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Peer-Reviewed Publication
Kidney Int Rep2024;9(1):87-95.January 1, 2024Journal Article

Validation of a Core Patient-Reported Outcome Measure for Life Participation in Kidney Transplant Recipients: the SONG Life Participation Instrument.

Allison Jaure1,2, Rahim T Vastani1,2, Armando Teixeira-Pinto1,2, Angela Ju1,2, Jonathan C Craig3, Andrea K Viecelli4,5, Nicole Scholes-Robertson1,2, Michelle A Josephson6, Curie Ahn7,8,9, Zeeshan Butt10,11, Fergus J Caskey12, Fabienne Dobbels13, Kevin Fowler14, Sheila Jowsey-Gregoire15, Vivekanand Jha16,17,18, Jane C Tan19, Benedicte Sautenet20, Martin Howell1,2
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
2Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
3College of Medicine and Public Health, Flinders University, South Australia, Australia.
4Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
5Faculty of Medicine, University of Queensland, Brisbane, Australia.
6Department of Medicine (Section of Nephrology), The University of Chicago, Chicago, Illinois, USA.
7Transplantation Research Institute, Seoul National University College of Medicine, Seoul, Republic of Korea.
8Department of Internal Medicine, Seoul National University College of Medicine, Seoul, Republic of Korea.
9Transplantation Center, Seoul National University Hospital, Seoul, Republic of Korea.
10Departments of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
11Phreesia, Inc., Wilmington, Delaware, USA.
12Population Health Sciences, Bristol Medical School, University of Bristol, UK.
13Department of Public Health and Primary Care, KU Leuven, Belgium.
14The Voice of the Patient, Saint Louis, Missouri, USA.
15Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.
16George Institute for Global Health, University of New South Wales, New Delhi, India.
17School of Public Health, Imperial College, London, UK.
18Prasanna School of Public Health, Manipal Academy of Higher Education, Manipal, India.
19Department of Medicine, Stanford University, Stanford, California, USA.
20Faculty of Medicine, University of Tours, France.
PubMed PMC DOI PDF

Abstract

INTRODUCTION: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients. METHODS: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipien…

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