What Matters Most
Identifying a Core Indicator Set for Quality Pediatric Palliative Care
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:
Eligibility
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 died from a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)
Healthcare Professional Panel
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?
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, Professor, Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
e-mail: kim.widger@utoronto.ca phone: 416-978-7925