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

Allison Jaure; Rahim T Vastani; Armando Teixeira-Pinto; Angela Ju; Jonathan C Craig; Andrea K Viecelli; Nicole Scholes-Robertson; Michelle A Josephson; Curie Ahn; Zeeshan Butt; Fergus J Caskey; Fabienne Dobbels; Kevin Fowler; Sheila Jowsey-Gregoire; Vivekanand Jha; Jane C Tan; Benedicte Sautenet; Martin Howell

doi:10.1016/j.ekir.2023.10.018

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

Kidney Int Rep. 2023 Nov 3;9(1):87-95. doi: 10.1016/j.ekir.2023.10.018. eCollection 2024 Jan.

Authors

Allison Jaure^{1

2}, Rahim T Vastani^{1

2}, Armando Teixeira-Pinto^{1

2}, Angela Ju^{1

2}, Jonathan C Craig³, Andrea K Viecelli^{4

5}, Nicole Scholes-Robertson^{1

2}, Michelle A Josephson⁶, Curie Ahn^{7

8

9}, Zeeshan Butt^{10

11}, Fergus J Caskey¹², Fabienne Dobbels¹³, Kevin Fowler¹⁴, Sheila Jowsey-Gregoire¹⁵, Vivekanand Jha^{16

17

18}, Jane C Tan¹⁹, Benedicte Sautenet²⁰, Martin Howell^{1

2}

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ College of Medicine and Public Health, Flinders University, South Australia, Australia.
⁴ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
⁵ Faculty of Medicine, University of Queensland, Brisbane, Australia.
⁶ Department of Medicine (Section of Nephrology), The University of Chicago, Chicago, Illinois, USA.
⁷ Transplantation Research Institute, Seoul National University College of Medicine, Seoul, Republic of Korea.
⁸ Department of Internal Medicine, Seoul National University College of Medicine, Seoul, Republic of Korea.
⁹ Transplantation Center, Seoul National University Hospital, Seoul, Republic of Korea.
¹⁰ Departments of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
¹¹ Phreesia, Inc., Wilmington, Delaware, USA.
¹² Population Health Sciences, Bristol Medical School, University of Bristol, UK.
¹³ Department of Public Health and Primary Care, KU Leuven, Belgium.
¹⁴ The Voice of the Patient, Saint Louis, Missouri, USA.
¹⁵ Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.
¹⁶ George Institute for Global Health, University of New South Wales, New Delhi, India.
¹⁷ School of Public Health, Imperial College, London, UK.
¹⁸ Prasanna School of Public Health, Manipal Academy of Higher Education, Manipal, India.
¹⁹ Department of Medicine, Stanford University, Stanford, California, USA.
²⁰ Faculty of Medicine, University of Tours, France.

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 recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item.

Results: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach's α = 0.87; 95% confidence intervals [CI]: 0.83-0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54-0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50).

Conclusion: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney transplant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making.

Keywords: core outcomes; kidney transplantation; life participation; patient-centered outcomes; patient-reported outcome measures; quality of life.