SONG-HD

“The whole thing comes down to lifestyle. I just want to remain as active as possible.” – patient on haemodialysis

Why develop core outcomes in haemodialysis?

DeshiaBillyHaemodialysis places an enormous burden on patients and their families, and the healthcare system. This escalating problem has spurred a proliferation of trials in dialysis, yet there has been no substantial improvement in health and quality of life outcomes for people on haemodialysis. The reasons for this are complex and varied but are partly due to problems in the design and reporting of studies, particularly outcome selection. Problems related to outcomes include the use of unvalidated surrogates or biochemical outcomes (e.g. calcium, phosphate), outcomes of little or no relevance to patients, highly variable outcomes selection limiting comparability across studies, and bias in reporting outcomes.

Establishing a core outcome set to be consistently measured and reported in haemodialysis trials will improve the integrity, transparency, usability and contribution of research relevant to patients requiring haemodialysis; and ensure that outcomes of relevance to patients, caregivers, and health professionals, are consistently reported across trials.

SONG-HD Steering Group

Jonathan Craig (Chair) | The University of Sydney; The Children’s Hospital at Westmead, Australia

Braden Manns | The University of Calgary, Canada

Brenda Hemmelgarn | The University of Calgary, Canada

David Wheeler | University College London, United Kingdom

Peter Tugwell | University of Ottawa, Canada

Sally Crowe | Crowe Associates Ltd, United Kingdom

Tess Harris | PKD International; UK Polycystic Kidney Disease Charity, United Kingdom

Wim Van Biesen | Ghent University Hospital, Belgium

Wolfgang Winkelmayer | Baylor College of Medicine, United States

Allison Tong | The University of Sydney; The Children’s Hospital at Westmead, Australia

Project coordinator: Nicole Evangelidis, The University of Sydney

Identifying core outcome domains

SONG-HD involves five phases:

SONGHDprocess

Project updates

Delphi-survey

In total, 1181 participants (202 patient/caregivers and 979 health professionals) from 73 countries participated in the SONG-HD Delphi survey. A report of the results will be available in February 2016.

SONG-HD Consensus workshop

In total, 55 patients, family members, caregivers, and health professionals participated in the  SONG-HD workshop on Saturday 7th November 2015 at the Horton Grand Hotel in San Diego.

The objectives of the workshop were to:

1. Provide an overview of the SONG-HD process and results

2. Review, discuss, and elicit feedback on the outcomes to be potentially included in the core outcome domain set for haemodialysis

3. Discuss implementation strategies and action plans.

The workshop report will be available in February 2016.

Participants and contributors: Jonathan Craig, Braden Manns, Brenda Hemmelgarn, David Wheeler, Peter Tugwell, Sally Crowe, Tess Harris, Wim van Biesen, Wolfgang Winkelmayer, Allison Tong, Aliza Thompson, Andrew Narva, Billy Powell, Brenda Hurd, Brendan Barrett, Brigitte Schiller, Bruce Culleton, Carmel Hawley, Carol Pollock, Charmaine Lok, Christoph Wanner, Christopher Chan, Daniel Weiner, David Harris, David Johnson, David Rosenbloom, Dena Rifkin, Deshia Bookman, Donal O’Donoghue, Edwina Brown, Elena Bavlovlenkov, Francesca Tentori, Helen Tam-Tham, Jack Williams, Jane Schell, Jennifer Flythe, Jenny Shen, Joachim Ix, Jochen Raimann, Joel Andress, John Agar, John Daugirdas, John Kusek, Jule Pinter, Kevan Polkinghorne, Kevin Abbott, Len Usyvat, Marcello Tonelli, Mark Marshall, Martin Gallagher, Michael Germain, Michael Walsh, Michael Zappitelli, Michelle Josephson, Nicholas Larkins, Nicole Evangelidis, Nilka Rios Burrows, Orlando Houston, Patrick Archdeacon, Peter Kerr, Peter Kotanko, Prabir Roy-Chaudhury, Rachael Morton, Raj Mehrotra, Rene van den Dorpel, Rita Suri, Reva Parks, Ron Wald, Ronke Apata, Sajeda Youssouf, Shalia Gibson, Sharrilyn Evered, Sreedhar Mandayam, Stephen Fadem, Stephen McDonald, Steve Holt, Terence Kee

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Proposed core outcome domains

The process for establishing core outcome domains has been completed and the proposed core outcome domains are:

Fatigue
Cardiovascular disease
Vascular access
Mortality (death)
A full report will be available soon for public comment. The develop of core outcome measures for each outcome domain is now underway.