TY - JOUR
T1 - Validation of a Core Patient-Reported Outcome Measure for Life Participation in Kidney Transplant Recipients
T2 - the SONG Life Participation Instrument
AU - Jaure, Allison
AU - Vastani, Rahim T.
AU - Teixeira-Pinto, Armando
AU - Ju, Angela
AU - Craig, Jonathan C.
AU - Viecelli, Andrea K.
AU - Scholes-Robertson, Nicole
AU - Josephson, Michelle A.
AU - Ahn, Curie
AU - Butt, Zeeshan
AU - Caskey, Fergus J.
AU - Dobbels, Fabienne
AU - Fowler, Kevin
AU - Jowsey-Gregoire, Sheila
AU - Jha, Vivekanand
AU - Tan, Jane C.
AU - Sautenet, Benedicte
AU - Howell, Martin
PY - 2024/1
Y1 - 2024/1
N2 - 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.
AB - 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.
KW - core outcomes
KW - kidney transplantation
KW - life participation
KW - patient-centered outcomes
KW - patient-reported outcome measures
KW - quality of life
UR - http://www.scopus.com/inward/record.url?scp=85177046627&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/2007026
U2 - 10.1016/j.ekir.2023.10.018
DO - 10.1016/j.ekir.2023.10.018
M3 - Article
AN - SCOPUS:85177046627
SN - 2468-0249
VL - 9
SP - 87
EP - 95
JO - Kidney International Reports
JF - Kidney International Reports
IS - 1
ER -