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

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

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 a ¼ 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.

Aim

We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients.

Contributors

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, and Martin Howell

Publication

Journal: Kidney International Reports
Volume: 9
Issue: 1
Pages: 87 - 95
Year: 2024
DOI: 10.1016/j.ekir.2023.10.018

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This project is supported by a National Health and Medical Research Council Centers for Research Excellence Grant 2007026. AT is supported by a NHMRC Investigator Award 20191009. AKV receives grant support from a Queensland Advancing Clinical Research Fellowship and an NHMRC Emerging Leader Grant (1196033).

Health Area

Disease Category: Kidney disease

Disease Name: Kidney Transplant

Target Population

Age Range: 18

Sex: Either

Nature of Intervention: Surgery

Stakeholders Involved

Study Type

- Recommendations for outcome measures (measurement/how)

Method(s)

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.