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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 87-95 |
| Number of pages | 9 |
| Journal | Kidney international reports |
| Volume | 9 |
| Issue number | 1 |
| Early online date | 1 Nov 2023 |
| DOIs | |
| Publication status | Published - 1 Jan 2024 |
Bibliographical note
Funding Information:We thank all the kidney transplant recipients who participated in this study. 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). The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript.
Publisher Copyright:
© 2023 International Society of Nephrology