recruiting participants to the Family Panel.

If you meet the Family Panel eligibility criteria (below) and would like to take part in this study – please email whatmattersmost@utoronto.ca.

The overall goal of this study is to improve the care provided to children living with a serious illness. Pediatric palliative care is an extra layer of support for these children and their families. It is about making each day as good as it can be – whatever that means to a child and family. (Find more information about pediatric palliative care here).

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 groups (called ‘panels’) of experts from around the world are helping us select the indicators that are most important for measuring the quality of care. 

The Family Panel is made of up of children with a serious illness and their families (e.g., parents, siblings, grandparents, etc.). 

The Healthcare Professional (HCP) Panel is made up of clinicians (e.g., doctors, nurses, social workers etc.), researchers, and administrators (e.g., executive director of a palliative care program) who are involved in palliative care for children.  

About the What Matters Most Study:

Survey Round #1 Summary 

& Round #2 Instructions:

Click for: Español or Français

Click for: Español or Français

Eligibility

All participants must be able to read in English, French, or Spanish, able to access online materials, and be willing to provide an email address so they can be contacted to complete each study phase. See below for more information about eligibility for each panel.

Family Panel

The Family Panel is made up of participants who are:

between 12 and 19 years of age and are currently living with a serious illness (for example, cancer, muscular dystrophy, a serious genetic illness, etc.)   

OR a family member of a child 19 years old or younger living with a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)  

OR a family member of a child who passed away from a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)  

 

Healthcare Professional Panel

The Healthcare Professional Panel is made up of participants who conduct research about OR are involved in providing care (either directly or through an administrative/decisionmaker role) in any setting (e.g., home, hospital, hospice) to children less than 19 years of age living with a serious illness.

 

 

 

Time Commitment 

Participants are being asked to complete a series of 3 surveys over about an 8-month period. Each survey takes less than 30 minutes to complete. The first survey round has been completed. Please watch the videos to learn more about the study and the surveys. 

Ready to get started?

If you meet the eligibility criteria for the Family Panel and would like to take part in the study please email whatmattersmost@utoronto.ca to be sent a link to the survey. The survey is available in English, French, and Spanish. Recruitment to the Healthcare Professional Panel has closed.

Meet the Research Team

Principal Investigator:  

Kimberley Widger RN PhD, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada 

Co-Investigators: 

Prasanna Ananth MD PhD, Yale University, Connecticut, USA

Justin Baker MD FAAP FAAHPM, Stanford Medicine, California, USA 

Jackie Boyden RN PhD, Children’s Hospital of Philadelphia, Philadelphia, USA

Francine Buchanan MLIS, Hospital for Sick Children, Toronto, Canada

Poh Heng Chong MBBS PhD, HCA Hospice Care, Singapore

Ross Drake MBChB, Queensland Children’s Hospital, Brisbane, New Zealand

Veronica Dussel MD MPH, Universidad de Buenos Aires, Argentina

Chris Feudtner MD PhD, Children’s Hospital of Philadelphia, Philadelphia, USA

Lorna Fraser PhD MBChB, Kings College London, England 

Marie Friedel PNP PhD, University of Luxembourg, Luxembourg

Anthony Herbert MD, Queensland Children’s Hospital, South Brisbane, Australia

Emily Johnston MD, University of Alabama at Birmingham, USA

Rebecca Kirch BA JD, National Patient Advocate Foundation, Washington, USA

Blyth Lord MA, Courageous Parents Network, Newton, USA

Mike McNeil MD, St. Jude Children’s Research Hospital, Memphis, USA 

Kate Nelson MD PhD, Hospital for Sick Children, Toronto, Canada

Juerg Streuli MD PhD, Stiftung Ostschweizer Kinderspital, Switzerland 

Rachel Thienprayoon MD Cincinnati Children’s Hospital Medical Center, Cincinnati, USA 

Joanne Wolfe MD MPH, Massachusetts General Hospital, Boston, USA 

Research Contact:  

Kimberley Widger RN PhD, Principal Investigator, Associate Professor, Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada 

e-mail: kim.widger@utoronto.ca      phone: 416-978-7925